Examining Satisfaction and Quality in Home- and Community-Based Service Programs in the United States: A Scoping Review

Abstract

Background and Objectives

Long-term services and supports in the United States are increasingly reliant on home- and community-based services (HCBS). Yet, little is known about the quality of HCBS. We conducted a scoping review of the peer-reviewed literature to summarize HCBS consumer, provider, and stakeholder satisfaction with services as a means of assessing quality.

Research Design and Methods

We searched PubMed, OVID-MEDLINE, and SCOPUS to identify articles published from 2000 to 2021 that reported on studies describing a U.S.-based study population. Articles were grouped into 3 categories: drivers of positive consumer satisfaction, drivers of negative consumer satisfaction, and provider and stakeholder perspectives on satisfaction.

Results

Our final sample included 27 articles. Positive perceptions of quality and reported satisfaction with services were driven by consistent, reliable, and respectful care providers, and adoption of person-centered models of service delivery. Mistreatment of consumers, staff turnover, training, service interruptions, and unmet functional needs were drivers of negative consumer perceptions of quality. Support for caregivers and emphasis on training were identified by providers and stakeholders as important for providing satisfactory services.

Discussion and Implications

Multiple data challenges limit the ability to systematically evaluate HCBS program quality; however, studies examining single programs found that HCBS consumers are more satisfied and associate higher quality with easy-to-navigate programs and professional staff. Efforts to expand HCBS should also include requirements to systematically evaluate quality outcomes.

Background and Objectives

Long-term services and supports (LTSS) in the United States are increasingly reliant on home- and community-based services (HCBS) and noninstitutional models of care. Johnson and Dey (2022) project that over 50% of U.S. adults turning 65 years old today will develop a functional impairment requiring LTSS for less than 3 years, and about 20% of adults will experience this condition for more than 5 years. Medicaid is the largest payer of LTSS, and since 2016, 57% of Medicaid LTSS expenditures have been for HCBS (Gorges et al., 2019; Grabowski, 2021; Musumeci, 2021). The shift in LTSS from the nursing home to community, referred to as the rebalancing of long-term care, is part of national and state policy initiatives to redistribute costs associated with long-term care, and to align the provision of LTSS with person-centered preferences (Gorges et al., 2019; Lockhart et al., 2008). These preferences include the desire to remain in one’s home and community for as long as possible, often described as aging in place (Eckert et al., 2004; Forsyth & Molinsky, 2021; Herbert & Molinsky, 2019). This shift toward community-focused care was doubly supported by the Supreme Court’s Olmstead (1999) decision, which set precedent for states to prioritize the community integration of older adults (Lockhart et al., 2008). Nationally, executive, and legislative prioritization of community-based supports is growing, in part driven by the ongoing coronavirus pandemic, and in the Build Back Better Act (H.R.5376), proposed legislation which includes investment in HCBS expansion and direct workforce enhancement (Musumeci, 2021; Werner & Konetzka, 2018).

Medicaid program implementation is largely left to the states. Therefore, there is substantial heterogeneity between states in both the design of and investment in HCBS programs. State Medicaid programs must pay for nursing home care, HCBS state plan service (i.e., personal care services), and home care. States can implement HCBS waivers (e.g., 1915(c) or 1115), which allow them to create service programs for specific Medicaid-eligible populations (e.g., older adults, 65+) or conditions (e.g., traumatic brain injury; Musumeci, 2021; Reaves & Musumeci, 2015; Wysocki et al., 2015). Programs provided under a waiver also pay for Medicaid services that traditionally are only reimbursed in an institutional setting (e.g., skilled nursing services) to be provided in the community/home. Waiver programs can cap enrollment and there is no limit on the number of waiver programs a state can offer (Bennett et al., 2018; Home- and Community-Based Services | CMS, n.d.). Although Medicaid is the largest payer of LTSS, there are other public programs that pay for HCBS. The Older Americans Act (OAA) of 1965 and Title III Grants for State and Community Programs on Aging support community living for older adults through nutrition services, respite, and home-based services (Gordon, 2019; Thomas & Mor, 2013). OAA and Title III-funded services make HCBS available for older adults who may not yet be Medicaid-eligible.

The shift toward community-based care has been accompanied by efforts to adequately evaluate program quality from a consumer’s perspective, often measured via consumer satisfaction with services. In a 2016 report, the National Quality Forum (NQF) noted the lack of standardized measurement of quality in HCBS and limited public reporting of program quality (NQF: Quality in Home and Community-Based Services to Support Community Living: Addressing Gaps in Performance Measurement, 2016). Furthermore, the NQF report described existing measures as focusing on narrow domains, lacking comparability across states and delivery systems, and not adequately capturing consumer experience and need (NQF: Quality in Home and Community-Based Services to Support Community Living: Addressing Gaps in Performance Measurement, 2016). NQF noted existing surveys used by states to evaluate consumer perspectives, including the Consumer Assessment of Healthcare Providers and Systems Home and Community-Based Services Survey (HCBS CAHPS; CAHPS Home and Community Based Services Survey | Medicaid, n.d.), National Core Indicators (NCI) and National Core Indicators-Aging and Disabilities (NCI-AD; Reports | NCI-AD (National Core Indicators-Aging and Disabilities), n.d.). These measures contain some consumer-focused domains, yet no one survey addressed every NQF domain or subdomain. The NQF recommended standardizing HCBS quality domains related to service delivery and effectiveness, person-centered planning and coordination, choice and control, community inclusion, caregiver support, workforce, human and legal rights, equity, holistic health and functioning, system performance and accountability, and consumer leadership in system development (NQF: Quality in Home and Community-Based Services to Support Community Living: Addressing Gaps in Performance Measurement, 2016).

Given the need to evaluate HCBS quality, we conducted a scoping review to map literature assessing satisfaction with services as reported by clients/consumers, family caregivers, providers (paid caregivers, care managers/coordinators), and/or stakeholders (e.g., state officials, waiver service agencies) as means of understanding quality. We also linked the measures of satisfaction reported in the literature to NQF quality domains of service delivery and effectiveness, person-centeredness in planning and coordination, choice and control, caregiver support, workforce, equity, holistic health and functioning, and community inclusion.

Research Design and Methods

Review Framework

We conducted our scoping review following the guidelines of Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and guidance for conducting systematic scoping reviews developed at the Joanna Briggs Institute (Peters et al., 2015; PRISMA checklist available as Supplementary Material Section 3). Additionally, we referenced The Gerontologist “Methodological Guidance for a Quality Review Article” (Heyn et al., 2019) to position our scoping review across the varying methods for systematically synthesizing evidence. In conducting the review, we proceeded based on the following steps: (1) establish a study team and problem formulation, purpose of the study, and identification of the question, (2) define keywords and search strategy process, (3) establish inclusion criteria and perform database search, (4) download and manage citations with a bibliographic software, (5) apply inclusion and exclusion criteria, and cite reasons for exclusions, (6) study selection and evaluation of the literature, (7) data extraction, critical appraisal, and analysis, (8) interpretation of findings, and (9) presentation of results (Heyn et al., 2019). For the purpose of this review, we defined “consumer” as interchangeable with “client,” meaning a person receiving services through an HCBS program, with or without the involvement of a family/friend caregiver.

