research on home health care services

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Home health care: Research behind the high-demand, low-pay occupation

As baby boomers age, demand for home health care increases. Studies identify trends in availability and reasons for the industry's rapid churn.

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by Chloe Reichel, The Journalist's Resource August 19, 2019

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This collection of research has been updated since it was originally posted in November 2018.

As baby boomers age, the demands placed on the country’s health care system are increasing. That includes the home health care industry, which is undergoing changes to accommodate a growing senior population.

Home health care services allow people who require extra care to remain in their homes, reducing the burden otherwise shouldered by health care facilities, assisted living centers and nursing homes. The services also can be less expensive than these other facilities.

According to the most recently available data from the U.S. Centers for Disease Control and Prevention, 4.5 million adult patients received home health care at some point in 2015. Federal data indicate that number is expected to grow in the next decade. The Bureau of Labor Statistics projects employment of home health aides and personal care aides to grow 41 percent from 2016 to 2026, outpacing average growth for other occupations.

Home health aides are distinct from visiting registered nurses or licensed practical nurses in that they are not required to have specialized education beyond a high school degree, are not licensed as nurses, and in many cases do not provide assistance with medical tasks. Per the Bureau of Labor Statistics, “Home health aides and personal care aides help people with disabilities, chronic illnesses, or cognitive impairment by assisting in their daily living activities. They often help older adults who need assistance. In some states, home health aides may be able to give a client medication or check the client’s vital signs under the direction of a nurse or other healthcare practitioner.”

Home health care services are typically run through agencies. The most recently available CDC data estimates that 12,200 such agencies were operating in the U.S. in 2016. According to this analysis, 80.6 percent of these agencies were for profit, while 14.8 percent were non-profit and 4.6 percent were government owned.

Despite the demand for home health aides, the compensation remains low – median pay in 2017 was $11.12 an hour. By contrast, other jobs in the healthcare field that typically require the same entry-level education (high school diploma or equivalent), such as optician and pharmacy technician pay more — $17.43 and $15.26 per hour, respectively. Assisting the disabled, elderly and chronically ill with the everyday tasks of living — the work of home health care — can be physically and emotionally taxing. Turnover is common in the field, which can impact the quality of care received by clients.

This research roundup looks at home health care from a variety of angles. It identifies geographic and demographic trends in the availability and provision of home health care in the United States. Featured research also points to reasons why the industry experiences such rapid churn and to potential solutions, from new training programs to on-the-job exercise programs that benefit clients and workers alike.

Trends in home health care

Care for America’s Elderly and Disabled People Relies on Immigrant Labor Zallman, Leah; et al. Health Affairs , June 2019.

This study analyzes nationally representative survey data collected on 180,084 people in 2017 to better understand the composition of the direct care workforce. The data came from the annual social and economic supplement of the 2018 Current Population Survey, conducted by the Census Bureau and the Bureau of Labor Statistics. The researchers defined direct care occupations as personal and home care or home health aides, as well as nursing and psychiatric aides. For the purposes of their analysis, respondents who were born outside of the U.S. were considered immigrants. The survey did not collect information about documentation status, so the researchers used a method that has been applied previously to this dataset in labor economics and health care research to estimate proportions of unauthorized immigrants.

Key findings:

• In 2017, over one fourth of direct care workers — 27.5% — were immigrants.
• Immigrants with legal noncitizen status accounted for 9.0% of direct care workers, naturalized citizens made up 13.9% of direct care workers and unauthorized immigrants totaled 4.3% of direct care workers. For reference, the paper cites the following statistics: immigrants with legal noncitizen status comprise 5.2% of the U.S. population, naturalized citizens make up 6.8%, and unauthorized immigrants account for 3.6%.
• Immigrant health care workers were more likely than US-born workers to be employed in home health agencies (13.1% vs. 7.9%) and in nonformal settings (such as private households and residential facilities that do not have nursing services).
• The authors write that these findings emphasize immigrants’ disproportionate role in providing health care support for people in the U.S. “In light of current shortages, high turnover rates, low retention rates, growing demand for direct care workers, and immigrants’ already disproportionate role in filling such jobs, policies that curtail immigration are likely to compromise the availability of care,” the authors write. “Moreover, the anti-immigrant rhetoric and policies that restrict immigration threaten the health and well-being of immigrants who are entrusted with the care of the nation’s elderly and disabled people.”

“ National Trends and Geographic Variation in Availability of Home Health Care: 2002-2015 ” Wang, Yun; et al. Journal of the American Geriatrics Society , July 2017.

How does home health care vary across the country? This study maps the number of home health agencies in every county in the U.S. from 2002 to 2015.

• The average number of Medicare-certified home health agencies per county increased from 14.7 per 100,000 people to 21.8 per 100,000 in the time studied.
• The coasts had lower home health care availability than the center of the country.
• Counties with a higher median income and larger senior populations were likely to have more home health care agencies.

“ Invisible No More: A Scoping Review of the Health Care Aide Workforce Literature ” Hewko, Sarah J.; et al. BMC Nursing , December 2015.

For this review, researchers screened 5,045 papers on various aspects of the health care aide workforce to identify 82 relevant studies. The synthesis of these papers led to the following findings about health care aide education, supply, use, demand, injury and illness.

• The average health care aide was female, 36-45 years old and had a high school education or less.
• Health care aides were at a higher risk of injury than registered nurses and licensed practical nurses.
• Home health care aides were distinct from other health care aides in that they were more likely to be older and immigrants.
• The research suggests that given the high turnover among health care aides, coupled with projected increases in demand, there will be shortages of health care aides in the future.
• Home health care aides had lower job stability, earned less, were less likely to have fringe benefits and worked fewer hours than health care aides who worked in hospitals and nursing homes.

Mental and physical health of home care workers

“ Health-Related Quality of Life Among U.S. Workers: Variability Across Occupation Groups ” Shockey, Taylor M.; et al. American Journal of Public Health , August 2017.

This study compares self-rated health, reports of frequent physical and mental distress, frequent overall unhealthy days and frequent activity limitation (defined as 14 days or more in the past month in which poor physical or mental health kept respondents from doing their usual activities) among workers in 22 standard occupation groups. The study compared survey responses collected from over 155,000 workers.

• “Health care support occupations, with the most female workers of the occupation groups, have one of the highest adjusted prevalence of frequent activity limitation among all occupation groups. According to the U.S. Bureau of Labor Statistics, nursing, psychiatric, and home health aides, who account for approximately two thirds of all health care support occupations, ranked over a 10-year period among the top of occupation groups reporting the most cases of workplace injuries and illnesses. Health care support occupations also experience the highest risks of musculoskeletal disorders.”

“ ‘Who’s Caring for Us?’: Understanding and Addressing the Effects of Emotional Labor on Home Health Aides’ Well-Being ” Franzosa, Emily; et al. The Gerontologist , August 2018.

“Interventions to strengthen the home care workforce focus on workers’ economic and physical well-being, without acknowledging the caring labor affecting emotional well-being. Our study examined workers’ perceptions of the emotional effects of caring work, coping mechanisms, and desired support,” the researchers write. They conducted focus groups with 27 home care workers.

• The factors that were important to home health aides’ emotional well-being were: close relationships with clients, work-life balance, positive relationships with clients’ families and agency supervisors and feeling like their work was valued.
• “Aides were largely alone in managing job stressors and desired more communication, connection, and support from supervisors and peers.”
• The authors suggest policy makers and agencies adjust reimbursement systems and job descriptions to reflect the emotional labor required of the role and to improve communication, training, support and mental health benefits for home care workers.

“ Safety Risks Associated with Physical Interactions between Patients and Caregivers During Treatment and Care Delivery in Home Care Settings: A Systematic Review ” Hignett, Sue; et al. International Journal of Nursing Studies , July 2016.

This review identifies research that highlights the safety risks associated with home care work.

• Risks backed up by strong evidence from at least two papers include: “awkward [physical] working positions, social environment issues (additional tasks and distractions), abuse and violence [from patients and their family], inadequate team (peer) support, problems with workload planning, needle stick injuries and physical workload (moving and handling patients).”
• The authors suggest that policy, design and system-level interventions can promote the safety of caregivers and patients.

“ Determinants of Occupational Injury for U.S. Home Health Aides Reporting One or More Work-Related Injuries ” Hamadi, Hanadi; et al. Injury Prevention , October 2018.

This study uses the same dataset as the April 2016 paper published in the Gerontologist to look more closely at the factors associated with increased injury risk for home health aides.

• Home health aides who did not consistently care for the same patients had decreased injury risk.
• Home health aides who “reported not needing any other devices for job safety,” such as lifting devices, were also at a lower risk of injury.

Those who leave and those who sta

“ Predictors of Intent to Leave the Job Among Home Health Workers: Analysis of the National Home Health Aide Survey ” Stone, Robyn; et al. The Gerontologist , April 2016.

What are the factors associated with home health workers who plan to stay in their jobs? What factors are common among those who want to leave? This study analyzes data collected from 3,377 Medicare- and Medicaid-certified home health workers to answer these questions.

• The following factors were associated with lower intent to leave home health work: job satisfaction, consistent patient assignment (being assigned the same patients each week) and provision of health insurance.
• The following factors were associated with a greater intent to leave home health work: insufficient work hours, on-the-job injuries, African American race and a higher household income.
• “The findings suggest that intention to leave the job may be reduced through policies that prevent injuries, improve consistency of client assignment, improve experiences among African American workers, and offer sufficient hours to workers who want them.”

“ Characteristics of Home Care Workers Who Leave Their Jobs: A Cross-Sectional Study of Job Satisfaction and Turnover in Washington State ” Banijamali, Sahar; Jacoby, Daniel; Hagopian, Amy. Home Health Care Service Quarterly , June 2014.

This study surveyed 402 former home care workers in Washington State and compared their responses with those still in the field.

• People who left home care work were: “more highly educated, had higher household income, and were more likely to be White.”
• Home care workers who left the field and found new jobs reported better benefits, wages, hours, and career mobility than they had previously.
• “The low status and poor pay of home care workers may result in the inability of the profession to retain those who face better prospects.”

Successful Interventions

“ Building Health Promotion into the Job of Home Care Aides: Transformation of the Workplace Health Environment ” Muramatsu, Naoko; et al. International Journal of Environmental Research and Public Health , April 2017.

Tasking 46 home care workers with leading their clients through a “gentle physical activity program” benefited the aides as well as the clients, according to this pilot study of a workplace health promotion program called “Healthy Moves.”

• Almost all — 98 percent — of home care aides reported being satisfied with the program. Ninety percent said they strongly agreed or agreed that the program helped them motivate their clients to be active, and 95 percent felt the training increased their knowledge about physical activity and helped them facilitate safe exercise for their clients.
• Through surveys and focus groups, the home care aides described an improved “psychosocial work environment.” “The most frequently mentioned reason why [health care aides] were satisfied with conducting Healthy Moves with their clients was that it was beneficial for both the clients and the [health care aides] themselves.”

“ The Homecare Aide Workforce Initiative: Implementation and Outcomes ” Feldman, Penny H.; et al. Journal of Applied Gerontology , April 2017.

“Improved training and support are thought to improve retention among direct care workers. However, few studies have examined actual retention. This study examined satisfaction and retention among home health aides enrolled in the ‘Homecare Aide Workforce Initiative’ (HAWI) at three New York agencies,” the authors write. HAWI is a grant-funded program that provides training, mentoring and case management support for workers. The study looks at a sample of 228 home health aides who completed the training and were still on the job after three months.

• “Three months after hire, 91 percent of HAWI hires reported they were ‘very satisfied’ or ‘satisfied’ with the job; 57 percent reported they were ‘not at all likely’ to leave their job in the coming year.”
• “At 365 days, 60 percent were still working.”
• The authors predicted through their analysis that the odds of home health care workers remaining in their jobs at 3, 6 and 12 months after starting work were significantly higher among HAWI graduates than non-HAWI employees.

“ Ergonomic and Safety Risk Factors in Home Health Care: Exploration and Assessment of Alternative Interventions ” Czuba, Laura Rae; Sommerich, Carolyn M.; Lavender, Steven A. Work , 2012.

For this study, researchers analyzed injury data for home health care workers and observed them on the job to identify the risk factors that lead to injury. They found that aides who worked with patients with greater physical needs (i.e., patients who need assistance being transferred from wheelchair to shower or bed) were more likely to report end-of-shift exhaustion and pain.

Conclusion:

• “Home health care companies may find that developing a scheduling system that manages the exposure of their aides to higher needs patients may be a feasible and effective method for reducing the aides’ exposure to risk factors for musculoskeletal injuries.”

About The Author

Chloe Reichel

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Home health services research

Affiliation.

