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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.

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.

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.

Background This study investigated the validity of conceptualising elevated stress in parents of children who exhibit challenging behaviour within the framework of posttraumatic stress disorder (PTSD). It was hypothesised that parents of children with autism spectrum disorder (ASD), and parents of children with a rare disease would endorse greater PTSD symptomatology than parents of typically developing (TD) children, and that challenging child behaviours would positively predict PTSD symptomatology. Method The Life Events Checklist for DSM-5, Developmental Behaviour Checklist (Parent) and PTSD Checklist for DSM-5 were administered to 395 parents. Results Significantly more PTSD symptomatology was reported by parents of children with ASD and parents of children with a rare disease than parents of TD children, and challenging child behaviours positively predicted PTSD symptomatology in both groups. Conclusion A PTSD framework may validly explain elevated stress among some parents of children with ASD and parents of children with a rare disease, and has important implications for support delivered to parents by healthcare providers.