Measuring nonmedical, person-centered outcomes for home and community-based service participants: Selecting and defining concepts

Abstract

Background: Quality measures can monitor whether home- and community-based services (HCBS) are delivered effectively and support the outcomes desired by persons served. Nonmedical, person-centered quality measures complement Medicaid's HCBS Quality Measure Set.

Objectives: (1) Determine the aspects of quality most important to HCBS recipients, (2) identify aspects of quality not included in quality outcome instruments, and (3) select and define aspects for new quality outcome measures.

Methods: A Participant Council representing HCBS recipients identified aspects of quality important to them. We reviewed person-centered instruments to identify gaps in coverage of concepts related to the National Quality Forum's HCBS quality domains of choice and control, community inclusion, and holistic health and function. Focusing on concepts prioritized by the Participant Council, we identified gaps in current instruments defined as: (1) no instrument addresses the concept; (2) measures not person-centered; (3) measures not outcome-focused; or (4) measures lack evidence of adequate reliability and validity across HCBS populations.

Results: We defined 18 concepts for which adequate measures are lacking and selected nine for further development, including choice and control over (1) living arrangement, (2) how time is spent, (3) money, (4) important relationships, (5) personal expression (6) food and nutrition, and (7) healthcare and health; as well as (8) dignity of risk; and (9) community engagement.

Conclusions: Despite the existence of many HCBS instruments, there remains a need for nonmedical, person-centered concepts to complement Medicaid's HCBS Quality Measure Set. Next steps are to develop and test items that measure these nine concepts.