• 1 International Health Programs, Frances Payne Bolton School of Nursing, Case Western Reserve University, USA.
• PMID: 12092512

This chapter reviews 69 published research reports of home health care from a health services perspective by nurse researchers and researchers from other disciplines. Reports were identified through searches of the National Library of Medicine (MEDLINE), and the Cumulative Index to Nursing and Allied Health Literature and Social Sciences Citation Index using the following search terms: home health care, health services research, and elders. Within the major areas identified, the following additional terms were specified: resource use and outcomes. Reports were included if published between 1995 and 2001, used samples age 65 and older, performed in the U.S., and published in English. Studies of all types were included. The key findings follow: (a) Most studies were a theoretical. If a theoretical model was used, it was most often the Andersen Behavioral Model. (b) Few conclusions can be drawn about resource use--increasing age and higher severity of health related problems are associated with higher numbers of home visits. The variety of measures of resource use and the study approaches (large national data sets versus single or several agency samples) limits the ability to draw conclusions on resource use. (c) There is a growing body of evidence on rehospitalization of home health care patients which indicates rehospitalization is prevalent but largely not predictable. (d) Patient outcomes research is inconclusive at this point, primarily because there are few studies that examine patient outcomes using a consistent set of measures. The main recommendations are: to study rehospitalization using a more profile-based approach to determine visit patterns that may be effective, to further specify the kinds of outcomes that may be achieved as a result of home health care and which patients might be expected to achieve positive outcomes, and to examine the integration of home health care with the broader community-based services.

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• Home Health
• BAYFRONT HOME HEALTH SERVICES

BAYFRONT HOME HEALTH SERVICES SAINT PETERSBURG, FL

BAYFRONT HOME HEALTH SERVICES is a Proprietary, Medicare Certified , home health care agency located in SAINT PETERSBURG, FL. This agency has been certified to participate in Medicare programs since December 04, 2002 and given a rating of 4.0 stars . A rating if 4-5 stars would mean the agency performed better than others regarding care practices and outcome.

Updated: 01/25/2020 — See below for more information on BAYFRONT HOME HEALTH SERVICES , including the services they offer, quality of care and patient experience.

Contact Information

1 Home health agencies can be run by private for-profit corporations, non-profit corporations, religious affiliated organizations or government entities. The type of ownership may affect agency resources and how services are organized. Quality can vary in home health agencies within each of the different types of ownership.

2 Agencies that are Medicare Certified are able to participate in Medicare related programs.

Services Offered

List of services offered at BAYFRONT HOME HEALTH SERVICES in SAINT PETERSBURG, FL.

Nursing Care Services

Care given or supervised by registered nurses. Nurses provide direct care; manage, observe, and evaluate a patient’s care; and teach the patient and his or her family caregiver.

Physical Therapy Services

Treatment of injury and disease by mechanical means, like heat, light, exercise, and massage.

Occupational Therapy Services

Services given to help you return to usual activities (like bathing, preparing meals, and housekeeping) after illness either on an inpatient or outpatient basis.

Speech Therapy Services

This is the study of communication problems. Speech therapists assist with problems involving speech, language, and swallowing. Communication problems can be present at birth or develop after an injury or illness, like a stroke.

Medical Social Services

Services to help you with social and emotional concerns related to your illness. This might include counseling or help in finding resources in your community.

Home Health Aide Services

Part time or intermittent services to help you with your daily living activities.

Areas Serviced

Locations serviced by BAYFRONT HOME HEALTH SERVICES.

Home Health Agency Report

In 2016, BAYFRONT HOME HEALTH SERVICES charged a total of $652,707 to Medicare for a total of 262 (non- LUPA ) home health episodes provided to 218 Medicare beneficiaries.

The report covers only calendar year 2016.

Other home health agencies near by

Prohealth home health services inc, preferred touch home care, faith home health inc, primecare home health, palms home care, mederi caretenders, utopia home care, community therapy home care inc.

• Open access
• Published: 14 August 2024

Designing an mHealth application for informal carers concerning the management of behavioural and psychological symptoms of dementia: a need analysis survey

• Thilanka Jagoda 1 , 2 ,
• Samath D. Dharmaratne 1 , 3 &
• Sarath Rathnayake 4  

BMC Health Services Research volume  24 , Article number:  930 ( 2024 ) Cite this article

Metrics details

Informal carers face difficulties and challenges when dealing with the behavioural and psychological symptoms of dementia (BPSD) of their family members or friends residing at home. Mobile health (mHealth) applications are promising for educating and supporting carers. However, needs analysis studies have not been conducted in Sri Lanka to develop mHealth applications for informal carers of people with dementia.

To explore the needs to design an mHealth application for informal carers of people with dementia concerning the management of BPSD.

An exploratory cross-sectional survey was conducted among a convenience sample ( N  = 203) of informal carers as a part of developing an mHealth application. Family members, relatives, or friends who lived with people with dementia and provided care on an unpaid basis for more than three months were included. The questionnaire included sociodemographic data, carer-rated prevalence and severity of BPSD, and informal carers’ knowledge of dementia, carer burden, information-seeking sources, availability of smartphones, mHealth information seeking and perception of mHealth information seeking related to managing BPSD. Descriptive analysis and inferential tests were performed.

Informal carers of people with dementia were predominantly female (70.4%), and 64% showed low knowledge of dementia. Of the participants, 35% reported a high carer burden, 53.7% reported a low burden, and only 11.3% reported no carer burden. Most of their care recipients (97%) had at least one BPSD. The prevalence and severity of BPSD were significantly and positively correlated with the carer burden. The participants’ main source of information was health professionals. Most of them owned smartphones (63.5%), but none used mHealth applications for dementia-related information seeking. Approximately half of the respondents were ready to spend time (52.7%) and money (46.8%) on mHealth information seeking. Perceived mHealth usefulness was significantly associated with dementia knowledge, smartphone ownership, and readiness to spend time and money on mHealth information seeking.

Informal carers of people with dementia were affected by BPSD in their care recipients. This study explored carers’ educational needs concerning dementia, BPSD, and carer burden. Informal carers could adapt mHealth for dementia-related information seeking. Their unmet needs in managing BPSD should be explored.

Peer Review reports

Dementia is a global public health concern and is common in old age. Although the typical feature of dementia is cognitive changes, behavioural and psychological symptoms of dementia (BPSD) are widespread clusters of manifestations [ 1 , 2 ] and appear at the early stage of the dementia trajectory [ 3 ]. These symptoms include psychotic (e.g., hallucinations, delusions), affective (e.g., anxiety, agitation, irritability, depression), and behavioural (e.g., disinhibition, euphoria, apathy, aberrant motor behaviours) manifestations [ 1 ]. BPSD can lead to negative consequences for people affected with dementia, such as distress, misuse of medication, increased mortality, and long-term hospitalisation [ 4 , 5 ].

Informal carers, especially family members, provide care for most community-dwelling people with dementia. Informal carers are mainly co-residents, for example, family members or, to a lesser extent, individuals not living in the same household, such as neighbours or friends [ 6 ]. They experience negative psychological consequences related to managing the BPSD of their loved ones [ 2 , 7 ]. This situation leads to the development of strain, burden, frustration and depression among carers [ 2 , 8 ]. The difficulties associated with caring and individualised needs concerning BPSD have been shown to escalate the importance of fulfilling informal carers’ educational and supportive information needs [ 8 , 9 ].

Adapting digital approaches, including providing health care for people with dementia, is an emerging trend in community-based health interventions [ 10 , 11 ]. A mobile health (mHealth) application refers to a health-related piece of software designed to improve people’s health via several operations and designs running on mobile devices, such as smartphones, tablet phones and smartwatches [ 12 ]. Recent literature reports that mHealth applications are used in healthcare for different purposes, for example, the prevention of diseases, promotion of a healthy lifestyle, diagnosis, health education, self-monitoring, and motivating health-related goal achievements [ 13 , 14 ]. The features of mHealth applications include navigation, finding healthcare professionals and facilities, reminders (e.g., medication reminders), notifications, tracking the changes in diseases, and chatting, texting and communicating with family, friends and social groups [ 13 , 14 ]. It is a widely accepted digital health approach, and mHealth applications were developed for informal carers of individuals with dementia concerning social and indirect support, health education, adjusting the activities of daily living, and technology-based monitoring of carers and their care recipients [ 15 , 16 , 17 ]. However, a recent systematic review revealed that limited evidence-based mHealth applications have been developed to educate or support informal carers of people with dementia to provide them with information to manage BPSD [ 18 ].

The development of an mHealth application is a complex process, and mobile health application developers apply human-centred design (known as user-centred design) to improve effectiveness, usability and user acceptance [ 19 , 20 ]. Steps in developing an mHealth application include needs assessment, design and development, and evaluation [ 19 , 21 ]. The purpose of a need assessment phase is to identify the desires or needs of end users to develop user-friendly and acceptable mHealth applications [ 22 ].

Sri Lanka is a low- and middle-income country where a high prevalence of dementia is predicted due to the sharp increase in the ageing population [ 23 , 24 ]. In Sri Lanka, the all-age (crude) dementia incidence rate is 84.3 per 100,000, and the crude prevalence of dementia is 0.6% [ 25 ]. According to the Ministry of Health [ 26 ], the total registered population of people with dementia was 397 in the Colombo District, where the study was conducted. A recent scoping review related to dementia care in Sri Lanka reported that there are no properly implemented screening programmes to detect individuals with dementia in Sri Lanka [ 27 ]. In Sri Lanka, different approaches are used to diagnose dementia clinically, for example, according to the criteria given by the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), International Classification of Diseases (ICD) 10, and National Institute of Neurological and Communicative Diseases and Stroke/Alzheimer’s Disease and Related Disorders Association (NINCDS-ADRDA) [ 27 ]. Moreover, cognitive and neuropsychological tests (Cambridge Cognitive Score, Montreal Cognitive Assessment, Neuropsychiatric Inventory, Clinical Dementia Rating Scale), blood and cerebrospinal fluid investigations, brain imaging (computed tomography and magnetic resonance imaging), and interviews with individuals were also used to diagnose this condition [ 25 , 27 ]. The literature suggests that the prevalence of BPSD is high among people with dementia in Sri Lanka [ 28 , 29 ], and BPSD are a primary reason that carers seek help from the health sector [ 29 ]. However, a lack of awareness of dementia was reported among family carers of people with dementia [ 29 ], while their knowledge of dementia was not studied. The literature indicates that informal carers’ knowledge of dementia facilitates their caring role [ 8 ]. Approximately 75% of informal carers of patients with dementia in Sri Lanka have experienced a mild to severe carer burden [ 30 ]. A systematic review revealed that carer burden was associated with BPSD, poor self-care ability and lack of supportive systems [ 31 ]. Therefore, multidimensional interventions, mainly focusing on dementia and the management of BPSD, should be implemented for informal carers in Sri Lanka to provide educational and supportive information.

There are no reported studies concerning the development of mHealth applications for informal carers of people with dementia in Sri Lanka [ 18 ]. To the authors’ knowledge, evidence-based data were unavailable for the researchers to understand how mHealth interventions would be accepted by informal carers of people with dementia. Information seeking models, for example, the comprehensive model of information seeking, are helpful in assessing how people use and accept mHealth applications for their health-related problems [ 32 , 33 ]. This model states that individuals’ decision to search for information is based on their desires to find information, information seeking behaviours, and the attributes of the information sources [ 32 , 33 ]. These factors can be assessed in the need analysis phase of developing an information source such as an mHealth application.

This explorative survey study was part of a large study that aimed to develop an mHealth application for informal carers of people with dementia. This study aimed to explore informal carers’ knowledge of dementia, carer burden, information sources, and previous experiences and perceptions of mHealth information seeking. In addition, carer-reported prevalence and severity of BPSD among their care recipients were exploerd.

Research questions

What is the knowledge of dementia among informal carers of people with dementia?

What is the carer-reported prevalence and severity of BPSD in people with dementia?

What is the carer burden of informal carers of people with dementia?

What is the use of mHealth applications in information seeking among informal carers of people with dementia?

What is the perception among informal carers of people with dementia about mHealth application information seeking in managing BPSD?

Methodology

Study design.

An exploratory cross-sectional survey was conducted to explore the needs related to developing an mHealth application for informal carers of people with dementia to address the requirements related to managing BPSD.

Study setting

The present multicenter study included informal carers from two psychogeriatric clinics at the National Institute of Mental Health, Sri Lanka, and the National Hospital of Sri Lanka (NHSL) (Colombo); a neurology clinic at the NHSL (Colombo); and a psychiatric clinic at the Colombo East Base Hospital, Sri Lanka.

