Abstract

BackgroundThe Older Persons and Informal Caregivers Survey Minimal Dataset’s (TOPICS-MDS) questionnaire which measures relevant outcomes for elderly people was successfully incorporated into over 60 research projects of the Dutch National Care for the Elderly Programme. A composite endpoint (CEP) for this instrument would be helpful to compare effectiveness of the various intervention projects. Therefore, our aim is to establish a CEP for the TOPICS-MDS questionnaire, based on the preferences of elderly persons and informal caregivers.MethodsA vignette study was conducted with 200 persons (124 elderly and 76 informal caregivers) as raters. The vignettes described eight TOPICS-MDS outcomes of older persons (morbidity, functional limitations, emotional well-being, pain experience, cognitive functioning, social functioning, self-perceived health and self-perceived quality of life) and the raters assessed the general well-being (GWB) of these vignette cases on a numeric rating scale (0–10). Mixed linear regression analyses were used to derive the preference weights of the TOPICS-MDS outcomes (dependent variable: GWB scores; fixed factors: the eight outcomes; unstandardized coefficients: preference weights).ResultsThe mixed regression model that combined the eight outcomes showed that the weights varied from 0.01 for social functioning to 0.16 for self-perceived health. A model that included “informal caregiver” showed that the interactions between this variable and each of the eight outcomes were not significant (p > 0.05).ConclusionA preference-weighted CEP for TOPICS-MDS questionnaire was established based on the preferences of older persons and informal caregivers. With this CEP optimal comparing the effectiveness of interventions in older persons can be realized.

Highlights

  • The Older Persons and Informal Caregivers Survey Minimal Dataset’s (TOPICS-MDS) questionnaire which measures relevant outcomes for elderly people was successfully incorporated into over 60 research projects of the Dutch National Care for the Elderly Programme

  • Our primary findings support that a composite endpoint (CEP) for TOPICSMDS Care receiver questionnaire can be established based on the preference weights of both elderly persons and informal caregivers, which were derived by means of our vignette study

  • TOPICS-MDS has been successfully incorporated into all National Care for the Elderly Programme (NCEP) research projects

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Summary

Introduction

The Older Persons and Informal Caregivers Survey Minimal Dataset’s (TOPICS-MDS) questionnaire which measures relevant outcomes for elderly people was successfully incorporated into over 60 research projects of the Dutch National Care for the Elderly Programme. Our aim is to establish a CEP for the TOPICSMDS questionnaire, based on the preferences of elderly persons and informal caregivers. With the increasing proportion of elderly and its impact on the organization and delivery of health care in mind, the Dutch Ministry of Health, Welfare, and Sport commissioned the National Care for the Elderly Programme (NCEP) with the aim to develop a more proactive, integrated healthcare system for older patients. To achieve standardized outcome measurements within the NCEP, The Older Persons and Informal Caregivers Survey Minimal DataSet (TOPICS-MDS) instrument was constructed and integrated into the research protocols [7]. The instrument’s content and utility was evaluated by an independent multidisciplinary panel with expertise in gerontology, epidemiology, biostatistics and health services research and a plain language expert was commissioned to revise the instrument for clarity and readability

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