RESUMO
Background: Additional evidence is required to address the unintended consequences of medication use in older people and the required caregiver support. To inform priorities for future research efforts, different stakeholder perspectives are needed, including those of older people, caregivers, clinicians, and researchers. Objective: To develop a co-designed medication-related research agenda. Methods: A 12-member Advisory Council, half of which were older people and caregivers, designed the research. An 11-question survey to identify priorities for medication-related patient-centered outcomes research (PCOR) topics was administered to members of the Elder Care Medicine Network (ECMN) (ie, older people, caregivers, clinicians, and researchers). Respondents were categorized into two groups with hierarchical assignment to the clinician/research group over the older adult/caregiver group. Chi-square tests compared priority areas for medication-related PCOR between the two groups. Results: There were 53 responses (48% response rate) from the ECMN, with 39.6% (n = 21) from the clinician/researcher group and 60.4% (n = 32) from the older adult/caregiver group. The priority areas from both groups included safe ways to simplify medicines (62.2%), communicating with pharmacists and prescribers about medications (58.5%), and information about safe supplements with prescription medications (52.8%). Statistically significant differences existed between the two groups in the proportions choosing the priority areas. Conclusion: Co-design of a survey to identify priority areas for PCOR demonstrated successful engagement of older people and caregivers as research partners. While older people and caregivers may have differing perspectives on the importance of specific medication-related PCOR topics, simplifying medication regimen and health care communications were germane to both groups.
Assuntos
Cuidadores , Humanos , Cuidadores/psicologia , Idoso , Inquéritos e Questionários , Avaliação de Resultados da Assistência ao Paciente , Assistência Centrada no Paciente , Masculino , Feminino , Projetos de PesquisaRESUMO
BACKGROUND: Pilot data suggest that off-label, unmonitored antiepileptic drug prescribing for behavioral and psychological symptoms of dementia is increasing, replacing other psychotropic medications targeted by purposeful reduction efforts. This trend accelerated during the COVID-19 pandemic. Although adverse outcomes related to this trend remain unknown, preliminary results hint that harms may be increasing and concentrated in vulnerable populations. OBJECTIVE: Using a mixed methods approach including both a retrospective secondary data analysis and a national clinician survey, this study aims to describe appropriate and potentially inappropriate antiepileptic and other psychoactive drug prescribing in US nursing homes (NHs), characteristics and patient-oriented outcomes associated with this prescribing, and how these phenomena may be changing under the combined stressors of the COVID-19 pandemic and the pressure of reduction initiatives. METHODS: To accomplish the objective, resident-level, mixed-effects regression models and interrupted time-series analyses will draw on cohort elements linked at an individual level from the Centers for Medicare and Medicaid Services' (CMS) Minimum Data Set, Medicare Part D, Medicare Provider Analysis and Review, and Outpatient and Public Use Files. Quarterly cohorts of NH residents (2009-2021) will incorporate individual-level data, including demographics; health status; disease variables; psychotropic medication claims; comprehensive NH health outcomes; hospital and emergency department adverse events; and NH details, including staffing resources and COVID-19 statistics. To help explain and validate findings, we will conduct a national qualitative survey of NH prescribers regarding their knowledge and beliefs surrounding changing approaches to dementia care and associated outcomes. RESULTS: Funding was obtained in September 2022. Institutional review board exemption approval was obtained in January 2023. The CMS Data Use Agreement was submitted in May 2023 and signed in March 2024. Data access was obtained in June 2024. Cohort creation is anticipated by January 2025, with crosswalks finalized by July 2025. The first survey was fielded in October 2023 and published in July 2024. The second survey was fielded in March 2024. The results are in review as of July 2024. Iterative survey cycles will continue biannually until December 2026. Multidisciplinary dissemination of survey analysis results began in July 2023, and dissemination of secondary data findings is anticipated to begin January 2025. These processes are ongoing, with investigation to wrap up by June 2027. CONCLUSIONS: This study will detail appropriate and inappropriate antiepileptic drug use and related outcomes in NHs and describe disparities in long-stay subpopulations treated or not treated with psychotropics. It will delineate the impact of the pandemic in combination with national policies on dementia management and outcomes. We believe this mixed methods approach, including processes that link multiple CMS data sets at an individual level and survey-relevant stakeholders, can be replicated and applied to evaluate a variety of patient-oriented questions in diverse clinical populations. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/64446.