Identifying Problem, Purpose, and Research Question

Our review is guided by a conceptual and operational definition of HCBS that aligns with the Centers for Medicare and Medicaid Services’ definition “person-centered care delivered in the home and community” and includes health (e.g., personal care, home health care) and human services (e.g., congregate or home-delivered meals; Home- and Community-Based Services | CMS, n.d.). Within HCBS, we aimed to examine and map the peer-reviewed literature describing quality as reported by client/consumer, family caregiver, provider, or stakeholders’ satisfaction with services (quality domain concept) over a 20-year period (2000 to January 2021) for U.S. adults (population). Providers and stakeholders were defined to broadly encompass individuals providing care to a consumer/client and who are paid through HCBS programs, or external to the direct care process such as case managers, state program officials, or agency personnel. Consumer satisfaction provides a valuable perspective on quality of care, life, and services, and represents an important element of measuring program quality (Harris-Kojetin & Stone, 2007). The relevance of this information extends to caregivers (Harris-Kojetin & Stone, 2007). We also sought to describe the data sources, state and waiver program examined, methodologies, and thematic trends of results and conclusions (outcomes of interest).

Search Strategy

We searched PubMed, OVID-Medline, and Scopus to identify studies describing consumer-centered measures of satisfaction with HCBS. Key terms were developed and refined as a collaborative effort among the larger funded project team. Databases were selected in consultation with an academic librarian. One author executed the OVID-Medline and PubMed database searches in January 2021 using key terms and Boolean operators (see Supplementary Material Section 1). To better cover interdisciplinary publications, an additional search in Scopus was completed in September 2022. All articles were imported into Endnote reference management software.

Study Selection Criteria

Our search was limited to journal articles published between January 2000 and the time of database search in January 2021 (see Figure 1). Inclusion criteria were as follows: (1) articles describing Medicaid-funded HCBS and consumer-centered measures of quality and/or satisfaction, (2) adults (18 years and older) given the considerable variation in targeting allowed under most state waivers and community-based programs, (3) articles available in English, and (4) studies describing a U.S.-based study population. We defined consumer-centered measures as responses obtained from consumers via survey or other modes of engagement. Caregiver, stakeholder, and/or provider measures were based on surveys or direct engagement regarding their perceptions of the recipient of HCBS.

Figure 1.

Adapted PRISMA diagram. *Nursing home-specific without focus on waiver programs, hospital utilization, community-dwelling without waiver services, pharmaceutical treatments without community-based targeting, survey of primary care workforce, policy discussions of Medicaid at large, workforce training, caregiver-specific without mention of consumer, Medicaid financing/reimbursement, pregnant women receiving community support, nutrition-focused articles, advance directives, private pay services, falls, novel trials, immunization, passive remote monitoring, dental health care, published before 2000, child/adolescent, gray literature, international, full-text unavailable. HCBS = home- and community-based services, PACE = Program of All-Inclusive Care for the Elderly, HIV/AIDS = human immunodeficiency virus/acquired immunodeficiency syndrome, TBI = traumatic brain injury, ID/DD = intellectual disability/developmental disability.

Exclusion Criteria

We excluded articles during title and abstract review if they fell into the following categories: (1) gray literature (e.g., white papers, policy reports, government reports), (2) articles for which the full text was unavailable, and (3) articles that did not focus on consumer, provider, or stakeholder satisfaction or quality, which included articles describing the following topics related to HCBS: single-state characteristics and service trends, state variation (multistate comparison and/or national comparison) in HCBS program design without mention of quality, integrated care for dual eligible adults, pharmaceutical interventions in waiver program participants, policy-focused articles, HIV/AIDS waiver programs, traumatic brain injury waiver programs, and intellectual disability/developmental disability waiver programs (see Figure 1). Given the considerable heterogeneity in state-level efforts surrounding Medicaid-funded programs, we chose to focus on literature that highlights consumer satisfaction in a manner that might be more generalizable or readily accessible to researchers and states alike; thus, we concluded that gray literature was beyond the scope of this manuscript. Lastly, we excluded articles on the following topics: nursing home populations without explicit focus on waiver recipients, acute care service use, community-dwelling older adults not using HCBS, pharmaceutical treatments, surveys of the primary care workforce, general discussions of Medicaid policy including financing and reimbursement, workforce training, pregnant women receiving community services, private pay services, novel trials, immunization, dental care, and miscellaneous topics (e.g., nutrition-focused without waivered services, advance directives, falls, and passive remote monitoring). A complete list of excluded articles (N = 531) is available in Supplementary Material Section 4.

Data Extraction and Conceptual Categories

Data extraction was performed using a form created through REDCap, a secure web application designed to support data capture for research (see Author Note 1). The data capture form was adapted from Peters et al. (2015). One graduate research assistant abstracted information on the study objectives, design, waiver program name and state, study setting, quality and/or satisfaction domains, and key findings. A second doctoral-level researcher independently performed data abstraction on a random sample of eight (29.6%) articles to assess for discordance between reviewers (Li et al., 2022). After data abstraction was completed—including for the second independent reviewer—all data capture forms were exported to Excel, and two additional reviewers, separate from those who first completed the data capture forms, reconciled any discrepancies between the two reviewers by performing a secondary review of all articles included in the analysis. This was done in place of calculating rates of interrater agreement.

Studies were evaluated separately based on whether the population included HCBS consumers, providers (paid caregivers and care managers/coordinators), or the study solicited feedback from stakeholders (e.g., waiver and/or program providers, program managers, and policymakers). Two graduate research assistants met biweekly from June to September 2021 to discuss the final sample of articles and to reach agreement on overarching thematic categories, as well as article placement within these categories. Any conflicts were reconciled by paired review of the research article in question. We reviewed all articles in the final sample and grouped them into three conceptual categories (1) drivers of positive consumer satisfaction, (2) drivers of negative consumer satisfaction, and (3) perspectives of providers and stakeholders on consumer satisfaction.

Within the three categories and based on the article discussion of satisfaction in relation to service quality, we mapped studies to NQF domains and subdomains that were reflective of article conclusions (NQF, 2016, p. 11). The NQF 2016 report consists of 11 domains and 40 subdomains of measurement (see Supplementary Material Section 2; NQF, 2016). The identified conceptual categories and domains and subdomains are not mutually exclusive, that is, one paper can be listed under multiple categories, domains, and subdomains based on findings.

Results

Of the 950 articles for which title and abstract screening was performed, 27 articles met our inclusion criteria (see Figure 1). Studies on HCBS quality and satisfaction in the United States published in the last 21 years were most concentrated in the mid-2000s, with the modal publication year being 2006 (5) (see Figure 2). Twenty-six percent (7) of included articles were published in 2019 or later.

Figure 2.

Number of studies identified as primarily addressing quality and satisfaction by publication year. Last date is January 2021.

Sixteen (59%) articles focused on satisfaction in relation to service quality in a single U.S. state, whereas the remaining 11 studies (41%) examined multiple states. Single-state studies were conducted in Arkansas (n = 2), Connecticut (n = 4), Iowa (n = 1), Kansas (n = 1), Michigan (n = 1), Minnesota (n = 1), Texas (n = 1), Virginia (n = 3), Washington State (n = 1), and a deidentified state (n = 1). Among the multistate articles, one compared two states, three examined three states ± the District of Columbia, two examined six states, one examined 10 states, and four did not list the number of states included. The most common research designs were survey data analysis (10, 37%) and qualitative interviews/focus groups or qualitative analysis of secondary data (12, 44%) followed by administrative data analysis (2, 7%), mixed methods (2, 7%), and randomized control trial (1, 4%). The majority of articles reviewed examined both older and younger adult consumers of HCBS.