Participants

The study population included informal carers over 18 years who delivered care for individuals diagnosed with any subtype of dementia. Family members, relatives, or friends who lived in the same household and provided care for an individual with dementia on an unpaid basis for more than three months at the time of recruitment were included. Carers who did not live with their care recipients in the same household were excluded since they may not have lived full-time with a person with dementia and may not have experienced some BPSD being prominent in the evening or nighttime. Carers who could not communicate in the Sinhala language and who had communication difficulties, such as hearing impairment and disorientation to time and place, were excluded.

Sampling and sample size

The population of Colombo was 2,477,922 in 2022, and 219,038 of whom were over 65 years old [ 34 ]. This study used the Yamane formula to calculate the sample size [ 35 ]. Using the Annual Health Bulletin of the Ministry of Health data, the total population of people with dementia in Colombo was considered to be 397 [ 26 ]. With the addition of 10% nonresponses ( n  = 20), the minimum required sample was 219 carers. A convenience sample of informal carers ( N  = 219) of people with dementia was invited.

An interviewer-administered questionnaire was used for data collection. The study variables were chosen based on previous researches [ 36 , 37 ] and the concept of information seeking [ 32 , 33 ]. The questionnaire was pretested with ten informal carers, and necessary changes were made before administering it. The study variables were arranged into eight sections. Section one included the sociodemographic data of carers: age, sex, educational attainment, marital status, work status, duration of caring, and relationship with care recipients [ 37 , 38 , 39 , 40 ]. The sociodemographic data of the care recipients included age, type of dementia and comorbidities [ 39 , 40 ].

Section two assessed informal carers’ knowledge of dementia using the 25-item Dementia Knowledge Assessment Scale (DKAS) [ 41 ]. This 5-point Likert scale comprises four subscales: “ causes and characteristics , communication and behaviour , care considerations and risks and health promotion ”. This study used the Sinhala-translated version of the DKAS (available at https://www.utas.edu.au/wicking/research/distinct-projects/dementia-knowledge-assessment-scale-registration ). A Cronbach’s alpha of 0.71 demonstrated the acceptable reliability of the DKAS for the present study participants.

In section three, the prevalence of BPSD among care recipients with dementia was assessed using the 12-item Neuropsychiatric Inventory Questionnaire (NPI-Q) (α = 0.88) [ 42 ]. The prevalence and severity of BPSD were assessed. With prior permission, translation and cultural adaptation of the NPI-Q were performed following the copyright authors’ guidelines [ 43 ]. The psychometric properties of the translated Sinhala version (NPI_Q_Sinhala) were assessed by checking the content validity index (CVI), face validity and Cronbach’s alpha. Cronbach’s alpha was acceptable (0.79) [ 44 ].

In section four, the Zarit Burden Interview (ZBI) (a screening version with 4 items) (α = 0.79) was used to assess the carer burden [ 45 ]. The correlation between the 22-item version and the screening versions was reported to be between 0.83 and 0.93 [ 45 ]. The ZBI is a five-point Likert scale. A score of eight or more indicates the cut-off point for a high carer burden [ 45 ]. This study used the Sinhala version of the ZBI [ 30 ]. The Cronbach’s alpha of the ZBI scale (0.87) was acceptable in the present study.

Section five assessed the frequency of dementia-related information seeking from different sources in the past three months using a Likert scale ( never , sometimes , often ). The information sources included healthcare professionals (e.g., doctors, nurses, and other healthcare professionals), family or friends, the internet, and smartphones. Section six assessed whether carers owned smart devices such as smartphones, tablets, iPads and smartwatches [ 37 ]. The experience of using smartphone technology and the frequency and time spent on smartphones were assessed in section seven [ 37 ].

Section eight assessed carers’ perceptions of smartphone technology for information seeking regarding readiness, usefulness and confidence in using the mHealth application. Two questions assessed perceived readiness: (i) “I have time to learn it to find health information from a smartphone if I have a smartphone” ( would not learn , might or might not learn , definitely learn) and (ii) “I can spend money to find health-related information using a smartphone” ( would not spend , might or might not spend , definitely spend) [ 46 ]. Perceived usefulness was assessed using a 5-point Likert scale: “Finding health information through a smartphone would be “very useless , useless , somewhat useful , very useful , no idea” [ 46 ]. Moreover, confidence in mHealth application information seeking was assessed: “Finding health information through a smartphone would be very inconvenient , inconvenient , convenient , very convenient , no idea” [ 46 , 47 ].

Data collection

The study was conducted between August 2022 and February 2023. This study was approved by the National Institute of Mental Health, Sri Lanka; NHSL (Colombo); and Colombo East Base Hospital, Sri Lanka. The interviews were conducted at the clinic premises. During data collection, the nurse-in-charge/nurses of the clinics introduced the researcher to carers before the data collection. In addition, carers’ telephone numbers were collected from the clinics, and they were invited over the phone. Consequently, some interviews were conducted at the participants’ homes since they faced difficulties attending the clinics. The participants were provided with written information, and written informed consent was obtained before data collection. The first researcher (TJ) and two trained registered nurses collected the data. Interviewer-administered interviews were conducted to fill out the questionnaires used in this study. The duration for completing the questionnaire was approximately 15–20 min.

Statistical analysis

The Statistical Package for Social Sciences software (SPSS) version 25 was utilised for the data analysis. The first researcher manually checked the data for accuracy and completeness (TJ), followed by performing frequency tests in SPSS. Data cleaning was conducted before the analysis. First, listwise deletion was performed. Thus, individual cases from the data set were excluded if more than 5% of the values were missing. Second, single value imputation using means was used to replace missing data that were less than 5% within a row; as a result, 1–3 missing values of a few items were filled using means. Normality was assessed for the scale data by the Shapiro‒Wilk test, for which p  > .05 indicated statistical significance. The DKAS data showed a normal distribution; however, the ZBI and perceived severity of BPSD data were not normally distributed.

The following descriptive statistics were computed: (i) frequencies and percentages for categorical variables (e.g., sociodemographic information; item-level results of the questionnaire; and binary outcomes of knowledge, burden, the perception of using smartphone technology for information seeking); and (ii) means and standard deviations (e.g., age and normally distributed data, including the DKAS and subscales of the DKAS) or medians (e.g., nonnormally distributed data, including the NPI-Q and ZBI) for the continuous variables.

Knowledge concerning dementia was transformed into a binary outcome variable using the 60th percentile [ 48 ]: sufficient or insufficient knowledge . The relationships between knowledge scores and sociodemographic groups were analysed using parametric tests: independent t-tests/ANOVA. Moreover, the differences between sociodemographic factor groups and nonnormally distributed data (burden score) were computed using Mann‒Whitney ( U )/Kruskal‒Wallis ( H ) tests. Spearman correlation (r s ) was calculated to examine correlations between ordinal variables and nonnormally distributed variables, including carer burden scores and BPSD prevalence/severity scores. Pearson’s chi-square test was computed to explore the associations of the binary outcome of the usefulness of mHealth health information seeking with categorical variables, including knowledge of dementia, the perceived severity of BPSD, carer burden, smartphone ownership, readiness to spend time and readiness to spend money on mHealth application information seeking, and the sociodemographic details of the carers. The level of significance (p value) was set at 0.05.

Demographic and clinical characteristics

Among the 219 invited informal carers, 203 responded, representing 92.7% of the response rate ( n  = 9 missing data; n  = 7 refused to participate). The mean age of the informal carers was 53.04 ± 13.79 years, and the mean age of individuals with dementia was 72.9 ± 9.24 years. Almost all carers (93.1%) were unaware of the subtype of dementia of their care recipients. The sociodemographic information of the carers and care recipient dyads is shown in Table  1 .

Knowledge of dementia

The respondents obtained an overall mean score of 17.60 ± 7.12 out of 50 in the DKAS, indicating a low level of dementia knowledge. The categorisation of knowledge (low and high levels) revealed that the majority (64%) demonstrated low levels of knowledge. The standardised mean scores for the DKAS and its subscale are reported in Table  2 . Supplementary material 1 shows the carers’ item-level knowledge.

Carer burden

The median ZBI-04 score was 5 out of 16 (Table  2 ). In the sample, one-third of respondents (35%) experienced a high level of burden. Approximately half of the respondents (53.7%) reported experiencing a low carer burden, and 11.3% of informal carers had not experienced a carer burden.

Carer-rated prevalence and severity of BPSD

The descriptive analyses of the prevalence and severity of BPSD in the care recipients of the study participants based on the NPI-Q-Sinhala are displayed in Table  3 . The median BPSD was 6 out of 12 (range, 0–12). Most care recipients (97%) had at least one BPSD, and 4% had all BPSD assessed. The most prevalent symptoms were nighttime behaviours (66%), apathy/indifference (64%), agitation (61.1%), and irritability (60.6%), and the least common symptom was elation (approximately 25%). The median BPSD severity score was 11 out of 36 (range, 0–31). The severity of each BPSD is reported in Table  3 .

Sources of dementia information seeking

Significantly, a few informal carers reported often having information on dementia from the internet (15.3%) and smartphones (9.4%). Their primary information sources were doctors, nurses, and other healthcare professionals (73.9%). Table  4 shows the frequency of information obtained through different sources.

Experience in using smartphone applications

Nearly two-thirds of informal carers (63.5%) owned smartphones. Fewer than half of them (41.4%) used different mobile applications, and approximately 15% used mHealth applications, including applications concerning physical fitness, COVID-19, diabetes mellitus, hypertension, food intake, and menstruation. None of them used dementia-related mHealth applications. Table  4 illustrates the use of mobile applications and the frequency and time spent on these applications.

Perceptions of mHealth application information seeking in managing BPSD

Table  4 presents carers’ perceptions of using smartphone technology for information seeking. Approximately half of the respondents indicated that they could afford the time to learn about mHealth applications (52.7%) and money for mHealth application information seeking (46.8%). The majority perceived that mHealth applications would be useful (83.2%). Approximately two-thirds (67%) of the participants believed that seeking health information on smartphones would be convenient.

Factors affecting the knowledge and carer burden of informal carers

Table  5 presents group differences in knowledge scores based on sociodemographic variables. Knowledge score differences were observed based on age category ( p  < .001) (the highest score in those aged less than 25), educational group ( p  = .018) (the highest score in those with more than secondary education), and relationship with their care recipient group ( p  = .031) (the highest score in mothers/fathers).

Burden scores significantly differed among carers in various work situations ( p  = .025) (highest score in the self-employee group) (Table  5 ). There were no significant differences in burden scores among the remaining sociodemographic variables.

Significant positive correlations between BPSD incidence and carer burden ( r s = 0.376, p  < .001) and between BPSD severity and carer burden ( r s = 0.407, p  < .001) were observed (Table  6 ).

Factors affecting the perceived usefulness of mHealth application information seeking

There was a significant relationship between the perceived usefulness of mHealth application information seeking and carer age ( p  < .001), knowledge of dementia ( p  = .041), educational attainment ( p  < .002), smartphone ownership ( p  < .001), readiness to spend time seeking mHealth application information ( p  < .001), and readiness to spend money seeking mHealth application information ( p  < .001) (Table  7 ). Table  7 shows that most carers across any age group perceived that mHealth would be useful for information seeking. Moreover, most carers at any educational level perceived that mHealth would be useful for them. Of the participants with sufficient knowledge of dementia ( n  = 130), 80% perceived that mHealth would be useful.

This study examined the needs related to developing an mHealth application for informal carers of people with dementia. To the best of our knowledge, this is the first need-analysing study for developing an mHealth application focused on informal carers of people living with dementia in Sri Lanka.

The current study explored informal carers’ educational needs in relation to dementia knowledge. They demonstrated insufficient knowledge of dementia. Informal carers in some other countries also demonstrated low levels of dementia. For example, carers in Spain had a low dementia knowledge score (score percentage: less than 50%) [ 49 ]. A study in Israel reported that informal carers of patients with Alzheimer’s disease displayed poor levels of knowledge on the prevalence, causes and symptoms of dementia [ 50 ]. The current study revealed that carers were not aware of the correct types of dementia. However, they expressed their concern about the comorbidities (other chronic diseases) of their loved ones. The lack of awareness of the subtypes of dementia might be attributed to the lack of information received from healthcare professionals or the lack of information available to the general public. Moreover, among the subscales of the DKAS explored, the carers of the present study showed the lowest knowledge of the communication and behaviour subscale. This subscale is directly related to the context of this study, BPSD. Given that the interaction between family carers and care recipients affects BPSD [ 51 ], less communication between these parties influences the severity of BPSD among those affected by dementia [ 52 ].

Therefore, the initiation of educational interventions for informal carers of people with dementia is timely. Focusing on the general knowledge of dementia and the therapeutic communication skills of informal carers would increase the magnitude of an educational intervention related to BPSD. The literature indicates that informal carers seek information on general knowledge of dementia and diagnosis, the progress of dementia, behavioural changes and caring strategies, available treatments, side effects of medications, and future care [ 18 , 53 , 54 ].

