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Wysocki A, Butler M, Kane RL, et al. Long-Term Care for Older Adults: Future Research Needs: Identification of Future Research Needs From Comparative Effectiveness Review No. 81 [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2013 Jul. (Future Research Needs Papers, No. 44.)

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Long-Term Care for Older Adults: Future Research Needs: Identification of Future Research Needs From Comparative Effectiveness Review No. 81 [Internet].

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This future research needs (FRN) report is a followup to the 2012 comparative effectiveness review (CER) “Long-Term Care for Older Adults: A Review of Home and Community-Based Services Versus Institutional Care.” The CER was conducted by the Minnesota Evidence-based Practice Center (EPC) to compare long-term care (LTC) for older adults delivered through home and community-based services (HCBS) with care provided in nursing homes (NHs) by evaluating (1) the characteristics of older adults served through HCBS and in NHs, (2) the impact of HCBS and NH care on outcome trajectories of older adults, and (3) the per-person costs of HCBS and NH care as well as costs for other services such as acute care and family burden. The review was intended to support policy and research decisionmaking. FRN projects identify gaps in the current research that limit the conclusions in CERs and inform researchers and research funders about these gaps. They aim to encourage research likely to fill the gaps and make the body of evidence more useful to decisionmakers.

Long-Term Care for Older Adults

LTC refers to a broad range of services designed to provide assistance over prolonged periods to compensate for loss of function due to chronic illness or physical or mental disability.1 LTC includes hands-on, direct care as well as general supervisory assistance. The type, frequency, and intensity of services vary; some people need assistance for a few hours each week, whereas others need full-time support. LTC differs from acute or episodic medical interventions because it is integrated into an individual's daily life over an extended time.2

HCBS refers to services provided in an array of noninstitutional settings. These include recipients' homes; community-based group-living arrangements such as congregate housing, adult foster care, and residential care and assisted living (AL) facilities (the last two terms are sometimes used interchangeably, but we refer to AL exclusively); and community settings such as adult day care and adult day health. Services provided via HCBS include care coordination or case management, personal care assistant service, personal attendant service, homemaker and personal care agency services, home hospice, home delivered meals, home reconfiguration or renovation, medication management, skilled nursing, escort services, telephone reassurance services, emergency help lines, equipment rental and exchange, and transportation. Care through HCBS also includes educational and supportive group services for consumers or their families. Some aspects of HCBS are construed as respite care meant to relieve family caregivers. For the review, AL was examined as a separate subset of HCBS because it encompasses aspects of both community-based and institutional care.

NHs are state-licensed institutional facilities offering 24-hour room and board, supervision, and nursing care. NH services may include personal care, support for activities of daily living, medical management, nursing management, medication management, restorative nursing, palliative care, physical rehabilitation (either as a short-term service associated with postacute care or as maintenance rehabilitation), social activities, and transportation.

The CER addressed the following two Key Questions targeting direct comparisons of LTC provided through HCBS and in NHs to older adults aged 60 and older:

Key Question 1: What are the benefits and harms of LTC provided through HCBS compared with institutions such as NHs for older adults, aged 60 and older, who need LTC?

  1. To what extent do HCBS and NHs serve similar populations?
  2. How do the outcomes of the services differ when tested on similar populations?
  3. What are the harms to older adults as a result of HCBS and NHs? (Reported harms include accidents, injuries, inadequate preventive care, unnecessary hospitalizations, and concerns about abuse or neglect.)

Key Question 2: What are the costs (at the societal and personal levels) of HCBS and NHs (per recipient and in the aggregate) for adults age 60 and older? Costs may include direct costs of care as well as resource use and family burden.

  • Direct costs of care refer to public program and individual spending on LTC services for HCBS recipients and NH residents.
  • Resource use includes program and individual spending on acute care services such as physician and hospital care as well as spending by other subsidy or transfer programs.
  • Family burden includes the opportunity costs of care.

The population included in the CER were older adults (age ≥60) receiving LTC either through HCBS or in NHs. The age ceiling was adjusted for the Program of All-Inclusive Care for the Elderly (PACE), which begins eligibility at age 55. Figure 1 displays the analytic framework for the CER.

Figure 1 depicts how long-term care (LTC) delivered through home and community-based services (HCBS) compared with care provided in nursing homes (NHs) may contribute to health outcomes in the target population (older adults age ≥60 years). Patient characteristics of interest that may modify outcomes include: age; race/ethnicity; sex; functional status; clinical status; cognition; rural/urban; morbidities; mental illness; socioeconomic status; payer; prior service use; disability history. LTC of older persons delivered through HCBS compared with NHs (KQ1a and KQ1b) may affect the following outcomes: physical function; social function; cognition; pain; death or place of death; mental health outcomes (e.g., depression, anxiety); satisfaction; quality-of-life outcomes (including health related quality-of-life); frequency of use of acute care services (e.g., hospitalizations and ER visits and subsequent LTC); outcomes related to family caregivers (e.g., strain on family caregivers, health effects). Harms from LTC delivered through HCBS compared with NHs (KQ1c) include accidents, injuries, inadequate preventive care, unnecessary hospitalizations, and abuse or neglect. Costs for LTC delivered through HCBS compared with NHs (KQ2) include costs to programs (e.g., Medicaid and Medicare) and to individuals. Cost to programs include spending on LTC services, as well as spending on acute care services, housing subsidies, food stamps, and other transfer programs. Costs to individuals include out-of-pocket spending on LTC and acute care services (including insurance premiums, deductibles and co-pays) and costs of family burden.