All but four of the articles exclusively examined populations enrolled in Medicaid HCBS waivers or Medicaid-funded programs, such as personal assistance services (PAS). The exceptions were Stewart et al. (2006), which included both HCBS and institutional Medicaid long-term care, Shugarman et al. (2002), which included Medicaid HCBS and Michigan Care Management (an HCBS program that did not require Medicaid eligibility), Herrera et al. (2013), which examined people enrolled in OAA Title III caregiver services, and Kusmaul et al. (2020), which included semistructured interviews with direct care workers providing care in the home and/or community.

Roughly half of the final sample of articles (n = 13, 48%) assessed the impact of a pilot program or a change in benefit structure. This included Cash and Counseling, Money Follows the Person, or other consumer-directed care programs, the impact of implementing Medicaid-managed care, and evaluation of programs aimed at assisting informal caregivers. The Medicaid Cash and Counseling demonstration and replication project allowed consumers to direct their PAS, including hiring family members. The Money Follows the Person demonstration supports states in rebalancing their LTSS programs away from institutional care and toward community-based services.

Conceptual Categorization of Articles

Article characteristics are detailed in Table 1, and Table 2 outlines the grouping of articles by conceptual category and organization by NFQ domain and topic area (i.e., NQF subdomain). The NQF 2016 report consists of 11 domains and 40 subdomains of measurement, but we were only able to map studies to seven domains: (1) service delivery and effectiveness, (2) person-centeredness in planning and coordination, (3) choice and control, (4) caregiver support, (5) workforce, (6) community inclusion, and (7) equity. A complete list of NQF quality domains and subdomains is included in Supplementary Material Section 2.

Table 1.