In contrast to the current study, researchers revealed greater dementia knowledge among informal carers of people with dementia in India [ 55 ] and the United Kingdom [ 56 ]. The greater dementia knowledge of carers might be attributed to the availability of information sources, such as the internet, local events and conferences from reliable sources such as Alzheimer’s Society, and research findings [ 56 ]. A recent systematic review confirmed that internet-based sources are a highly utilised means of seeking information for informal carers of people with dementia [ 57 ]. Nevertheless, informal carers of people with dementia in Sri Lanka rarely use remote access to information seeking through the internet or mHealth applications. A possible explanation for the low levels of dementia knowledge among informal carers in this study may be related to the lack of familiarity with timely available information sources, such as the internet, despite their high educational level. Furthermore, most of the study participants were from the main capital (Colombo) of Sri Lanka. According to the researchers’ knowledge, most dementia services are concentrated in the Colombo District. Therefore, informal carers in remote districts might face challenges in finding services and acquiring the required knowledge compared to carers in the capital city. Therefore, the findings of the current study suggest a need to address educational information through the internet or smartphone-based interventions.

Notably, caring for BPSD is highly challenging for informal carers. This study revealed that the prevalence of BPSD was high among care recipients. Consistent with previous studies [ 58 , 59 ], this research revealed that most people with dementia had at least one BPSD. Similar to our findings, a previous systematic review reported common BPSD, such as nighttime behaviours, apathy, agitation/aggression, and irritability, among those affected [ 60 ]. Moreover, agitation, repetitive behaviours and apathy were found to affect the daily living activities and social life of individuals with dementia [ 61 ]. Consequently, these BPSD need to be prioritised when planning educational interventions.

The current study explored the need for supportive information with reference to carer burden. The literature has reported that a high carer burden among informal carers was associated with BPSD than with cognitive decline [ 62 ]. Most of the participants in this study reported a low or high carer burden, while most informal carers were middle-aged females. Similarly, a high percentage of mild to severe carer burden was revealed by a previous study conducted in Sri Lanka [ 30 ]. The literature has reported that female carers experienced more carer burdens and adverse health consequences than male carers did [ 63 ]. Similar to the current findings, a positive correlation was revealed between the prevalence of BPSD and carer burden [ 59 , 64 ]. Therefore, carers who are providing care for BPSD need emotional support and information on managing the carer burden [ 18 , 53 ]. In light of the high information demands of informal carers of people with dementia, difficulties associated with finding supportive information were reported in a previous study [ 65 ].

A small percentage of carers in the current study reported no carer burden. A review article reported that carers in Asian countries were highly influenced by their culture; for example, the influence of Buddhist culture might lead to accepting or enduring the caring experience caused by dementia [ 66 ]. Future studies can focus on how culture affects carer burden and resilience among carers in Sri Lanka.

Most of the study participants’ dementia-related information sources were health professionals (e.g., nurses and doctors). These carers rarely used mHealth applications to seek information about dementia. Nonetheless, carers in old age, those who had only primary education, or those who had insufficient knowledge of dementia also perceived mHealth applications to be useful. Although there is a paucity of mHealth application usage, we found an association between smartphone ownership and the perceived usefulness of smartphone health information seeking. Knowledge of dementia was also associated with the perceived usefulness of mHealth application information seeking among the present study participants. In line with the results of the current study, the literature revealed that informal carers were willing to accept this time-efficient and easily accessible smartphone/mHealth technology [ 10 , 39 ]. The literature supports factors affecting mHealth application information seeking behaviours, such as functionality, perceived usefulness, ease of use, mHealth credibility, cost, and advanced educational levels of carers [ 67 , 68 ]. Previous researchers have reported that informal carers utilise telehealth interventions more frequently if they are familiar with the technology [ 69 ]. Seeking information from digital sources, such as mHealth applications and internet-based websites, is highly efficient and cost-effective [ 10 , 69 ]. Given the perceived usefulness and familiarity with smartphones among a substantial percentage of carers in this study, it can be assumed that they may be ready to use mHealth applications. Despite this, the literature revealed the need to explore cultural appropriateness for health interventions [ 70 ].

Our results suggest that informal carers benefit from educational information on dementia and BPSD and supportive information on carer well-being in managing highly prevalent clusters of BPSD in their care recipients. The next phase of this larger project of developing an mHealth application is to explore informal carers’ experiences, carer burdens and information needs in managing BPSD and their preferences regarding the layout and features of a potential mHealth application. The findings of the present study are important for researchers in developing an interview guide for qualitative studies.

Limitations

The paucity of dementia statistics in the current literature and the possibility of underdiagnosis due to the lack of screening might prevent researchers from identifying the correct dementia population in the Colombo District. Data collection at clinics was challenging due to the difficulties faced by carers in attending the clinics or staying in the clinic with their care recipients for extra time. Consequently, selection bias, that is, the recruitment of a convenience sample of participants from selected clinics in the main capital of Sri Lanka, affects the generalisability of the findings. Moreover, we did not assess any confounding factors, such as the stage of dementia or formal diagnosis of BPSD, affecting the relationships among the study variables, leading to confounding bias. For example, the literature has reported that the stages of dementia are associated with carer burden [ 71 , 72 ]. In the current study, we were unable to collect data related to the exact stage of dementia, as there were no documented details on the stage of dementia in patient records, adding a limitation to this study. Assessments of the prevalence and severity of BPSD by informal carers may lead to recall bias and subjective interpretations of informal carers.

Conclusion and recommendation

In summary, informal carers of people living with dementia are primarily middle-aged females, and the prevalence of BPSD is high among their care recipients. The requirements for educational interventions for informal carers of people with dementia were explored in the current study based on their low knowledge of dementia and high carer burden. The educational interventions should focus on general information on dementia, specialised information on BPSD, and maintaining carer well-being. Even though mHealth literacy was at a poor level, most informal carers owned smartphones, and their perception of proposed mHealth information seeking was positive across cohorts of diverse ages and educational levels. Our findings suggest opportunities and challenges for mHealth information seeking among study participants.

The development of sustainable evidence-based mHealth applications is recommended. However, it is necessary to explore informal carers’ specific knowledge of BPSD and unmet information requirements in managing their care recipients’ behavioural and psychological symptoms. Conducting awareness programmes for informal carers of people with dementia with the development of the mHealth application is suggested, given the nonavailability of mHealth applications concerning dementia in the local setting.

Data availability

This study is part of an ongoing PhD project of the principal investigator. Therefore, the data will be made available from the corresponding author upon reasonable request.

Abbreviations

Behavioural and Psychological Symptoms of Dementia

Content Validity Scale

Dementia Knowledge Assessment Scale

Diagnostic and Statistical Manual of Mental Disorders

International Classification of Diseases

National Institute of Neurological and Communicative Diseases and Stroke/Alzheimer’s Disease and Related Disorders Association

National Hospital of Sri Lanka

Neuropsychiatric Inventory Questionnaire

Neuropsychiatric Inventory Questionnaire - Sinhala version

Zarit Burden Interview

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Acknowledgements

The researchers wish to express gratitude to the study participants and the clinic staff who supported the data collection.

This research was conducted without any grants from either government, commercial, or not-for-profit-sector sponsoring agencies.

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Thilanka Jagoda & Samath D. Dharmaratne

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Thilanka Jagoda

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All authors have seen and approved the manuscript and contributed significantly to the manuscript. TJ: Conceptualization, Methodology, Tool validation, Resources, Data collection, Formal analysis, Writing – review & editing, Project administration, Final approval of the article. SD: Conceptualization, Methodology, Supervision, Writing – review & editing, Final approval of the article.  SR: Conceptualization, Methodology, Supervision, Writing – review & editing, Final approval of the article.

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Jagoda, T., Dharmaratne, S. & Rathnayake, S. Designing an mHealth application for informal carers concerning the management of behavioural and psychological symptoms of dementia: a need analysis survey. BMC Health Serv Res 24 , 930 (2024). https://doi.org/10.1186/s12913-024-11273-9

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Received : 27 April 2024

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BRIEF RESEARCH REPORT article

Organizational readiness for change towards implementing a sepsis survivor hospital to home transition-in-care protocol.

• 1 NewCourtland Center for Transitions and Health, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, United States
• 2 Leonard Davis Institute of Health Economics, The Wharton School, University of Pennsylvania, Philadelphia, Pennsylvania, United States
• 3 Biostatistics Evaluation Collaboration Consultation Analysis (BECCA) Lab, School of Nursing, University of Pennsylvania, Philadelphia, United States
• 4 Department of Biobehavioral Health Sciences, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, United States
• 5 M. Louise Fitzpatrick College of Nursing, Villanova University, Villanova, Pennsylvania, United States
• 6 Center for Home Care Policy & Research, VNS Health, New York, NY, United States

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Organizational readiness for change, defined as the collective preparedness of organization members to enact changes, remains understudied in implementing sepsis survivor transition-incare protocols. Effective implementation relies on collaboration between hospital and post-acute care informants, including those who are leaders and staff. Therefore, our cross-sectional study compared organizational readiness for change among hospital and post-acute care informants.We invited informants from 16 hospitals and five affiliated HHC agencies involved in implementing a sepsis survivor transition-in-care protocol to complete a pre-implementation survey, where organizational readiness for change was measured via the Organizational Readiness to Implement Change (ORIC) scale (range 12-60). We also collected their demographic and job area information. Mann-Whitney U tests and linear regressions, adjusting for leadership status, were used to compare organizational readiness of change between hospital and post-acute care informants.Eighty-four informants, 51 from hospitals and 33 from post-acute care, completed the survey.Hospital and post-acute care informants had a median ORIC score of 52 and 57 respectively.Post-acute care informants had a mean 4.39-unit higher ORIC score compared to hospital informants (p = 0.03).Post-acute care informants had higher organizational readiness of change than hospital informants, potentially attributed to differences in health policies, expertise, organizational structure, and priorities. These findings and potential inferences may inform sepsis survivor transition-in-care protocol implementation. Future research should confirm, expand, and examine underlying factors related to these findings with a larger and more diverse sample. Additional studies may assess the predictive validity of ORIC towards implementation success.

Keywords: Sepsis survivors, Transitions in care, Organizational readiness for change, implementation science, Healthcare system, Home Health Care (HHC)

Received: 22 May 2024; Accepted: 14 Aug 2024.

Copyright: © 2024 Sang, Quinn, Stawnychy, Song, Hirschman, You, Pitcher, Hodgson, Garren, O'Connor, Oh and Bowles. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Elaine Sang, NewCourtland Center for Transitions and Health, School of Nursing, University of Pennsylvania, Philadelphia, PA 19104-4217, Pennsylvania, United States

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Hospital-At-Home Leader Medically Home Names New CEO

Medically Home’s board of directors has appointed a new president and CEO. Graham Barnes will take the helm of the company, effective immediately.

“[Graham Barnes’] track record of growing and nurturing health care companies gives us deep confidence in his ability to elevate Medically Home and build on the strong market position that has been achieved to date,” Maneesh Goyal, chairman of the board of directors for Medically Home, and COO of the Mayo Clinic Platform at the Mayo Clinic, said in a press statement. “We would also like to extend our heartfelt gratitude to Rami Karjian for his dedication and leadership bringing Medically Home to where it is today.”

Boston-based Medically Home partners with organizations to help them deliver hospital-at-home services, as well as emergency department services in the home. The company coordinates in-home visits, sets up the proper technology and equipment, and pulls together all of the necessary resources.

In April, Boston Medical Center rolled out a new hospital-at-home program . The health system launched this in collaboration with Medically Home.

Later that month, BrightStar Care also announced that they would provide primary in-home clinician and transport services with Medically Home.

As part of the leadership transition, former CEO Rami Karjian will remain at Medically Home in a new advisory role, along with co-founders Raphael Rakowski and Andy Lipman.

“Both Medically Home and the overall movement to decentralize care are at an inflection point,” Karjian said in the press statement. “Medically Home’s platform has already successfully cared for more than 40,000 patients and we expect the market to accelerate with new opportunities in the future as Graham takes the helm. We are proud of all that has been done establishing this new model of patient care delivery and believe we have set a new standard in patient care that will endure. We welcome the next chapter for Medically Home under Graham’s proven leadership.”

Barnes has been the CEO of multiple companies, including HealthWyse, HealthyCircles and and Concerro Inc. He has served in multiple advisory roles over the last few years as well.

“I am honored to be appointed to lead Medically Home and advance its innovative model of care,” Barnes said in the statement. “Medically Home has built a safe and robust clinical, logistics, and operational model that underpins acute care at home and post-acute care at home for more than 20 organizations. There is tremendous potential to continue partnering with leading healthcare organizations to provide patients and the clinicians who serve them with our scalable care model.”

