Carer-reported measures for a dementia registry: A systematic scoping review and a qualitative study.

OBJECTIVES: Informal carers play a critical role in supporting people with dementia. We conducted a scoping review and a qualitative study to inform the identification and development of carer-reported measures for a dementia clinical quality registry. METHODS: Phase 1-Scoping review: Searches to identify carer-reported health and well-being measures were conducted in three databases (MEDLINE, PsycINFO and Embase). Data were extracted to record how the measures were administered, the domains of quality-of-life addressed and whether they had been used in a registry context. Phase 2-Qualitative study: Four focus groups were conducted with carers to examine the acceptability of selected measures and to identify outcomes that were important but missing from these measures. RESULTS: Phase 1: Ninety-nine carer measures were identified with the top four being the Zarit Burden Interview (n = 39), the Short-Form12/36 (n = 14), the Brief Coping Orientation to Problems Experienced scale and the Sense of Coherence scale (both n = 9). Modes of administration included face-to-face (n = 50), postal (n = 11), telephone (n = 8) and online (n = 5). No measure had been used in a registry context. Phase 2: Carers preferred brief measures that included both outcome and experience questions, reflected changes in carers' circumstances and included open-ended questions. CONCLUSIONS: Carer-reported measures for a dementia clinical quality registry need to include both outcome and experience questions to capture carers' perceptions of the process and outcomes of care and services. Existing carer-reported measures have not been used in a dementia registry context and adaption and further research are required.

Barriers and enablers to consumer and community involvement in research and healthcare improvement: Perspectives from consumer organisations, health services and researchers in Melbourne, Australia.

Partnering with consumers and patients and the community and public is a research and healthcare improvement imperative. Consumer and community involvement (CCI) requires behaviour change at the individual (researcher, health professional, manager), organisational (health service, university, medical research institute) and system level (funding policies, collaboration between organisations). To understand the barriers and enablers to meaningful CCI, a qualitative descriptive study was undertaken with researchers, health professionals, representatives from consumer organisations, and health services and ethics committees in Melbourne, Australia. Twenty-eight semi-structured interviews and one focus group were conducted in May-August 2019. Ethics approval was obtained. Thematic analysis was guided by the Capability, Opportunity and Motivation and Behaviour model (COM-B). Training of researchers and health professionals in CCI, benefits and systems and processes to undertake CCI, alongside incorporating CCI as a requirement for funding were identified as enablers. Lack of time and resources for CCI, challenges in finding consumers for projects and a perceived lack of evidence of the impact of CCI were barriers. These identified barriers and enablers will inform strategies to build the capacity of CCI at the individual, organisation and system level within the Australian Health Research Alliance.

Patient-Reported Outcome Measures to Inform Care of People With Dementia-A Systematic Scoping Review.

BACKGROUND AND OBJECTIVES: Patient-reported outcome measures (PROMs) captures the patient's perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient's perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. RESEARCH DESIGN AND METHODS: Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. RESULTS: Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. DISCUSSION AND IMPLICATIONS: PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.

How Can Quality of Dementia Care Be Measured? The Development of Clinical Quality Indicators for an Australian Pilot Dementia Registry.

BACKGROUND: A clinical quality registry (CQR) for dementia provides benefits to those living with dementia and their carers by improving the quality and experience of care through benchmarking and monitoring patient outcomes. CQRs use data collected to form clinical quality indicators (CQIs) through which variations in clinical processes and outcomes between different services and jurisdictions can be highlighted. OBJECTIVE: This modified Delphi study aimed to develop CQIs for a pilot Australian CQR for dementia and mild cognitive impairment. These CQIs are based on evidence, patient and caregiver experience, and clinician perspectives across the trajectory of care from diagnosis to end-of-life. METHODS: An initial list of indicators from existing dementia registries, academic literature, and clinical practice guidelines was synthesized. A working group of clinicians and registry experts further refined these indicators. A panel of experts comprised of a consumer, a carer, clinicians, consumer organization representatives, and academics. The experts participated in three phases of the modified Delphi study: 1) online survey for scoring importance and validity, 2) a one-day face-to-face discussion, and 3) final survey round to assess importance, validity, and feasibility. RESULTS: The panel assessed 33 CQIs and confirmed a final set of 18 indicators. The CQIs mapped to the domains of quality of diagnosis, quality of management, access to services and supports, and potentially preventable complications. These CQIs will be tested initially in memory clinics and inform the data collection processes for the Australia Dementia Network Registry (ADNet). CONCLUSION: A dementia CQR is fundamental to ongoing monitoring and development of good quality and consistent care across Australia.