Study Characteristics of 27 Articles Included in Review

Study	Study period	Study design	Sample	Outcomes of interest	Description
Shugarman et al. (2002)	November 1996 to October 1997	Secondary analysis of Minimum Data Set for Home Care in Michigan. Assessments were collected longitudinally, and the baseline (initial admission assessment) and 90-day follow-up assessments were used.	N = 527 randomly selected HCBS recipients	Hospitalization post-HCBS enrollment.	Study of a cohort of randomly selected adults in Michigan receiving HCBS services in 1996–1997 to evaluate caregiver attitudes and participant characteristics, as well as risk of hospitalization. The data were pulled from the Minimum Data Set for Home Care, specifically the baseline and 90-day follow-up assessments.
Foster et al. (2003)	Baseline: 1998–2001; follow-up: 1999–2002	Baseline enrollee survey and follow-up survey 9 months after random assignment to IndependentChoices (consumer-directed personal care service demonstration)	n = 2,008 baseline enrollee survey n = 1,739 follow-up survey	Consumer satisfaction with overall care arrangements and paid caregivers, unmet needs, quality of life (QoL), adverse health events, general health, and self-care.	This article reports on the national C&C Demonstration in Arkansas. Survey participants were younger and older adult consumers; if needed, surveys were completed with a proxy respondent due to cognitive and physical impairments.
Feinberg and Newman (2004)	March to July 2002	Case study, interviews with state officials and stakeholders from 10 states (Alabama, California, Florida, Hawaii, Indiana, Iowa, Maine, Pennsylvania, Texas, and Washington)	N = 140 state officials and stakeholders	Are family/informal caregivers viewed as a central component of the system, are they perceived to be consumers; state approaches to designing caregiver-support systems; how are programs administered/funded; approaches to using caregiver assessments to address needs/situations of family caregivers; are family caregivers permitted to have consumer-directed options, is support integrated into other programs, is support implemented in the context of the Olmstead decision.	Explore the experience of 10 states in providing supportive services to family/informal caregivers for older adults and adults with disabilities. Explicit focus is given to the National Family Caregiver Support Program, state general funds, Medicaid waiver programs, and other state-funding streams. Examine policy issues related to caregiver-support services within HCBS.
Glass et al. (2005)	N/A	Qualitative interviews with clients and caregivers, primary data collection	N = 25 (18 clients, seven family caregivers)	Client definition of “quality personal care services”; unmet need.	To examine the quality of HCBS provided through the Virginia Elderly & Disabled Medicaid waiver program via “exploratory” interviews. Interview questions included how long the client had been receiving services, unmet needs, past and present experiences with aides. Client definition of their most important outcome and quality services.
Brossoie et al. (2005)	2002	Exploratory survey of Elderly & Disabled waiver agency personnel in Virginia	N = 65 waiver providers	Agency quality assurance (QA) strategies to recognize issues and concerns; provider perceptions of problems, how they identified them, and how they were resolved.	Examination of QA strategies employed by local agencies providing Elderly & Disabled waiver services (personal care, adult day services, respite care) in Virginia. Adapts Kane et al. (1997) quality assessment scenarios to identify QA strategies used by Virginia providers. Part of a larger project under the federal Real Choice Systems Change Grant Initiative.
Khatutsky et al. (2006)	2003–2004	Survey of HCBS beneficiaries (participation of client or client via proxy [paid/unpaid caregivers])	N = 2,325 HCBS beneficiaries in six states (Alabama, Kentucky, Maryland, Michigan. Washington, and Wisconsin; analytic sample)	Satisfaction with Medicaid-paid personal assistance	The sample was allocated based on the number of HCBS beneficiaries in each state, and the sample frame included both older persons and younger people with physical disabilities. Satisfaction with personal care services was used to construct an eight-item scale rating various aspects of paid assistance and estimated satisfaction.
Mahoney et al. (2006)	N/A	Review article	N/A	Summarize the impact of the initial C&C demonstration on consumer satisfaction, unmet needs, and health outcomes; discuss the impact of the 2004 expansion to 12 states.	Discussion of the demonstration and evaluation of the C&C program and three state preliminary findings. Original C&C demonstration was a controlled experiment with random assignment, ethnographic study, and process evaluation.
Anderson et el. (2006)	Survey period: May 2003 to June 2004	Survey of Medicaid HCBS beneficiaries in six states	N = 2,597 community-residing Medicaid beneficiaries in six states (Alabama, Kentucky, Maryland, Michigan, Washington, and Wisconsin)	Effects of workforce recruitment/retention on consumer personal satisfaction; effects of worker training, treatment, and respect on a single consumer satisfaction measure.	This study was intended to assess the impact of workforce issues on consumer satisfaction with Medicaid personal assistance services (PAS). The study population included younger and older adults (stratified by age over and under 65 years) with disabilities.
Stewart et al. (2006)	N/A	Focus groups and key informant interviews with service providers, consumers, and decision makers of long-term care services in Arkansas for older adults, adults with physical disabilities, and adults with developmental disabilities	Four focus groups (N = 31 participants) Key informant interviews (N = 59)	Why do service recipients use any given service they are receiving; what efforts or interventions are needed to help consumers/decision makers access desired services?	Intended to describe factors that influence decisions to use Medicaid-supported long-term care services in Arkansas for older adults (65+), adults with physical disabilities (21–64), and adults with developmental disabilities (18+). Decision-making process conceptualized through an adapted version of Aday and Andersen’s Phase 2 Model of Health Services Use (1995).
Kim et al. (2006)	Survey period: February to April 1998	Kansas HCBS Physical Disability Waiver: Consumer Satisfaction Survey	N = 705 PAS beneficiaries	Overall Satisfaction with PAS, satisfaction with number of allowed PAS hours/week, and whether the needs of the individual consumer were met.	Comparison of cost and use of health services and satisfaction with services between people receiving consumer-directed vs agency-directed PAS through the Medicaid HCBS Physical Disabilities waiver program.
Schore et al. (2007)	Survey period: November 1999 to July 2002	Consumer telephone surveys, program records/Medicaid data, site visits, and mail-based survey of counselors.	N = 3,509	For Medicaid beneficiaries who volunteered to participate in the C&C demonstration program, it examines consumer experiences with enrollment and program features.	This study explored consumer satisfaction with C&C services and interactions with counseling staff. The majority of consumers used counseling services, and >80% found this assistance useful, especially bookkeeping and fiscal intermediary services. About 85%–98% of consumers would recommend similar services for those who are “seeking more control over their care.” Additionally, the majority said it “improved their lives” by giving them the agency to choose their own care providers.
Wiener et al. (2007)	Survey period: September 2003 to June 2004	Survey of Washington Medicaid beneficiaries receiving HCBS and administrative data from WA Department of Social and Health Services	N = 513 Medicaid HCBS beneficiaries	Overall satisfaction as measured by the Satisfaction with Paid Personal Assistance Scale. Interpersonal aspects of care.	Analysis of the effect of consumer-directed vs agency-directed home care on satisfaction with paid PAS among WA Medicaid HCBS enrollees. Satisfaction with PAS measured using an eight-item scale.
Glass et al. (2008)	Survey period: July to September 2003	Primary data collection, statewide telephone survey	N = 819 Medicaid waiver beneficiaries	Beneficiary perceptions of performance, satisfaction, and QoL outcome data.	Study intended to document clients’ or proxies’ perspectives on how home-based personal care services, Elderly & Disabled waiver services are provided in Virginia.
Mullan et al. (2009)	April to July 2004	Focus groups including recipients of PAS recruited by Centers for Independent Living	N = 67	Focus group discussion held with racially/ethnically diverse and low-income users of PAS.	Racially and ethnically diverse (Black, Chinese American, Biracial, and Hispanic/Latino adults), low-income consumers of PAS participated in focus groups about their satisfaction/opinion on current services. Emphasis is on perception and satisfaction with current care and suggestions for improvement.