Companies featured in this article:

Medically Home

Joyce Famakinwa

Joyce Famakinwa is a Chicago area native who cut her teeth as a journalist and writer covering the worker’s compensation industry and creating branded content for tech companies and startups. When she isn’t reporting the latest in home health care news, you can find her indulging in her love of vintage clothing, books, film, live music, theatre and reality tv.

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The Future of Home Health Care

Steven landers.

1 Visiting Nurse Association Health Group, Red Bank, NJ, USA

Elizabeth Madigan

2 Case Western Reserve University, Cleveland, OH, USA

3 Johns Hopkins School of Medicine, Baltimore, MD, USA

Robert J. Rosati

Barbara a. mccann.

4 Interim HealthCare Inc, Sunrise, FL, USA

Rodney Hornbake

5 Kindred Healthcare, Essex, CT, USA

Richard MacMillan

6 LHC Group, Inc, Lafayette, LA, USA

7 Amedisys Inc, Baton Rouge, LA, USA

Kathryn Bowles

8 University of Pennsylvania School of Nursing, Philadelphia, PA, USA and Center for Home Care Policy and Research, Visiting Nurse Service of New York, New York City, USA

Dawn Dowding

9 Columbia University, New York, NY, USA and Center for Home Care Policy and Research, Visiting Nurse Service of New York, New York City, USA

10 Alliance for Home Health Quality and Innovation, Arlington, VA, USA

Tracey Moorhead

11 Visiting Nurse Associations of America, Arlington, VA, USA

Sally Rodriguez

12 Avalere Health LLC, Washington, DC, USA

Erica Breese

The Future of Home Health project sought to support transformation of home health and home-based care to meet the needs of patients in the evolving U.S. health care system. Interviews with key thought leaders and stakeholders resulted in key themes about the future of home health care. By synthesizing this qualitative research, a literature review, case studies, and the themes from a 2014 Institute of Medicine and National Research Council workshop on “The Future of Home Health Care,” the authors articulate a vision for home-based care and recommend a bold framework for the Medicare-certified home health agency of the future. The authors also identify challenges and recommendations for achievement of this framework.

Introduction

America is experiencing a dramatic shift in demographics, and in 2019, people older than 65 years will outnumber those younger than five. As Americans age and live longer, increasing numbers of them will live with multiple chronic conditions, such as diabetes or dementia, and functional impairments, such as difficulty with the basics of life like mobility and managing one’s household. One of the greatest health care challenges facing our country is ensuring that older Americans with serious chronic illness and other maladies of aging can remain as independent as possible. Our success with this challenge will help ensure that Americans age with dignity in a manner that meets their expectations, preferences and care needs. The financial health of our federal and state governments also hangs in the balance because of the implications for Medicare and Medicaid costs. Meeting this challenge will require envisioning the potential value of home-based health care, creating a pathway for home-based care to maximize its potential, and integrating it fully into the U.S. health care system.

We propose an initial vision and bold first steps in this article to support the transformation of home health agencies and home-based care and its recognition in the overall health care system. In this article, the terms “home-based care” and “home health care” have distinct meanings. “Home-based care” refers to the spectrum of services provided in the home to support patients, including caregiving and personal care services, skilled services (such as nursing and therapy) provided in the home, home-based primary care, hospital-at-home, and even hospice when it is provided at home. “Home health care” in this article refers to Medicare skilled home health care, which is paid for under the Medicare home health benefit and delivered by Medicare-certified home health agencies. Home health care is one type of home-based care.

The article builds upon the themes that arose at an Institute of Medicine (IOM) and National Research Council (NRC) workshop on the “Future of Home Health Care,” which was held on September 30 and October 1, 2014. 1 The research and discussion in this article are intended to be a call for action among home health agencies and home-based care providers, policy makers, providers, patients, caregivers, and others interested in the field. The article seeks to clarify and define the spectrum of home-based care, the relevance of this spectrum to overall health care, and the critical roles, characteristics, and capabilities of the home health agency of the future. The article also identifies key needs to address to enable home health agencies to serve patients and the health care system in the future.

Of foremost importance is leadership to build toward a clarified vision for high-value home health care in the U.S. health care system. The authors seek to provide a strategic framework to enable home health care to pursue concrete, meaningful change. The history of home-based care is at least as old as the beginnings of the nursing and medical professions given that health care delivered in the home (in the form of house calls) was the standard of practice, long before the development of hospitals and office-based medical care. The changes that this report seeks to propel are the major next steps in the long history of home-based care.

Background: Factors Driving Change

Demographic impetus and cost.

The graying of the U.S. population is a major impetus for change in health care. According to the Medicare Payment Advisory Commission (MedPAC), Medicare enrollment is projected to increase by more than 50% over the next 15 years from 54 million beneficiaries today to more than 80 million in 2030. 2 This reflects an overall aging of the United States population: the Census projects that by 2030, the proportion of U.S. residents older than 65 will have nearly doubled from 2010 (20% vs. 13%). 3 Among the oldest Americans, the Census predicts that the population age 85 and above will double by 2036 and triple by 2049. 2

Although by some accounts the upcoming Medicare population is healthier than previous generations—life expectancies are longer and smoking rates have declined—baby boomers have higher rates of obesity and diabetes compared with previous generations. 4 According to a 2002 study, 88% of people 65 years or older have at least one chronic condition, with a quarter of these having four or more conditions. 5 The effect of these chronic conditions on spending is massive: Estimates suggest that chronic illness accounts for three quarters of total national health care expenditures. 4 As the number of older beneficiaries with multiple chronic conditions continues to rise, providing care in the most effective and efficient setting will become even more critical.

Health care delivery system reform: The Triple Aim and HHS goals

With demographic trends and spending concerns as a backdrop, the Medicare program began to emphasize achievement of the “Triple Aim” in 2009. A framework initially conceived by the Institute for Healthcare Improvement, but now almost universally accepted in health care policy and delivery, the Triple Aim has focused efforts to innovate in the Medicare program and has propelled considerable change. The Triple Aim declares that to improve the U.S. health care system, it is vital to pursue three goals simultaneously:

• Improving the patient experience of care (including quality and satisfaction);
• Improving the health of populations; and
• Reducing the per capita cost of health care. 6

The Triple Aim has been used by policy makers and other leaders in health care delivery to focus their goals in reforming the health care delivery system.

Policy movement toward achievement of the Triple Aim can be seen in the many initiatives undertaken by the Center for Medicare and Medicaid Innovation (CMMI), and in the time-specific goals to move Medicare reimbursements from volume to value that the secretary of the U.S. Department of Health and Human Services (HHS) announced in early 2015. HHS’s goals are twofold:

• To tie 30% of traditional (fee-for-service [FFS]) Medicare payments to quality and value through alternative payment models (APMs; including bundled payments or Accountable Care Organizations [ACOs]) by the end of 2016 and 50% by the end of 2018 and
• To tie 85% of all traditional payments to quality or value by 2016 and 90% by 2018 through programs such as Hospital Value-Based Purchasing Program (HVBP) and Hospital Readmissions Reduction Program (HRRP). 7

HHS has made strides toward achieving these goals. While quality programs in the Affordable Care Act (ACA) primarily focused on hospitals, recent legislation and regulatory actions have expanded quality and value programs to post–acute care with the skilled nursing facility (SNF) value-based purchasing program and the home health value-based purchasing demonstration. In addition, post–acute care providers are increasingly finding themselves affected “downstream” by programs directed at other entities, such as bundled payments and hospital value-based purchasing. A summary of some of the most recently developed current and future mandated quality and value programs for Medicare providers and the legislation creating them are provided in Figure 1 . 8 A description of the estimated impact of these alternative payment models is provided in Figure 2 .

Medicare value-based programs and authorizing legislation.

Source . Avalere Health, 2016.

Note . HHRP=Hospital Readmissions Reduction Program; HH-VBP = Home Health Value Based Purchasing model.

Medicare alternative payment models impact.

Source. Avalere Health (2016).

Note. ACO = accountable care organization; BPCI = Bundled Payments for Care Improvement Initiative; MSA = Metropolitan Statistical Area.

a Avalere Analysis of BPCI participant list.

There are also more established programs that leverage home-based care. Examples include the Veterans Administration’s Home-Based Primary Care program, which administers longitudinal interdisciplinary home-based medical care to veterans in need of skilled services, case management, or activities of daily living (ADLs), 9 and the Program of All-Inclusive Care for the Elderly (PACE), a Medicare and Medicaid program in which PACE organizations contract with providers and specialists to offer nursing home-level medical and supportive services in the community. 10

Misaligned incentives persist and block progress

Despite these new and existing initiatives, misalignment of incentives remains common in traditional Medicare and in the health care system overall. This misalignment remains a barrier for better care coordination and continues to be a driving force behind initiatives that focus on the Triple Aim and HHS’s goals. A further challenge is that the vast majority of the above-mentioned APMs and value-based programs pursued to date are built on FFS architecture. In other words, the APMs pursued tend to use delivery models that are triggered by the delivery of certain services or by a certain episode of care that is paid for under traditional Medicare, with a retroactive opportunity for shared savings or risk against a historical cost target or benchmark; few, if any, APMs are truly pursuing population-based payment. As a result, even within many of these APMs, many of the core issues with traditional Medicare persist, hindering progress toward the Triple Aim.

Consumers driving care

As patients become increasingly engaged with their care and the health care system strives to empower patients in their care, patient preference and satisfaction are increasingly becoming key measures of performance. When asked about their care preferences, older Americans overwhelmingly articulate a desire to age in place and receive care at home rather than in institutional settings. A 2010 AARP (formerly the American Association of Retired Persons) survey found that nearly three quarters of a survey population of those age 45+ strongly agreed with the statement, “what I’d really like to do is stay in my current residence for as long as possible.” 15 This is echoed in the last stages of life, where the Dartmouth Atlas researchers found that more than 80% of patients say that they “wish to avoid hospitalization and intensive care during the terminal phase of life.” 16

Recognizing these preferences and the potential for home-based care to reduce care delivery costs system-wide, policies have begun to prioritize noninstitutional care settings. State Medicaid offices have led this trend toward consumer-based care. In 2013, in the context of Medicaid long-term services and supports, there were more home- and community-based service providers than institutional providers, an 18% increase since 1995. 17 Medicaid expenditures for home- and community-based services have also grown significantly, reflecting the rise in use of home-based services as opposed to institutional care, more than doubling from $25.1 billion in 2002 to $55 billion in 2012. 18

Shifting to a Community- and Home-Based Model for Health Care

All of these drivers of change point to a shift in the delivery system toward clinically appropriate care in the community, with the home as a central node. 1 As illustrated in Figure 3 , technology and policy will need to shift to accommodate these changes and deliver appropriate care to patients. 1

Strategy for innovation.

Source. Eric Dishman, Intel Corporation (presented October 1, 2014, IOM-NRC Workshop on “The Future of Home Health Care”).

Note. IOM = Institute of Medicine; NRC = National Research Council; ICU = intensive care unit.

Consistent with this paradigm shift, payers and providers engaged in APMs are developing a key strategic emphasis on shifting the site of care toward the community and the home.

The spectrum of home-based care

As the health care system shifts toward additional care in the community, the spectrum of available services and supports for home-based care becomes critical. Medicare skilled home health is part of this broad spectrum of home-based care services. In this article, it is important to understand the differences in terms between “home-based care” and “Medicare skilled home health.”

As captured in Table 1 , “Medicare skilled home health” care or “home health care” refers to services offered by Medicare-certified home health agencies under the Medicare home health benefit. By contrast, “home-based care” refers to a wide array of different types of care provided in the home by a wide range of parties. The continuum of different types of home-based care delivered in the home varies in terms of different dimensions, including acuity, type of care provided, and degree of physician involvement. Home-based care includes both formal and informal personal care services, Medicare skilled home health, physician house calls, and even “hospital-at-home” services.

Home-Based Care and Medicare Skilled Home Health Care.

As captured in Figure 4 , which is drawn from the workshop summary of the IOM-NRC workshop on “The Future of Home Health Care,” it is important to note that the vast majority of services provided in the home are provided by family caregivers, sometimes referred to as “informal services.” 19 This phrase grossly underestimates the critical role family caregivers play in the care of patients at home. Particularly among patients with multiple limitations on ADLs, caregiving is crucial. Without caregivers in the home, health care at home is simply impossible for those with functional limitations. Upward of 10 to 15 million individuals receive help from family caregivers. AARP estimates that 34.2 million adults have served as caregivers in the last year alone. 18

Patients receiving home-based services and supports.

Source. Bruce Leff and Elizabeth Madigan, 2014 (presented September 30, 2014, IOM-NRC Workshop on “The Future of Home Health Care”).

