Person-centered measures of Home- and Community-Based Services: Identifying approaches to measuring outcomes, services, and supports

This review aimed to describe the extent to which home- and community-based service (HCBS) outcome instruments published in the peer-reviewed literature are person-centered. We sought to identify measures that relate to progress toward or achievement of outcomes and service effectiveness. The research questions we evaluated were: (1) What non-medical, person-centered outcome measures are used in HCBS? (2) What non-medical, person-centered effectiveness measures of HCBS supports are used? We worked with a research librarian to develop a bibliographic search strategy and identified text words and controlled vocabulary terms describing person-centered measures, non-medical context, home and community-based services, HCBS instruments, as well as effectiveness and quality. We performed the search on Medline (Ovid); The Cochrane Library (Wiley); CINAHL Plus with Full Text (Ebsco); Scopus (Elsevier); PsycInfo (Ebsco); and ProQuest dissertations & theses global. We searched each database from date of inception to December 7, 2020. We limited the search to English-language studies and, when possible, studies conducted in the United States. We restricted findings based on date of publication, with a requirement that published studies reflect work undertaken after the passing of the Olmstead ruling in 1999. The eligibility criteria were (1) mentions a person-centered non-medical measurement tool, (2) setting limited to HCBS (e.g., not medical rehabilitation or skilled nursing facilities), (3) includes samples with intellectual or developmental disability (I/DD), physical disability, psychiatric disability, age-related disability, written in English, (5) peer-reviewed source, and (6) uses a United States sample. The initial search yielded 8,066 studies. After title and abstract screening, we moved 178 articles to full-text review, of which we retained 25 which passed a quasi-sensitivity analysis. A fuller understanding of if and how HCBS users are living satisfying and self-determined lives requires that outcome measures be augmented to incorporate the desires, needs, and goals of users. Outcome measures should incorporate not merely user satisfaction with supports, but questions that allow for the connection between outcomes desired by people and the perception of how well supports are working to help achieved those outcomes. In other words, measures should gather information about how useful services and supports are in helping people make progress towards their desired outcomes. There are only a few efforts to do this. The University of Minnesota Research and Training Center on HCBS Outcome Measurement is developing and piloting such questions, and the Shirley Ryan AbilityLab Research and Training Center on HCBS Outcome and Measurement is developing measures of perceived effectiveness of supports. These measures will allow HCBS provider organizations to embark on and monitor quality improvement initiatives and enhance opportunities for HCBS users to drive the implementation of person-centered supports. Beyond the most immediate uses of person-centered outcomes data, there are potential implications for public reporting of data on HCBS quality, use of data for certification and accreditation purposes, as well as reporting to state and federal agencies for the purposes of value-based payment. In conclusion, while the potential for person-centered outcomes data from HCBS is obvious, better measurement instruments are needed to achieve this goal. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement The National Institute on Disability, Independent Living and Rehabilitation Research funded this project as part of the Rehabilitation Research and Training Center on Home and Community Based Services (90RTGE0004-01-00) ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes All data produced in the present work are contained in the manuscript