Robison et al. (2012)	January 2008 to July 2009	Review of retrospective administrative data, care manager notes, and focus groups with care managers	n = 3,505 clients for administrative data n = 224 files for care manager notes n = 24 care managers for focus groups	Program service gaps contributing to HCBS to NF transitions, including acute health problems, mental health, and family caregivers.	Identify unmet needs of older adult HCBS consumers who transition to NF care. The Connecticut Home Care Program for Elders (CHCPE) serves as the research setting.
Herrera et al. (2013)	2007 and 2008	Secondary analysis of the Fifth National Survey of Older Americans Act (OAA) Participants—telephone interviews with caregivers.	N = 1,749 participants (96 Hispanic, 240 African American, and 1,406 White caregivers) and the relatives for which care was provided	Volume of caregiver and other support services used; unmet hours of respite care; independent living. Sociodemographic characteristics of caregivers. Care recipients ADLs/IADLs.	Variation in the use of OAA caregiver services by a group of “multiethnic caregivers” (Hispanic, African American, and White). Using the Health Retirement Survey and Hispanic Established Populations for Epidemiologic Studies of the Elderly, assess whether or not OAA caregiver services are accessible to the most vulnerable older adults.
Harry et al. (2016)	N/A	Participatory action research & qualitative content analysis of adults enrolled in one state’s C&C-based program	N = 17	Participant experience directing their own services and supports over time; experience of engaging with/contributing to society	To enhance knowledge on how participant-directed options support community interaction and integration for long-term participants in these programs. Study sample included all Medicaid-eligible adults 36+ years, currently enrolled in one state’s C&C program, who have been enrolled for at least 5 years.
Kristof et al. (2017)	September to November 2013.	QoL interviews with all Connecticut MFP participants pre- and post-transition (6, 12, 24 months). Participants gave permission to have family members/close friends interviewed.	N = 156	Family and informal caregivers of older adults and their experiences after transition from nursing home (NH) to the community via Connecticut’s MFP program. Special emphasis on caregivers’ satisfaction with formal support services and unmet needs.	The purpose of this study was to identify caregiver burden as well as positive aspects of caregiving, depressive symptoms, anxiety, and stress among family and informal caregivers caring for older adult participants in the MFP program. Caregiver’s also detailed satisfaction and unmet needs. Caregivers largely desired more training opportunities and opportunities for collaboration with paid caregivers.
Abbott et al. (2018)	N/A	Visiting Nurse Service of New York client database; the Preferences for Everyday Living Inventory - Home Care (PELI-HC) scale measures psychosocial preferences through a 55-item set of ranked, 5-point Likert scale questions.	PELI-HC (NY): N = 528 PELI-NH (PA): N = 255	Identify 10 most highly ranked and shared preferences that are important to most consumers of long-term services and supports (LTSS). Forty-one items were asked of both the nursing home (PELI-NH) and HCBS (PELI-HC) samples and allowed for cross-comparison.	Comparison of the ranked psychosocial preferences of both nursing home and HCBS recipients to identify shared preferences and common needs and goals of individuals receiving services across the LTSS continuum. The identification of preferences common to LTSS service recipients is relevant for quality improvement and satisfaction with services in the realms of caregiver/workforce, person-centeredness, and choice and control.
Grossman (2019)	2014–2016	Semistructured interviews with 18 Medicaid personal care attendant service (PCA) users/clients	N = 18 Medicaid PCA beneficiaries	Structural level influences on individual, cross-state moves.	Structural and institutional factors explored using the Moves in Context framework, meant to highlight the experiences of Medicaid PCA consumers with physical disabilities. The move trajectory is described in four parts, including: impetus for moving, ability to move, success of move, and influence of move story. The ability of PCA users to move across states, despite variation in Medicaid policy, is considered an act of self-determination. All study participants were under age 65 at the time of interview.
Mahoney et al. (2019)	Arkansas: March 2000 to June 2000 New Jersey: July 2001 to August 2001 Florida: July 2002 to August 2002	Secondary analysis (instrumental/multiple-case study method) of data originally collected as part of a qualitative study of the Arkansas, Florida, and New Jersey C&C Demonstration Programs.	N = 76 case studies from roughly 25 care units (program participant or their representative, primary caregiver, and state support broker/consultant).	Description of unmet needs within four areas: ADLs, IADLs, transportation, routine health care. Who saw and expressed them (within the “care unit”); and whether there are thoughts on how to address unmet needs.	Reanalysis of 76 case studies from the initial evaluation of the C&C controlled experiment in 2000–2002. Aim to better understand the complexities of unmet need.
Shippee et al. (2020)	Survey period: June to December 2015	Secondary analysis of National Core Indicators-Aging and Disability survey data, with focus on Minnesota adults aged 65+ years	N = 1,936 older adults receiving HCBS	Self-rated health and sense of control	Using data from the 2015 National Core Indicators-Aging and Disability survey, Minnesota subsample, examine racial/ethnic differences in self-rated health and sense of control. Additionally, identify the mediating role of function, emotional, and financial stressors
Fortinsky et al. (2020)	May 2015 to February 2018	Pragmatic trial with randomized design. Random assignment of persons living with ADRD and caregivers as dyads	Care of Persons with Dementia in their Environments (COPE) intervention + usual HCBS: n = 145 dyads Usual HCBS only: n = 146 dyads	Pre-/post-randomization evaluation of outcome measures. Outcomes were measured pre-randomization, and 4- and 12-month post-randomization. Outcomes for persons with ADRD: functional independence, activity engagement, self-reported QoL, and behavioral/psychological symptoms. Caregiver outcomes: perceived well-being, confidence using dementia management strategies, degree of distress caused by behavioral/psychological symptoms.	To incorporate the COPE intervention into the CHCPE, a HCBS program for older adults at risk for NF admission. COPE includes 10 home visits from an occupational therapist, single home visit, and follow-up telephone contact by an advanced practice nurse.
Fabius et al. (2020)	Sample period: March 2013 to April 2016	Connecticut MFP program, personalized care plans, and the MFP QoL survey	N = 647	Choice and control for HCBS beneficiaries, key domains of QoL for MFP program participants.	This study examines the effect of service type on risk of re-institutionalization and choice and control over day-to-day schedule/activities for MFP participants 65 years and older in Connecticut who were receiving traditional HCBS vs hourly PCA/live-in caregiver services.
Kusmaul et al. (2020)	N/A	Qualitative semistructured interviews with direct care workers (DCWs) in two states in the Eastern United States	N = 12	Based on Kanter’s organizational theory of empowerment, specifically structural and psychological empowerment, semistructured interviews with DCWs were performed with the intent of identifying work environments that are related to high-quality care.	The intent of this study was to build up the knowledge based around DCW satisfaction. Specifically, the adequacy of organization resources, availability of information about clients, and level of support. Additionally, how autonomy, meaningful work, and organizational support affect client satisfaction and QoL.
Arora et al. (2021)	2017: baseline survey 2019: follow-up survey	Purposive sampling, telephone interviews, and content analyses	N = 49 beneficiaries enrolled in one of seven HCBS waivers in Iowa	Beneficiary experience of mandated MMC and experiences engaging with Iowa’s managed care ombudsman program; and how do experiences evolve with time?	Iowa transitioned Medicaid-eligible service recipients from fee-for-service to Medicaid-managed care in April 2016. The purpose of this study was to examine beneficiaries in mandated managed care, whose experiences may differ from voluntary programs.