Note. IOM = Institute of Medicine; NRC = National Research Council.

According to the Urban Institute’s “The Retirement Project,” in 2000, approximately 2.2 million individuals received “formal personal care services,” defined as personal care services that are paid for by various means; this increased to 2.5 million in 2010 and is projected to increase to 2.9 million in 2020. 19 Some patients may be eligible for Medicaid or other state programs that provide coverage for such services; however, there is considerable variation in such programs and their scope. Some may have private long-term care insurance that enables coverage. Still other patients may have no private or public insurance coverage for formal personal care services and may need to pay out of pocket for such services.

Approximately 3.4 million people receive Medicare skilled home health care, which supports homebound patients by providing coverage for intermittent skilled nursing and therapy services that are provided by Medicare-certified home health agencies subject to a physician’s plan of care. In 2014, Medicare spent $17.7 billion on home health care. 20

Home-based primary care and hospital-at-home are models of care that serve patients with conditions that are more acute or severe are less commonly used. The skill needed to provide the services increases accordingly. Home-based primary care is a model that makes use of home care physicians and nurse practitioners, in connection with an interdisciplinary team of professionals, including skilled home health professionals. The hospital-at-home model serves to supplant hospital admission for certain patients with intensive, hospital-level care in the home. Those receiving this highest acuity level of home-based care have been shown to experience 19% lower costs, higher satisfaction, and equal-to-better care outcomes when compared with similar inpatients. 21

In addition to these varied services along the spectrum of home-based care, it is also critical to include mention of the role of palliative care and end-of-life care. For patients that have been diagnosed with severe or serious illness, palliative care is often a core element of treatment of the patient in a holistic fashion that emphasizes function. 22 Palliative care may be delivered outside of the Medicare hospice benefit in various settings, including at home by home health agencies, or in facilities including hospitals. For many patients who use palliative care, the Medicare hospice benefit may eventually be used at home or in a facility-based setting as well. Including palliative care and hospice in the spectrum of home-based care services enables a full understanding of how care may be shifted toward the community and the home from birth to death.

Methodology

The Future of Home Health project was a multiphase project initiated by the Alliance for Home Health Quality and Innovation (the “Alliance”). As part of this project, the Alliance sponsored an IOM-NRC workshop on “The Future of Home Health Care” held on September 30 and October 1, 2014. The themes that surfaced during this workshop then became the subject of a literature review and qualitative research to further explore the key considerations for the future of home health care.

The literature review and qualitative research were commissioned by the Alliance. The work was performed by Avalere Health, an independent research firm. As a first step, Avalere Health conducted an extensive literature review of both scholarly and trade publications on the value and role of home health care. Building upon that literature review, Avalere Health conducted unstructured interviews with individuals considered key stakeholders. These key stakeholders were identified by virtue of their leadership in organizations representing patients and caregivers, or their experience as policy makers and payers. The individuals were interviewed regarding priorities to address the needs of these constituents for the future and to understand their perspectives on the role and relevance of home health care.

Specifically, Avalere Health conducted 16 interviews with key stakeholders in health policy and innovative providers throughout the fall of 2015. The key stakeholders in health policy included current and former policy makers from the Centers for Medicare and Medicaid Services (CMS; and the Innovation Center or CMMI), advocates for Medicare beneficiaries, caregivers and disease groups, and payers (large commercial and Medicare Advantage plans). Due to the sensitive nature of their positions and to promote full honesty, Avalere Health promised anonymity to the stakeholders. Appendix C at http://ahhqi.org/images/uploads/APP_C_Interview_Methodology.pdf describes the stakeholders interviewed as well as 12 questions that Avalere Health drew from as the basis for the unstructured interviews.

After completing the interviews with the key stakeholders in health policy, Avalere Health conducted interviews with a diverse array of individuals from provider organizations pursuing new and alternative models of care that leverage home health or home-based care to develop case studies and vignettes that shed light on the framework for the future of home health care. As a general reference, a case study compendium developed by the Visiting Nurse Associations of America (VNAA) was also used to better understand innovations in home health and home-based care. 33

Institutional Review Board approval was not required for this research activity because it did not meet the regulatory definition of human subjects research. This project involved interviews and information gathering about services and policies, rather than living individuals. All of the people who agreed to be interviewed were volunteers.

Limitations

This article has limitations due to the nature of the qualitative research performed. Individuals were selected for interviews based on the assumption that policy maker, payer, and consumer perspectives would be of highest priority in understanding the future of home health care. This assumption may have skewed the resulting themes by emphasizing government, payer, and consumer priorities for the future.

The unstructured interviews with key stakeholders in health policy yielded a number of key themes involving (1) the future of payment and delivery system reform and (2) the future of home health care. In the context of these interviews, “home health care” was defined as services provided under the Medicare home health benefit by Medicare-certified home health agencies.

The Future of Payment and Delivery Reform

• Payment and delivery reform is here to stay.

The interviewees emphasized that payment reform will continue in the direction of emphasizing value-based longitudinal payments where an entity—such as a hospital, physician group, or post–acute care provider—is financially responsible for services provided beyond their immediate care setting. There was consensus among interviewees that CMS will meet its goal of 50% of traditional Medicare payments through APMs by 2018. One interviewee stated that “[t]hese models are here to stay.”

• 2. No dominant model is emerging. Continued heterogeneity across markets is expected.

Key thought leaders interviewed were in consensus that no single payment and delivery model is emerging as the dominant model. There was consensus that bundling and ACOs, for example, will have an increasing role over the next 3 to 5 years; however, one model will not dominate across all markets. In general, payment reform will continue in the direction of emphasizing value-based episodic payments where an entity, such as an ACO, is financially responsible for services provided.

• 3. Greater momentum around bundling and Medicare Advantage than ACOs.

While some strongly supported bundled payment arrangements as a model for future payment and delivery reform, others noted that bundling currently represents a relatively small fraction of Medicare expenditures, which will likely remain the case for the next 3 to 5 years. For example, the Comprehensive Care for Joint Replacement (CJR) model is an expansive use of bundling for Medicare relative to the Bundled Payments for Care Improvement Initiative (BPCI), but CJR accounts for a small proportion of payments. The movement toward bundled payments suggests that CMS will be growing the base of a small percentage of payments. The interviewees also noted that continued growth of Medicare Advantage plans is expected, potentially with increased provider (i.e., hospital)-owned plans.

• 4. Locus of control (physician vs. hospital) unclear.

Key thought leaders varied in their perspectives about whether the locus of control for payment and delivery will lie with hospitals or physicians. Several key thought leaders noted that markets will likely be a hybrid of control, in which hospitals will predominate in most locations because they have more resources and market power, but other markets will have multispecialty physician practices that are sophisticated enough to succeed. For example, the CMMI was very intentional when giving hospitals control of the CJR bundles, but it is foreseeable that different entities would be in control in other clinical episodes or models.

Other key thought leaders stated that absent policy support to buttress physician practice capacity to be the convener of ACOs, hospitals will likely retain and grow control. One interviewee noted that early evidence indicates that physician-led services may lead to better outcomes, but there is not sufficient evidence to have clarity on this issue. Several interviewees also acknowledged that as hospitals increasingly acquire physician practices, the distinction may be moot.

• 5. Payment and delivery will continue to rely on FFS systems with retrospective reconciliation. No large-scale movement toward prospective, capitated models for bundling and ACOs.

Currently, almost all of the APMs involve continued FFS payment with a retrospective reconciliation. While capitation and prospective payment offers more opportunity to experiment with services covered and service delivery, key thought leaders agreed that the original Medicare payment system will not move to prospective payment system in the near future. Ultimately, the system is moving toward capitated payment, but the time frame to get there is unclear. It will be important to continue watching CMS to see how quickly the system evolves. Within 3 to 5 years, the Medicare system will still largely emphasize a retrospective shared savings model.

• 6. Flexibility greater with shared risk but limitations on innovation persist within existing FFS structure.

When providers are operating in an at-risk environment (with both upside and downside risk) and bear the consequences, then policy makers (e.g., Congress and CMS) may be more amenable to expanding or altering the home health benefit.

For example, CMS has offered waivers of certain home health benefit requirements for providers participating in APMs where they take on downside risk. CMS is willing to provide additional flexibility, including toward the home health benefit, where providers take on risk. However, providers are currently bound by the existing home health FFS payment structure, limiting potential innovation.

• 7. Home health “big winner” in payment and delivery reforms.

All key thought leaders interviewed stated that home health stands to be a “big winner” with a substantial increase in utilization as a result of payment and delivery reforms. Payment reforms create incentives for upstream referral partners to utilize home health more substantially because it is a lower cost setting of post–acute care. In addition, patients prefer to receive care at home. The economic trend more generally is toward personalized, on-demand, direct-to-consumer services; the health care industry will similarly see shifts in consumer demand for how people consume health services.

The timing of the shift toward home health is a big question, as it is currently unclear when more services will be covered in the home. However, ultimately, the system is moving toward a broader use of home health.

• 8. Lack of consensus around modifying the home health benefit.

Stakeholders and key thought leaders were not in consensus about whether to revise the Medicare home health benefit, and if so, how to redefine the benefit. A majority of interviewees thought that the Medicare home health benefit needed to be more flexible, to be provided based on patients’ care need, and more integrated with a patient’s care, that is, more integrated with the primary care physician.

Several noted that it was not politically viable to expand the Medicare home health benefit to cover more services, and others went further to suggest it was unnecessary to alter the eligibility for services covered by the benefit because payments are increasingly going to shift to bundling, ACOs, and Medicare Advantage, where entities taking on risk will have more flexibility to define home health care coverage.

Some suggested removing the homebound requirement and instead focusing on whether beneficiaries have a certain number of ADL limitations or chronic conditions. One key thought leader noted the Medicare benefit should be more “nimble,” rather than being defined by a 60-day episode.

A variety of stakeholders discussed the need for home health care that is more responsive to patients’ needs and preferences, particularly as it relates to significant unmet need for long-term care. Some acknowledged that Medicare does not provide a long-term care benefit. Others asserted that the Medicare benefit must evolve to respond to the needs of the Medicare population, which increasingly live for a period of time with a variety of ADL limitations and chronic conditions.

• 9. No single model identified for managing patients

Key thought leaders did not identify a single emerging model for managing post–acute care patients, high-risk patients, or patients with chronic conditions and long-term care needs. Some noted that there is not enough evidence in post–acute care around exactly what clinical care pathways are most effective. There is not one single post–acute care model, and it will be impossible to establish a single post–acute care model for Medicare patients because their needs and socioeconomic status are so varied.

ACO providers and hospitals in bundled payments will increasingly give attention to evidence regarding efficient, high-quality care for determining clinical care pathways and post-acute care (PAC) utilization. ACOs are concerned about the lack of evidence-based protocols for different patient populations. Managed care plans generally report having a more firm understanding of post–acute care, which they manage through selective contracting and prior authorization. However, one health plan representative stated that they are struggling to address their home health network because the industry is so fragmented.

Within Medicare FFS spending, post–acute care spending has the most variation; within post–acute care spending, home health has the most variation. Therefore, providers under pressure to manage bundles are probably going to be taking a close look at their home health utilization and network.

Several noted that the definition of rehabilitation and criteria for when rehabilitation is appropriate should be reconsidered. For example, people may need assistance with ADL limitations to avoid falls. Rehabilitation to improve mobility or speech may prevent loss of function.

• 10. Needs of community-referred beneficiaries less well understood.

Interviewees agreed that the composition and care needs of community-referred beneficiaries receiving home health under Medicare Part B are less clear.

Stakeholders varied on how they characterized the community-referred beneficiaries. Some noted that the increased number of episodes covered by Part B is indicative of the problem that the United States does not have long-term care coverage, and in this instance, the benefit may be acting as a long-term care benefit.

Stakeholders representing patients and caregivers emphasized that eligible patients sometimes have trouble accessing the benefit for the duration of the time that they would benefit from home health episodes. For example, physicians may be resistant to recertifying home health episodes for patients who do not have any post–acute care needs. Other practitioners may not recognize the eligibility of and benefit to certain patient populations, such as people with dementia. Several noted that the Part B population is where there is opportunity for innovation.

• 11. Home health agencies must adapt to the changes to Medicare payment and delivery.

Agencies will need to develop the capabilities to contract with Medicare Advantage plans and providers that are taking on financial risk. Some interviewees noted that agencies tend to focus on maximizing volume under the current episodic-payment FFS payment system, but that paradigm will quickly fade. Agencies will need to be able to articulate the value they bring to upstream referral partners, which requires being able to report on quality metrics, being able to regularly communicate with a nurse liaison, and having disease management programs.