Figure 1

Analytic framework corresponding to the Key Questions. KQ = Key Question; LTC = long-term care

Patient characteristics that could modify outcomes included age, race/ethnicity, sex, socioeconomic status, functional status, clinical status, cognition, rural/urban, morbidities, mental illness, payer, prior service use, and disability history. Studies focusing on postacute care, such as Medicare home health services, were not included. Postacute care is care provided to individuals discharged from a hospital; it aids in their recuperation and rehabilitation and typically lasts less than 30 days.

Resident outcomes and costs were examined separately. Data from cross-sectional studies were used to compare the characteristics of HCBS recipients and NH residents, and data from longitudinal studies were used to assess change in outcomes over time between HCBS recipients and NH residents. Cross-sectional studies compare outcomes across settings at a specific point in time; whereas longitudinal studies compare changes in outcomes over a defined time period from 6 months to 5 years.

Outcomes of interest included physical function, mental health outcomes (e.g., depression and anxiety), quality of life, social function, satisfaction, outcomes related to family caregivers, death, place of death, use of acute care services (e.g., hospitals, emergency departments), and harms such as accidents, injuries, pain, abuse, and neglect.

For the examination of costs, all relevant costs to programs such as Medicaid and other public programs and costs to individuals and their families were considered. These costs included spending on LTC services, acute care services, and transfer programs, and opportunity costs to family caregivers.

The review included studies published in English from 1995 to March 2012. Published and grey literature from the United States and published literature from economically developed countries with well-established health and LTC systems were examined.

Findings of the CER

Results from relevant observational studies were qualitatively synthesized; no relevant randomized controlled trials (RCTs) were identified. The authors found that on average, NH residents had more limitations in physical and cognitive function than both HCBS recipients and AL residents, but mental health and clinical status were mixed. The studies that compared the outcome trajectories of HCBS recipients or AL residents with NH residents over time had high risk of bias, resulting in low or insufficient evidence for all outcomes examined. In comparing AL with NH, low-strength evidence suggested no differences in outcomes for physical function, cognition, mental health, and mortality. In comparing HCBS with NHs, low-strength evidence suggested that HCBS recipients experienced higher rates of some harms while NH residents experienced higher rates of other harms. Evidence was insufficient for other outcome domains and comparisons. Evidence was also insufficient for cost comparisons.

Overall, it was concluded that determining whether and how the delivery of LTC through HCBS versus NHs affects outcome trajectories of older adults is difficult due to scant evidence and the methodological limitations of studies reviewed. The authors concluded that more and better research is needed to draw robust conclusions about how the setting of care delivery influences outcomes and costs of LTC for older adults.

Evidence Gaps

Because evidence was low-strength or insufficient for all outcomes examined, the CER included recommendations to improve future research on LTC for older adults. We refined and developed a list of evidence gaps from the CER. This preliminary set of research gaps (below) are separated into two categories: (1) methodological research gaps that need to be addressed to enhance the usefulness of current research, and (2) topical research gaps that have not been sufficiently addressed within the current literature.

Methodological Research Gaps

Reporting Issues

Recommendations from CER
  • Need detailed descriptions of the settings and services, including the nature and extent of services, for the intervention and comparison groups.
  • Need to characterize the composition of persons served through HCBS and in NHs using standardized measures and systematic data collection.

Measurement Issues

Recommendations from CER
  • Need to use standardized outcome measures for both HCBS and NH recipients that are capable of showing meaningful change.
    • Measure outcomes at appropriate and comparable intervals of time.
    • Utilize measurements that fully measure benefits and harms, including psychological and social benefits and harms.
    • Use standardized measures of quality-of-life and social function that are applicable to both HCBS and NH settings.
  • Need to make cost comparisons that account for LTC costs and all other relevant costs, including the cost of room and board, costs of public subsidies (rent, transportation, and food stamps), cost of informal care provided by family members, and costs for other public programs such as Medicare.

Design Issues

Recommendations from CER
  • Need to take floor and ceiling effects into consideration when examining declines in function and cognition.
  • Need to make efforts to adjust for selection bias.
    • Methods include propensity score analysis, instrumental variables analysis, “frontier analysis,” multivariate analysis.
    • Include measures of social support and attitudes.
  • Need to deal with attrition, particularly attrition due to death.
    • Modeling death as worst functional case or using two-stage models.
  • Need to account for persons moving from one type of care to another.

Topical Research Gaps

Recommendations from CER

  • Need longitudinal studies that examine change in status over time.
    • Use admission cohorts and follow recipients through various stages of LTC service use.
  • Need more generalizable samples.
  • Need to focus on differences within subgroups, defined by diagnosis, functional capacity, socioeconomic indicators, and access to care.
  • Need to define and weight outcomes.
    • Determining what type of care is best requires weighting the multiple possible outcomes, in which the outcomes are multidimensional.
  • Need more studies that focus on non-Medicaid populations, specifically private pay clients.


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