Notes: ADLs = activities of daily living; ADRD = Alzheimer’s disease and related dementia; C&C = Cash and Counseling; HCBS = home- and community-based services; IADLs = instrumental activities of daily living; MFP = Money Follows the Person; MMC = Medicaid managed care; NF = nursing facility.

Table 2.

National Quality Forum Domains, Topic Areas (Subdomains), and Additional Details Related to Satisfaction

Domain	Topic area Additional details (if applicable)	Study	Summary of findings
A. Drivers of consumer satisfaction
Workforce	Person-centered approach to services; demonstrated competencies	Glass et al. (2005)	Key attributes of a “good” aide: Consistent, reliable, effective communication, honesty/trust, knowledgeability, focus energy on completion of tasks, “easy to have around.”
	Person-centered approach to services	Foster et al. (2003)	Participation in C&C was associated with consumers being less likely to report paid caregivers performing poorly, to be more satisfied with caregiver’s schedule, timely task completion, and respectful treatment.
Person-centered planning and coordination and community inclusion	Person-centered planning Social connectedness and relationships	Abbott et al. (2018)	Top 10 preferences for older adult consumers of HCBS: family contact, spending time outside, certain family/friend involvement in care, privacy, music, organization, giving gifts, being active at certain times of the day, meal choice, and traveling. Identification of preferences common to LTSS service recipients is relevant for quality improvement and satisfaction with services in the realms of caregiver/workforce, person-centeredness, and choice and control.
Choice and control	Self-direction	Harry et al. (2016)	C&C program led to consumer: -Autonomy -Control over budget and employment opportunities allowed for flexibility in meeting changing health care needs.
		Schore et al. (2007)	Consumer satisfaction with C&C services and interactions with counseling staff: Most consumers used counseling services, and >80% found this assistance useful, especially bookkeeping and fiscal intermediary services. About 85%–98% of consumers would recommend similar services for those who are “seeking more control over their care.” Most said it “improved their lives” by giving them the agency to choose their own care providers.
		Wiener et al. (2007)	Older adult consumers of consumer-directed care were more satisfied than younger persons with disabilities that were consumers of agency-directed care. No evidence of lower satisfaction with consumer-directed care
		Kim et al. (2006)	Study findings show greater satisfaction with consumer-directed care. For the question, “how often do you have enough PAS hours?” 26% of those using consumer-directed care responded “always” vs 20% of people using agency-directed care. Of those using consumer-directed care, 33% responded “usually” to having enough personal assistance services (PAS) hours vs 26.0% of people using agency-directed.
	Personal choices and goals	Fabius et al. (2020)	Those receiving traditional HCBS were more likely to report having choice and control, while those with hourly PCAs or a live-in caregiver were less likely to report choice/control. Participants with both hourly and live-in PCA services had about half the odds of reporting choice/control. More ADL and IADL impairments, dementia or cognitive impairment, and unmet personal care needs were associated with lower odds of reporting choice and control.
	Personal choices and goals Choice of services and supports	Glass et al. (2008)	Caregiver support allows them to better manage physical/medical needs. Caregivers pay attention to the client, listen to what is asked, spend enough of the allotted time, and seem well-trained. Choice over when the caregiver comes, and care received matches the care plan.
	Personal choices and goals Choice of services and supports Personal freedoms and dignity of risk	Mahoney et al. (2006)	Discussion of the demonstration and evaluation of the C&C program and three state preliminary findings: -Consumer empowerment & autonomy. -Care felt more like a choice vs mandate. -Effective client support. -Adequate and appropriate staffing.
B. Drivers of negative consumer satisfaction
Workforce	Demonstrated competencies Sufficient workforce numbers, dispersion, & availability	Anderson et al. (2006)	Medicaid PAS: Inadequate recruitment. Service interruptions more importantly predict dissatisfaction than does having the same care aide over time. Worker training, respect, and treatment of consumers were associated with dissatisfaction.
	Person-centered approach to services Demonstrated competencies	Glass et al. (2008)	Not enough time spent with clients. Worker training and communication with client regarding needs.
	Person-centered approach to services Demonstrated competencies Culturally competent Sufficient workforce numbers, dispersion, & availability	Glass et al. (2005)	Aides arriving late and/or not showing up. Inadequate worker training and high turnover rates. Lack of diverse workforce.
Person-centered planning and coordination	Coordination	Grossman (2019)	Interstate variation in Medicaid HCBS and personal care assistance policies impede consumer/client ability to move across states given service delays or gaps. The ability to move is considered essential to self-determination.
Service delivery and effectiveness	Needs and goals realized	Khatutsky et al. (2006)	Higher unmet ADL/IADL needs associated with decreased satisfaction.
		Glass et al. (2008)	Unmet expectations of care, sometimes outside the scope of aides (e.g., transportation to medical appointments) training and job requirements. Lack of transparency with regards to individual plan of care.
	Delivery	Anderson et al. (2006)	Service interruptions due to the time it takes to find qualified replacement staff (i.e., recruitment issues) were more predictive of negative satisfaction than having different workers over time. Worker training, respect, and treatment of consumers.
		Arora et al. (2021)	Service approval delays and delayed provider payments. Care coordination challenges, case managers overwhelmed and disorganized.
		Grossman (2019)	Interstate variation in Medicaid policy (conflict between need for services and desire for cross-state moves). Gaps or delays in PCA service access due to move. Navigating “hoops of fire” to access PCA services in different states.
Holistic health and functioning	Individual health and functioning	Khatutsky et al. (2006)	Younger consumers with “significant” health problems and those in group settings were less satisfied with services. Bowel/bladder incontinence were specifically associated with dissatisfaction among older survey respondents.
	Health promotion and prevention	Shippee et al. (2020)	Difference in self-rated health among White and Asian older adults is explained by assistance with self-care and negative mood. For Hispanic/Latinx and White older adults, the difference in sense of control was fully explained by assistance with self-care and skipping meals. Financial and food insecurity play an important role in satisfaction with services.
Equity	Equitable access and resource allocation Transparency and consistency	Mullan et al. (2009)	Racially and ethnically diverse (Black, Chinese American, Biracial, and Hispanic/Latino adults), low-income consumers of PAS participated in focus groups about their satisfaction/opinion on current services. Concerns over unreliability attributable to race/ethnicity and neighborhood environments. Geographic disparities with accessing care (especially in rural areas). Need for cultural humility in service design/provision. Design of systems of care is rooted in inequity.
C. Provider and stakeholder perceptions of consumer satisfaction
Workforce	Demonstrated competencies Person-centered approach to services	Brossoie et al. (2005)	Concerns over workforce unreliability, poor work ethic, and poor technical skills are best resolved by discussion the problem with employee, client, and family members. Conflict between client and provider was resolved by the agency considering replacing the care aide, counsel them, monitor performance, and/or offer additional training.
	Safety of and respect for the workerAdequately compensated, with benefits	Kusmaul et al. (2020)	Direct care worker (DCW) satisfaction is related to the adequacy of agency/organization resources, availability of information about clients, and level of support. DCW autonomy, meaningful work, and organizational support positively affect client satisfaction and quality of life.
Service delivery and effectiveness	Needs and goals realized	Mahoney et al. (2019)	Unmet needs with regards to health-related problems, environmental issues, and caregivers’ need for relief. Unmet need regarding health-related issues could be due to collective care literacy, lack of coordination with or knowledge of community resources. Anticipated needs in the future. Prioritizing one need might mean deprioritizing others given a limited budget.
	Delivery	Robison et al. (2012)	Lack of family availability for providing informal supports. Inadequate formal supports (program service limits, transportation barriers, inadequate housing). Limited access to mental health/substance abuse services.
	Delivery Needs and goals realized	Stewart et al. (2006)	Difficulty navigating system, barriers more pronounced when compared to NF services. Limited access to information or guidance on how to access services to match need. HCBS service users’ perceived lack of knowledge on the part of state program officers. Inflexible programs creating unmet need.
Caregiver support	Access to resources	Herrera et al. (2013)	Hispanic caregivers are more likely to access support services from community-based agencies, least likely from Area Agencies on Aging (AAAs). African Americans are more likely to use AAAs to facilitate service use. Hispanic and African American caregivers cared for older adults in urban areas, with greater rates of disability, poverty, and Medicaid use. SES and educational attainment in minority groups is associated with which agencies they receive services from, and ultimately their likelihood to transition to institutional care.
	Family caregiver/natural support involvement Family caregiver/natural support well-being	Shugarman et al. (2002)	Caregiver dissatisfaction with the level of care services provided to the recipient was predictive of hospitalization. Caregiver distress associated with client death.
		Fortinsky et al. (2020)	Care of Persons with Dementia in their Environments (COPE) intervention for AD/ADRD patients and their caregivers includes 10 home visits from an occupational therapist, single home visit, and follow-up telephone contact by an advanced practice nurse. After COPE: -Caregivers report increased perceived well-being. -Less frequent and less severe behavioral/psychological symptoms at 4 months. More engagement in meaningful activities at 12 months.
	Access to resources Family caregiver/natural support involvement	Feinberg and Newman (2004)	Flexibility both across and within states to design caregiver-support services promotes variability in service options which limit choices. Heavy reliance on family/informal caregivers without adequate support; caregivers as clients are a paradigm shift. State policy decisions to expand/develop caregiver-support services influenced by state officials’ views of family caregivers as service consumers.
	Training and skill-building	Kristof et al. (2017)	Caregivers largely desired more training opportunities and opportunities for collaboration with paid caregivers.

Notes: ADLs = activities of daily living; AD/ADRD = Alzheimer’s disease and Alzheimer’s disease and related dementia; C&C = Cash and Counseling; HCBS = home- and community-based services; IADLs = instrumental activities of daily living; LTSS = long-term services and supports; NF = nursing facility; SES = socioeconomic status.

Drivers of Positive Consumer Satisfaction

Twelve articles addressed at least one NQF domain and subdomain related to consumer satisfaction and service quality, including workforce (e.g., person-centered approaches to services, demonstrated competencies), person-centered planning and coordination, and choice and control (see Table 2).

• (a) Workforce: Paid caregivers who were consistent, reliable, trustworthy, respectful, knowledgeable, and easy to communicate with positively affected consumer satisfaction with services (Foster et al., 2003; Glass et al., 2005).

• (b) Person-Centered Planning and Coordination & Community Inclusion: Identifying preferences of individuals who receive both institutional and community-based care allows for transitional care pathways to better prioritize quality and satisfaction. HCBS consumers identified contact with family and friends, family involvement, privacy, and choice/control over level of activity, organization, travel, and meals, and spending time outside/in the community as key preferences (Abbott et al., 2018). Consumers identified the importance of maintaining relationships with family and friends, and exercising agency over how they spend their time. Understanding of preferences by care workers is essential to providing person-centered care (Abbott et al., 2018).

• (c) Choice and Control: HCBS programs oriented toward consumer choice and control were consistently associated with positive client satisfaction with services (Fabius et al., 2020; Glass et al., 2008; Harry et al., 2016; Kim et al., 2006; Mahoney et al., 2006; Schore et al., 2007; Wiener et al., 2007). Analyses of Cash and Counseling and Money Follows the Person programs, as well as consumer-directed versus agency-directed care initiatives, found increased satisfaction associated with consumer-directed care compared to agency-mandated care options. Many of the studies concluded that the features of person-centered services associated with positive satisfaction include client autonomy over the direction of their care—including financial oversight and the ability to hire care workers—which created opportunities for enhanced social participation and “improved their lives” (Schore et al., 2007). Self-direction also reduced unmet need as it allowed clients to consume the quantity and frequency of personal assistance/care services that best supported their needs (Kim et al., 2006).

Drivers of Negative Consumer Satisfaction

Major NQF domains related to negative consumer satisfaction included workforce, service delivery and effectiveness, holistic health and functioning, and equity (these include eight of the articles reviewed; see Table 1).

• (a) Workforce: Factors associated with negative consumer perceptions of quality include worker timeliness and professionalism highlighted by reports of workers showing up late or not arriving at all, being undertrained, not completing tasks as asked or expected by the consumer, and failing to meet general consumer expectations (Anderson et al., 2006; Glass et al., 2005, 2008). Additionally, consumers described inadequate requirements of direct care workers and high turnover as unmet needs, and commented on the lack of a diverse workforce (Anderson et al., 2006; Glass et al., 2005).