Some interviewees suggested that the industry might undergo a period of significant consolidation. Payers and providers taking on risk will start to more carefully vet and manage their post–acute care network, including their home health agency partners. Agencies that cannot cover a large market for around-the-clock care may be excluded. The industry is currently very fragmented with many operators that may be unsuited to meeting referral partner and payer needs for a home health partner that can manage care across an episode and potentially over a large geographic area. In addition, referral partners and payers may be looking for agencies that can support patients with higher acuity postdischarge to prevent readmissions.

Linking payments to value and putting upstream referral partners (e.g., hospitals) at risk will contribute to reigning in potential fraud and abuse in home health because payers and providers will not refer patients to agencies providing unnecessary care.

• 12. Caregiver burden is a crisis necessitating a long-term care solution.

The growth in unmet home care needs, particularly for long-term care, is resulting in an increasing burden on family caregivers. Stakeholders indicated that caregivers are expected to provide medical services in the home with minimal training or advance notice. Many stakeholders noted that Medicare does not cover long-term care and Medicare coverage of home health care services should be expanded to include unskilled services and other long-term care services. However, some acknowledged that original Medicare program is a medical benefit and should not be expanded to provide a long-term care benefit.

Based on the information gained in the interviews, the IOM-NRC workshop, the literature review, and case studies, we have identified key issues and themes for future focus and synthesis. The framework and recommendations presented in the “Discussion” section of this article represent synthesis drawn from these various primary and secondary research approaches to understanding the future of home health care.

Vision and Framework for the Future of Home-Based Care

Home-based care is well positioned to drive progress toward key U.S. health care system–wide goals. As discussed, many patients prefer to receive care in the home, so the use of high-quality home-based care could support the goal of patient-centered care. Home health care is also a relatively low-cost setting of care. As the health care system grapples with high costs and expenditures, home health’s efficiency could support the goal of high-quality, low-cost care.

Despite its alignment with key goals, the home health industry must evolve to capture the opportunities stemming from changes in the health care system. Specifically, the home health industry must develop the capabilities necessary to treat higher acuity patients with broader care needs in the home and community. The spectrum of home-based care services described in Figure 5 could serve as an array of offerings that are flexibly and seamlessly leveraged depending on patient need and preference. To achieve this vision, home health agencies also need to develop new capabilities to coordinate and collaborate with other care providers, ensuring that the patient receives appropriate, high-quality care regardless of the setting or location.

Spectrum of home-based services and supports.

Source. Avalere Health, 2016.

Note. MD = Physicians; NP = Nurse Practitioners.

To allow home health agencies to fulfill this mandate to provide high-quality, efficient care as part of ongoing reforms, the regulatory environment needs to shift to allow greater flexibility for care in the home when appropriate. A variety of new and alternative health care delivery models are creating incentives for increased use of home health and home-based care, but additional flexibility would allow home-based care to be deployed in innovative ways based on patient’s needs and preferences. The following vision for the future outlines the characteristics and capabilities that would be needed to support broader use of home health, as well as some of the barriers that may inhibit the broader use of appropriate home-based care.

Although the vision for home-based care is broader than the Medicare context, it is important to understand the specific role and relevance of Medicare-certified home health agencies in achieving this goal of providing high-quality, efficient care to more beneficiaries in the community and the home. Medicare home health agencies are by no means the only stakeholder that will be key to achieving this broad vision, but this article seeks to focus on the key characteristics and roles of Medicare home health agencies as a first evolutionary step.

Today’s Home Health Agency and the Medicare Benefit

Today, Medicare-certified home health agencies are specialists in providing in-home skilled nursing and therapy services to homebound patients who (1) have had a prior hospitalization and are recovering from acute illnesses or conditions and/or (2) need community-based care management to address their chronic conditions. Home health agencies are unique as the only Medicare providers that are specifically certified to provide skilled care to beneficiaries at home for acute, chronic, or rehabilitative conditions. Home health agencies use interdisciplinary clinical teams of health professionals, including nurses, physical therapists, occupational therapists, speech-language pathologists, medical social workers, and home health aides.

The traditional Medicare program pays in separate payment systems for different health care provider and professional services. Thus, Medicare pays short-term acute care hospitals under the hospital inpatient prospective payment system, Medicare pays physicians under the physician fee schedule, and Medicare pays home health agencies under the home health prospective payment system. Each payment system is separate and unrelated to the other payment systems.

Under the home health prospective payment system, Medicare beneficiaries are eligible to receive home health care services delivered by a certified home health agency if the beneficiary is homebound, needs intermittent skilled nursing and/or therapy services, and is under the care of a physician and needs reasonable and necessary home health services that have been certified by a physician and established in a 60-day plan of care. Medicare pays for home health care services with both Medicare Parts A and B funds in 60-day episodes of care, and pays agencies by home health resource groups (HHRGs) that are based on clinical and functional status (drawn from the Outcome and Assessment Information Set [OASIS] instrument), and service use. In general, Medicare pays with Part A funds if the home health care services follow discharge from an acute care hospital, or Medicare pays with Part B funds if a physician refers the beneficiary for home health care services as part of community-based care.

Given that traditional Medicare is largely FFS (and fee for episode in Medicare home health care), it is not surprising that the federal government is now emphasizing value over volume, and coordination over fragmentation. Each provider is paid only for delivering their own services, not for delivering quality care as defined by key measures. Providers and professionals historically have not been paid to coordinate care across the continuum. Home health agencies are no exception. Notwithstanding, it is clear that the health care system is evolving toward a value-based system and that home health agencies will need to change in the future to support achievement of the Triple Aim.

As the health system evolves, home health agencies increasingly will need to partner with entities formally accepting risk and even accept risk on their own. The evolving role of Medicare home health agencies is captured in Figure 6 . This will be a gradual process as more agencies develop the capabilities to fully manage care and handle risk. As a first step, home health agencies must provide value to their partners (often other providers or payers) that are accepting risk in value-based arrangements. Going forward, home health agencies must partner with risk-bearing entities and actively manage patient care across settings, going beyond their current role. Finally, longer term, home health agencies can expand their role to formally accept risk under new payment models, sharing in potential savings and losses with their care partners.

The evolving role of Medicare home health.

Note. APMs = alternative payment models; MA = Medicare Advantage; HH = Home Health Care.

The Medicare benefit’s emphasis on skilled nursing and therapy could allow home health agencies to play a pivotal and unique role supporting patients, caregivers, and other health care providers and professionals in pursuit of the Triple Aim. Nurses and therapists could help teach patients and caregivers self-management skills, and the home health interdisciplinary team could serve as critical boots on the ground, acting as an extension of primary care practices to manage patient care in the home and community.

Home Health Care and Recent Changes in the Health Care Delivery Environment

As stated above, the interviews with key policy and health care stakeholders confirmed their unanimous belief that these payment and delivery reforms are “here to stay” and already have broad reach in the health care system. They believed that there will continue to be variation across markets as to whether Medicare Advantage, bundled payments, ACOs, or some combination emerges as the dominant risk-based model, either nationally or regionally.

As a result of the ongoing payment and delivery reforms, all key thought leaders stated that home health had the potential to be a “big winner” with substantial increases in patient volume because of its relatively low cost compared with institutional setting.

As reflected in the evaluation of the CMS BPCI, risk-bearing providers are increasingly utilizing home health care as they look to reduce total cost throughout episodes or enrollment periods. In BPCI SNF initiated episodes, overall unadjusted average Medicare payments were lower compared with comparison groups ($11,311 vs. $16,896), but “[a]verage Part A payments for home health agency services increased significantly relative to comparison group patients during the 90-day post-discharge period.” 23 If such patterns continue under the CJR demonstration, increased utilization of home health could lead to significant savings under an episode of care. An Avalere analysis of 2012 to 2013 Medicare claims data indicates that about 31% of joint replacement episodes are discharged directly to home health, compared with nearly 40% discharged to an SNF. However, when comparing the total average episode spending, Medicare spends nearly twice as much ($27,990 on average) for episodes where the beneficiary is discharged to SNF compared with those discharged to home health ($16,755; Avalere analysis of 2012 and 2013 Standard Analytic Files [SAF]; episodes initiated between January 1, 2012, and September 30, 2013; excludes Part B physician spending). We note, however, that this analysis did not control for differences in patients who receive care in nursing facilities versus home health care; the determination of whether a patient receives SNF-based or home health care after a joint replacement requires assessment of clinical appropriateness and the needs of the patient, in addition to considerations related to cost-effectiveness.

The Medicare Home Health Agency of the Future

To fulfill critical roles in the health care system, Medicare home health agencies of the future would need to have newly strengthened capabilities and characteristics. Home health agencies would need to possess key characteristics (articulated in “four pillars”) to meet “three critical roles” that the home health agency will play in the health care system.

Four pillars: Key characteristics of the home health agency of the future.

Home health agencies must develop the capabilities and workforce to achieve the following key characteristics that are organized into four pillars. Home health agencies of the future must provide care that is:

• Patient and person centered: The IOM defines patient-centered care as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions,” and includes it as one of the key components of high-quality health care. 24 Because home health is, by definition, provided in a patient’s home, it offers an optimal opportunity to identify and respond to the needs of individual beneficiaries and families. A participant in the IOM workshop on home health described this more intimate relationship as one “around the kitchen table,” where health care decisions are truly made and managed. 1 As the home health industry begins to care for patients more broadly, the industry needs to identify what constitutes person-centered home health care and how it is defined and measured.
• Seamlessly connected and coordinated: The home health agency of the future must be part of a seamless, connected and coordinated home-based care continuum, as well as being connected with primary care, and facility-based care. Many of the stakeholders interviewed highlighted the potential role that home health could play in coordinating care for beneficiaries. As health care moves toward paying for value, not volume, home health agencies must coordinate patient care and ensure successful transitions from institutional care to the home. During this transition, beneficiaries interact with a wide range of health care providers, professionals, services, supports, and suppliers, so home health agencies must have the tools to manage care across these disparate entities and coordinate care and services in the transition home. In the future, all home health agencies should have these capabilities; however, the home health agency’s care coordination activities could expand beyond coordinating care after an acute event. Home health is well positioned to manage medical care with nonmedical supports, including family and other social supports (e.g., food assistance, transportation, etc.) and provide other services such as nurse visits. As more services are provided in the home, home health agencies are a natural partner for risk-sharing entities under APMs but would need to build additional capabilities that allow them to manage care not only after an acute event but also across the care continuum.
• High quality: Home health agencies must ensure that they can consistently deliver the highest quality care for their patients. Medicare home health providers already serve a vulnerable population. Users of Medicare home health services are more likely to be older than 85, live alone, have multiple chronic conditions and ADL limitations, and generally have lower incomes than beneficiaries who do not use home health. 25 Home health is and will continue to be a critical tool in ensuring that these beneficiaries received skilled nursing and therapy services, thereby supporting the patient’s goal of remaining safely at home and out of more expensive institutional settings. While home health agencies must be able to reliably care for a wide range of patients, in the current environment, some interviews with innovative home health agencies suggested the increasing need to provide specialized care for clinical conditions, such as heart failure or major joint replacement (as required by the CJR model), particularly under condition-specific bundled payment arrangements. In other cases, gerontological expertise or palliative care may be critical competencies. With the transition to value-based care, the home health industry must be flexible and responsive to changes in patient population and consistently provide reliable, high-quality care that allows patients to get and remain at home as safely and quickly as possible.
• Technology enabled: Finally, technology is changing how health care is performed in this country. It allows patients to more easily connect with health care professionals and receive more intensive services in new settings. While this can improve access to care for many patients, it will also change the way care is delivered and chronic conditions are treated. Many of the innovative organizations Avalere Health interviewed as part of this study reported using technology, such as remote monitoring, to improve patient care, but they also noted that Medicare generally does not reimburse for this technology. Health information technology also promises to enable improved care coordination, quality, and efficiency, but home health agencies were not eligible for meaningful use incentive payments to implement electronic health records. Thus, going forward, home health agencies may face a “catch-22,” as they are expected to implement new technology without any associated reimbursement.

Three critical roles for the home health agency of the future

With these “four pillars” of characteristics in mind, and within the emerging value-based payment world, the home health agency of the future should serve three critical roles:

• Post–acute care and acute care support: Home health agencies should serve as key partners that support patients’ transition home and facilitate high-quality care in the community. When deemed clinically appropriate for the patient, home health agencies could serve as posthospital and postemergency department resources for intense episodes of skilled nursing, care coordination, therapy, and related services.
• Primary care partners: Home health agencies should be partners with longitudinal, outpatient primary care medical homes and home-based primary care, with responsive skilled nursing, care coordination, therapy, and related services during time-limited episodes where care recipients need an escalation in home-based care to avoid hospitalization or other undesired outcomes. Home health agencies should also provide limited ongoing skilled nursing services to enable ongoing primary care in the community (e.g., providing catheter care, ostomy care, and so forth, to support primary care efforts to enable patients to stay healthy at home).
• Home-based long-term care partners: Home health agencies should be partners in home-based long-term care and social support models (i.e., formal and informal personal care providers) with responsive skilled nursing, therapy, and related services during episodes where care recipients need a brief escalation of home-based care to avoid hospitalization or institutionalization. Occasionally, home health agencies should provide limited ongoing skilled nursing services to that enable ongoing long-term care in the community (e.g., catheter care, ostomy care, etc.).