• (b) Person-Centered Planning and Coordination: Heterogeneity of Medicaid generosity and HCBS policy across states impedes consumers’ ability for self-determination, defined as the ability to move freely (Grossman et al., 2019). Should a consumer choose to move, interstate variation in program design can result in service gaps and delays.

• (c) Service Delivery and Effectiveness: Several articles identified shortcomings in program administration and benefit structure that lead to consumer dissatisfaction (Anderson et al., 2006; Arora et al., 2021; Glass et al., 2005; Grossman, 2019; Khatutsky et al., 2006). Unmet functional needs (activities of daily living/instrumental activities of daily living) were associated with poor satisfaction (Khatutsky et al., 2006). The most common issues were related to poor worker recruitment and high staff turnover at the agency level, which resulted in service interruptions for consumers (Anderson et al., 2006). The types of services offered in different states and by plan options were also shown to have serious implications for whether consumer’s needs were met. Arora et al. (2021) provided a unique example of how Iowa’s transition to Medicaid-managed care resulted in service and reimbursement delays as well as care coordination challenges that affected consumer satisfaction with services.

• (d) Holistic Health and Functioning: Individual health and functioning plays a key role in service satisfaction, with differences by age group. Khatutsky et al. (2006) found that younger consumers with significant health problems were less satisfied with services, while incontinence was associated with dissatisfaction among older adults. Additionally, Shippee et al. (2020) note significant differences in self-rated health by race and ethnicity. This is affected by the level of support with self-care activities, and financial and food insecurity.

• (e) Equity: Racial and ethnic minority consumers noted that systems of care are rooted in inequity (Mullan et al., 2009). They described unreliable services due to race/ethnicity, and the neighborhoods in which they lived. For rural residents, services were often inaccessible or required commuting to larger, urban areas. Consumers called for cultural humility when designing and providing services.

Perspectives of Providers and Stakeholders on Consumer Satisfaction

Major NQF domains related to provider and stakeholder perceptions of consumer satisfaction included workforce, service delivery and effectiveness, and caregiver support (10 articles were included).

• (a) Workforce and Caregiver Support: Brossoie et al. (2005) and Feinberg & Newman (2004) note that providers shared many of consumers’ concerns around the workforce, including lack of training, professionalism, and reliability, and how these negative attributes contribute to a lack of high-quality HCBS services. They also described how in order to provide high-quality care, providers must pay special attention to the role of family caregivers—such as providing more training opportunities and collaboration with paid caregivers—and acknowledge that heterogeneity in caregiver-support programs affects overall satisfaction with services (Kristof et al., 2017).

Herrera et al. (2013) described racial disparities in informal caregiver burden and demonstrated that this disproportionate caregiving burden increases the chances of care recipients entering institutionalized care. The disproportionate burden may be influenced by a lack of assistance as it relates to physical, emotional, mental, social, and financial well-being, skill-building, and/or access to supportive resources (NQF, 2016). In support of this, Kusmaul et al. (2020) found that agencies that support direct care worker autonomy and meaningful work influence consumer satisfaction and quality of life, but that worker well-being could be enhanced through opportunities for continued training and skill development as well as opportunities for career advancement. Similarly, Shugarman et al. (2002) described how reports of caregiver dissatisfaction were associated with increased likelihood of care recipient hospitalization and mortality. The consequences associated with caregiver satisfaction and burden help to emphasize the importance of caregiver-support programs. For example, Fortinsky et al. (2020) described the benefits of support programs, most notably how providers were able to implement a training intervention for informal dementia caregivers that successfully enhanced caregiver well-being and ultimately the quality of provided services.

• (b) Service Delivery and Effectiveness: Mahoney et al. (2019) and Stewart et al. (2006) described unmet care needs as a key driver of dissatisfaction with HCBS, wherein unmet care needs tend to stem from lack of coordination between providers and clients, inadequately assessing client needs, inflexible benefit structure, and challenges in navigating the HCBS system. It was also noted that these issues are much more prevalent in HCBS than in institutional long-term care systems. Robison et al. (2012) illustrate the consequences of this difference between HCBS and institutional care systems with their finding that clients experiencing unmet care and mental health needs were more likely to transition from HCBS to institutional care.

Discussion and Implications

We identified 27 studies that describe factors associated with consumer satisfaction of HCBS in the United States. Consumer satisfaction is influenced by several factors, including interactions with program administrators and direct care staff. HCBS programs that are easy to navigate, have professional staff, and respect for consumers were positively associated with satisfaction and service quality (Foster et al., 2003; Glass et al., 2005; Khatutsky et al., 2006). Service disruptions and lack of staff training were negatively associated with satisfaction (Anderson et al., 2006; Arora et al., 2021; Glass et al., 2005). These factors are similar to how consumers value other health services (Bull et al., 2022). High-quality HCBS is a goal of consumers, program administrators, and policymakers. Yet, there are a number of challenges that limit the ability to systematically evaluate HCBS program quality.

Most of the studies in our review focused on evaluating HCBS quality via consumer satisfaction within the context of a pilot evaluation of a program or service. While these data are impactful for understanding the relative benefits of a novel service compared to standard of care, none of the studies reported satisfaction with an entire HCBS program. Reporting measures of satisfaction and associated quality at the program or state level is important to monitor and improve HCBS delivery. Standardized reporting would also allow a better understanding of variability in quality across programs and states; however, not all states have adopted reporting standards (Applebaum & Mahoney, 2016; Harrington et al., 2017). Ad hoc initiatives to measure satisfaction or quality at the program level include the NCI-AD survey, CAHPS surveys, and other state-sponsored surveys (CAHPS Home and Community Based Services Survey | Medicaid, n.d.). NCI-AD includes NQF-recommended domains that assess quality of life, community integration, and person-centered services for 29 states (Reports | NCI-AD (National Core Indicators-Aging and Disabilities), n.d.). HCBS CAHPS and CAHPS Home Health Care were developed by CMS and assessed HCBS and home care consumers’ experience with services and communication with providers (CAHPS Home and Community Based Services Survey | Medicaid, n.d.). Yet, uptake has been slow and data on implementation of these tools are needed. Perhaps one care setting to reference when considering uptake and implementation of standardized measurements is the Minimum Data Set (MDS) Assessment Section F, which includes an interview related to daily and activity preferences. Treating HCBS CAHPS or CAHPS Home Health Care as regulatory compliance activities—similar to the MDS—would streamline the collection of relevant quality and satisfaction measures.

Related to issues of standardized measurement, none of the identified articles could be mapped to NQF quality domains of human and legal rights, system performance and accountability, and consumer leadership in system development (see Supplementary Material Section 2). This might be due to the breadth of domain descriptions and subsequent possibility for overlap across domains. For example, we found that the human and legal rights subdomains are easily captured in under choice and control. This includes elements of privacy and informed decision making, which overlap considerably with personal freedoms and dignity of risk and self-direction—subdomains of choice and control. More clarity in how human and legal rights are measured through satisfaction, and how this differs from consumer direction is necessary. Additionally, the subdomains and existing measurement concepts for system performance and accountability and consumer leadership in system development are largely related to system-level performance, having less to do with consumer satisfaction. For example, suggested measurement concepts for these domains include uploading managed care organization responses to stakeholder feedback, LTSS rebalancing, consumer retention in services, and costs per beneficiary. Generally, most of the proposed measures may be subject to psychometric weakness as they have yet to undergo rigorous psychometric tests in the development and validation phases. Psychometric validation is essential when the instruments are intended to measure latent constructs such as satisfaction and quality of life, especially when the instruments meant to measure these latent constructions were initially validated on a different population.

All U.S. states offer HCBS programs to meet the needs of older adults and people with disabilities in the community (Musumeci et al., 2020). Many states deliver HCBS waivers through capitated managed care programs (i.e., managed LTSS; Musumeci, 2014). Managed care has the potential to improve care coordination, improve quality of care, and increase consumer satisfaction (Archibald et al., 2018). Managed care providers and health plans may be more willing to invest in services that are valued by consumers such as person-centered planning, self-direction, and care coordination (Musumeci, 2014). However, to control costs, managed care organizations may structure plan benefits in a way that limits consumer choice (e.g., prior authorization requirements). We identified two studies (Arora et al., 2021; Grossman, 2019) that found plan benefit structure can have serious implications for quality and satisfaction through covered benefits, provider reimbursement, and case management. For example, Arora et al. (2021) found that HCBS waiver beneficiaries who were mandatorily transitioned from fee-for-service to Medicaid-managed care reported cuts and delays in service approvals, challenges with care coordination, and delayed provider payments. Managed care in HCBS is likely to continue to expand. As states adopt managed care models to serve older adults and people with disabilities, policymakers must be aware of how incentives may enhance or hinder consumer choice, satisfaction, and quality of care.

1915(c) HCBS waivers enable vulnerable older adults and persons with disabilities to live in their own homes and engage with their communities (Segelman et al., 2017). 1915(c) waivers serve diverse beneficiaries including: people who are aging, people with functional limitations, people with intellectual disabilities, and people with traumatic brain injury. Beneficiaries have different cultures and social norms, speak different languages, and may live in hard-to-reach settings, meaning consumer satisfaction is highly person-dependent (Mullan et al., 2009). Thus, it may be challenging for states to design HCBS programs to effectively meet the needs of all the people they serve. One way for HCBS programs to meet the needs of a diverse population is to ensure the workforce is representative of the people served and centers culturally inclusive practices. Two studies in our review found that the lack of diversity in the HCBS workforce contributes to dissatisfaction with services (Glass et al., 2005; Khatutsky et al., 2006), and racial and ethnic minority older adults report lower self-reported health and sense of control (Shippee et al., 2020). The home care workforce (personal care aides, home health aides) is disproportionately comprised of women of color (87% women, 61% people of color)—specifically Hispanic/Latinx and Black/African American women—who are more likely to live in poverty than their male counterparts (Campbell, 2017; McCall & Scales, 2022; Robert, 2022). Systemic inequities based on race/ethnicity and gender identity have devalued the direct care workforce (Robert, 2022), with calls for a complete system overhaul as part of the coronavirus disease 2019 pandemic. The 2022 NASEM Report on Nursing Home Quality highlights key workforce challenges that are directly applicable to HCBS, including ensuring competitive wages and benefits, providing career advancement opportunities, and covering continued education and training programs (National Academies of Sciences, 2022). HCBS programs that fail to meet the needs of consumers by providing high-quality supports will result in beneficiaries with unmet needs, poor health outcomes, and poor satisfaction (Chong et al., 2022). As states evaluate their HCBS programs, they must be cognizant that outcomes may differ for the diverse clients they serve, but that care is universally improved by empowering the direct care workforce.

Gaps and Future Research

As noted above, we identified studies that evaluated satisfaction with HCBS in the context of small pilot evaluations or specific programs in the United States. An important next step is to systematically evaluate consumer satisfaction for the entire population of people enrolled in HCBS programs. Second, we were only able to map studies to 7 of 11 NQF domains (NQF, 2016). Efforts are needed to systematically collect and evaluate the full set of NQF domains, especially those that involve consumer involvement in system development and accountability. While we were able to map all but three NQF domains to articles found in our search, we did not include a comparison to other care settings as they were not included in our search. Third, all identified evidence on satisfaction with HCBS came from small observational studies. A crucial next step is to understand the causal relationship between HCBS program design, consumer satisfaction, and quality of life and quality of care. Although randomized trials of HCBS may not be feasible, large observational studies using high-quality quasi-experimental methods (e.g., differences-in-difference or instrumental variables) may be one approach to determine the effect of HCBS program design on quality. Lastly, the trend toward home- and community-based care is not a uniquely American phenomenon. The population is aging globally, with simultaneous declines in the working-age population, availability of informal care, and preference for remaining in the community spanning high- and low- and middle-income countries alike (Han et al., 2020). Many countries—including Denmark, the Netherlands, and South Korea—have implemented social models of long-term care to care for their aging populations (American Academy of Actuaries, 2015). Much like U.S. states, countries globally vary considerably in their financing, program design, and service delivery (Fischer et al., 2022). As the provision of home- and community-based care in the United States continues to evolve, attention should be paid to global models of care that provide high-quality, satisfactory services.

Strengths and Limitations

A major strength of our scoping review is the 21-year review period and our focus on consumer satisfaction, specifically the views of Medicaid beneficiaries. We show the paucity of peer-reviewed studies in this area, thus providing evidence for more research funding to understand Medicaid beneficiaries’ experiences and satisfaction with HCBS across the United States. Limitations of our review include exclusion of gray literature or state/federal reports. This may be a disadvantage because HCBS programs are primarily funded by states and internal research/evaluations may not be published in peer-reviewed journals. Program evaluations are often included in legislative and federal reports to meet reporting requirements, so we may have missed state-led initiatives on measuring quality and satisfaction with HCBS services. Linkage to NQF quality domains was done after reviewing the included literature, and thus does not represent all domains of high-quality HCBS discussed in the NQF report. Given the heterogeneous descriptions of HCBS satisfaction and quality, and the evolving landscape both before and after the NQF report in 2016, it is likely that our search parameters and inclusion criteria did not capture all published literature describing this subject matter. Lastly, while we do cover two decades of the literature, we are excluding any published literature before 2000. We believe this a justifiable exclusion given the rapid change in HCBS policy and health reform efforts after 2000.

Conclusion

High-quality HCBS enables clients to safely age in their community, is easy to navigate, has professional staff, and respects consumers. The systematic collection of consumer and caregiver satisfaction with HCBS is crucial to informing changes to HCBS programs and policies. Standardized HCBS quality measures and data collection efforts will allow policymakers to compare outcomes across states and ultimately improve the delivery of HCBS.

Author Note

REDCap access was provided through the University of Minnesota Clinical & Translational Science Institute (CTSI). Research conducted by CTSI is supported by the National Institutes of Health National Center for Advancing Translational Sciences (grant number UL1TR002494). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, National Center for Advancing Translational Sciences.

Funding

This work was supported by the National Institute on Aging (1R01AG069771-01; 1RF1AG069771-01).

Conflict of Interest

None declared.

Data Availability

There are no data or analytic coding materials associated with this article. Materials related to search strategy are available as supplemental materials. All studies included for analysis are listed in Table 1 and included in the References section; excluded articles are available as Supplementary Material. Preregistration was not required for this scoping review.