The home health agency of the future increasingly has new payment incentives and shared savings contracts for performing these roles capably and efficiently. In many instances, the home health agency of the future is structurally and formally more connected (as the owners, partners, or subsidiaries) of entities that integrate a range of home-based services beyond home health agency care.

Capabilities

In the context of the above-mentioned four pillars and three critical roles, home health agencies must develop new capabilities and business models to maximize their potential as a high-quality provider within the financial constraints that are inherent in most Medicare APMs. Figure 7 captures the overall framework for the future of home health care, which hinges on the home health providers’ ability to provide broader services allowing them to keep high-risk beneficiaries safely in the home for as long as possible. In addition to the proven expertise of providing skilled care in the home, agencies may be responsible for offering services to high-risk beneficiaries that substitute for institutional care, prevent unnecessary acute care utilization, improve patient experience and adhere to patient preference for care in the home, and maintain function and clinical condition for as long as possible.

Framework for home health of the future.

Note. ACO = accountable care organization.

A subset of home health providers are already developing these capabilities and can be seen as harbingers of the future for how home health providers may ultimately progress and experience risk-based payments. Case studies highlighting innovative agencies can be found in Appendix A at http://ahhqi.org/images/uploads/APP_A_Case_Studies.pdf . In the future, these types of agencies and activities should become the norm, rather than the exception. Vignettes that illustrate the key roles, characteristics, and capabilities of the home health agency of the future can be found in Appendix B at http://ahhqi.org/images/uploads/APP_B_Vignettes.pdf .

Interviews with providers suggest that some home health agencies are finding solutions and promoting value-based care by leveraging existing capabilities and partnering to improve patient experience and outcomes. These new capabilities were relatively constant across innovative providers suggesting areas for additional investment.

The majority of these interventions, summarized in Figure 8 , particularly physician house calls, telehealth, remote monitoring, and care transitions support, are intended to prevent high-cost events, including emergency department visits and hospital readmissions. Many of the providers described focus on specific clinical conditions, most often chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), and diabetes. Notably, most of the interviewees said that they were not currently reimbursed separately for providing these services. One organization said that they fund these programs as part of their mission statement. Another noted that within their health system, the cost avoidance for the system as a whole through the care coordination program far outweighed any direct costs of running the care coordination program. However, this stakeholder noted that freestanding home health agencies likely face significantly greater reimbursement concerns if costs incurred and avoided are seen only within siloes. Interviewees indicate that innovative home health agencies were able to increase their value significantly in population health management initiatives primarily because of their connections to or integration within (and support from) a larger health system or network. This trade-off represents a fundamental challenge with the current home health reimbursement system: Home health agencies incur higher costs for care coordination and other services that prevent future health care system spending, but stand-alone providers often are not recognized for driving the decreased spending for the health care system.

Capabilities of home health agencies for the future.

Source. Avalere Health, 2016. Note. HIT = Health Information Technology.

Challenges to Address in the Current Environment

There is abundant literature describing the challenges that home health providers face to provide the type and quality of care that beneficiaries, and the health care system as a whole, will demand in the future. These challenges can be loosely categorized into eight groups:

• Financing mechanisms

The standard 60-day episode payment under the home health prospective payment system (PPS) includes payment for all services and supplies, including various skilled nursing services, therapy, and medical supplies (with the exception of durable medical equipment). 26 However, in interviews with stakeholders, multiple people noted that the FFS payment system does not reimburse for services that are essential for integrating patient care, including health information technology (HIT) capabilities, telehealth, and staffing for care coordination and care transition support. Numerous home health providers also brought up the need for better communication and coordination across the spectrum, including referring hospitals, physicians, and other medical and nonmedical providers. These providers often created mechanisms to improve this communication but did so without additional Medicare reimbursement. CMS acknowledged in recent rulemaking that “effective adoption and use of health information exchange and health IT tools will be essential . . . [to] improve quality and lower costs,” yet home health agencies, like all post–acute care providers, were ineligible for Medicare EHR (Electronic Health Records) Incentive Programs to offset the significant costs of acquiring these capabilities. 27 Recently, CMS announced that home health agencies may be among the parties who can be eligible for Medicaid meaningful use incentive payments, but it is unclear as yet whether such incentives alone will be able to support investments in HIT for the future.

• 2. Regulatory constraints

Stakeholder interviews also highlighted several regulatory barriers within the structure of the home health benefit that preclude effective care coordination, provisions that prevent the necessary level of integration and coordination with other providers. Other stakeholders highlighted the Medicare requirement that the beneficiary be homebound, which does not include all beneficiaries who truly have limited capabilities to seek services outside the home. When discussing the homebound requirement, some interviewees recommended determining eligibility based on whether the beneficiary had a certain number of ADLs or chronic conditions, as well as using Hierarchical Condition Categories (HCC) scores, similar to Medicare Advantage, but there was no consensus among interviewees on the best method to establish eligibility. In the context of APMs, where there is accountability for overarching costs in a bundled payment or shared savings construct, selective waiver of the homebound requirement was often mentioned as a means to increase access to home health services for those who need it. 28

• 3. Addressing program integrity and fraud and abuse

As with any service in which demand rises significantly in a short period of time, instances of fraud and abuse have occurred in the home health space. These issues must be addressed while also allowing patients access to needed services. CMS lists on its web site a range of actions the agency is taking and has taken to support fraud and abuse detection. To prevent fraud, these include efforts around timely licensure and accreditation, transparency, and auditing. These efforts are critical to eliminating bad actors and ensuring that patients maintain access to high-quality home health services. Notwithstanding, it is imperative that such measures do not hinder patient access to quality care, and place undue burden on agencies.

• 4. Measuring performance: Quality and patient experience

To improve quality of care and address variation across home health agencies, CMS and others have pursued value-based purchasing, quality ratings, and other forms of reporting. 1 In the context of the health care system’s shift toward value, these initiatives to link payment to performance and to provide public reporting have been important changes. Over time, it will be critical to identify a parsimonious measure set that enables home health agencies to focus on core measures that matter most for performance improvement. Today, a parsimonious measure set has not yet been identified; CMS’s home health value-based purchasing model demonstration project began on January 1, 2016, with 24 different performance measures that will be used to determine whether agencies in the selected states will receive positive or negative payment updates that will begin in 2018. The IOM recently called attention to the risks inherent in using too many measures in its report on Vital Signs: Core Metrics for Health and Health Care Progress . 29 A key consideration for the future will be to identify the core measures that home health agencies should focus on as it aligns with the rest of the health care system to achieve the Triple Aim.

• 5. Workforce limitations

Studies have raised a number of concerns related to the home health workforce, particularly for registered nurses (RNs), including turnover and clinical training in skilled areas of care. 30 One study identified nursing residency programs as an opportunity to gain skills and reduce turnover, but found that the prevalence of these programs in home health and hospice providers was relatively low (only 2.2% vs. 42.9% for hospitals). 30 The IOM workshop on the future of home health raised additional concerns about the home health workforce, including availability of family caregivers, changing demographics of care workers and patients, the need to improve geriatrics training among the home health workforce, the need to address low wages and benefits, and the overall health of the U.S. economy. 1 The workshop describes the Department of Veterans Affairs’ (VA) home-based primary care as a comprehensive model, one in which care is provided by an interdisciplinary team of nurses, physicians, social workers, rehabilitation therapists, dieticians, pharmacists, and psychologists. This model is effective, but potentially expensive, and therefore the VA targets high-cost veterans for the intervention. In scaling such a program to the general Medicare population, the skills and workforce to staff such a comprehensive, interdisciplinary team would be critical. CMS’s Independence at Home demonstration is based on home-based primary care and may be one model that could be expanded more broadly to support the use of interdisciplinary teams.

• 6. Clinical capabilities related to diseases focused on by APMs

While some APMs require a focus on population health (e.g., ACOs), others would require home health agencies to develop increased clinical capabilities to address specific conditions. For example, the CJR model discussed above requires an increased focus on caring for joint replacement patients, whereas the HRRP currently focuses on heart failure, acute myocardial infarction, pneumonia, COPD, and total hip/knee replacements. 31 Home health agencies would need to develop key capabilities to not only better manage patient care across a population of patients but also handle patients with specific needs or conditions.

• 7. Operational capabilities

As discussed previously, home health agencies would need to develop new capabilities in a changing health care environment. Many of these capabilities require home health agencies to provide new services or interact with a broader range of providers. However, beyond these capabilities focused on care delivery, home health agencies would need to make operational changes to align their systems with the current environment. For example, home health agencies may need to hire or otherwise develop relationships with new staff, such as medical directors to link home health services with those offered by other providers or emergency medical technicians to provide rapid responses in the case of acute events. 1 Current staff may need to be trained to handle new responsibilities and functions, such as using information technology and developing and following patient centered-care plans. 1 Similarly, as home health providers become greater care partners and accept risk under APMs, they may need to change their financial or accounting practices to be able to accept risk-based payments and ensure accurate revenue recognition and reserves to handle bonus payments or potential losses.

• 8. Long-term care

All told, the discussion about patients’ preferences and the appropriateness of care speaks more broadly to the clinical imperative of addressing each patient’s full range of needs, which may go beyond Medicare home health benefits. These long-term care needs, which include functional capacity, care transitions, care coordination, and support for caregivers, are not strictly medical. 1 However, they have been shown to have meaningful impacts on patients’ ability to maintain their health and remain in the community. Stakeholders, including MedPAC, have expressed concern that the increase in community-referred (or “Part B”) home health episodes may be indicative of Medicare home health being used as long-term care. 32 The United States faces an unmet long-term care need due to a relatively weak and fragmented benefit system. Some home health agencies have separate lines of business that currently provide long-term care services through Medicaid and private duty and so are important to the broader long-term care discussion.

Recommendations and Conclusions

The demographic imperative of the quickly aging population, the shift from siloed to coordinated, value-based care, and the need to meet consumer preferences demand that home health agencies provide care consistent with the four pillars of characteristics and three roles laid out in this article’s framework for the future. The future of health care delivery hinges on the ability of payers and providers to leverage the spectrum of home-based care, with Medicare skilled home health as a formidable linchpin in that spectrum.

Medicare officials have already signaled their willingness to enable some flexibility in new payment models when providers have a financial stake in their performance against quality and cost targets; however, current challenges and structures do not allow home health care to be used optimally. We offer the following recommendations to enable the future of home health care:

• To develop the capabilities needed to fully integrate and coordinate with high-quality, population-driven health systems, home health care needs to be empowered as a full partner that both shares in risk and has freedom to deploy the best care to the patient populations who can undoubtedly benefit. Policy makers should consider opportunities to reduce regulatory barriers to risk sharing, creating the incentive to provide seamless, coordinated care.
• CMS should address financing and regulatory challenges in the context of APMs as means of enabling appropriate use of Medicare home health care in these contexts. Testing waiver of regulatory limits such as the homebound requirement in select cases may lead the way toward using clinically appropriate and cost-effective care. Further reforms that enable greater flexibility in the delivery of home health care in APMs should also be considered.
• Program integrity and fraud should be addressed in a targeted fashion, directed toward fraud “hot spot” areas that are identified for further investigation through aberrant claim patterns. Removing the albatross of fraud in home health care will enable greater confidence in using Medicare home health by multiple stakeholders in the future.

Consistent with this report, the home health industry must commit to pursuing a process to transform home health and home-based care to benefit patients and the U.S. health care system. Through collaboration with multiple stakeholders, including patients, caregivers, policy makers, payers, and providers and professionals across the spectrum of care, pursuit of this transformation process has the potential to improve the way health care is delivered in America.

Acknowledgments

The authors acknowledge Jennifer Schiller for assisting in preparation of this manuscript.

Authors’ Note: A version of this article was presented at the National Leadership Forum on “The Future of Home-Based Care” on June 21, 2016, in Cincinnati, Ohio, and at a briefing sponsored by the Alliance for Home Health Quality and Innovation on June 30, 2016, in Washington, D.C.

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors gratefully acknowledge the support of the following organizations that provided funding for the Future of Home Health project: Axxess, CHAP (Community Health Accreditation Partner), UnityPoint at Home, Corridor, and Simione Healthcare Consultants.