The Core Outcome Measures for Improving Dementia Care (COM-IC) project aims to develop a core outcome set for measuring the quality of care provided to people living with dementia in routine care settings. In a previous stage of the project, 17 core outcomes were identified. This study is the next step, aiming to review the literature to identify existing or recommended, validated scales for measuring the identified core outcomes.

A rapid review

Six electronic databases (PubMed, Embase (Elsevier), CINAHL Complete (EBSCOhost), APA PsycINFO (EBSCOhost), Web of Science (Clarivate) and Scopus (Elsevier) were searched. Searches were completed on 12 July 2024.

Peer-reviewed systematic reviews or original validation studies of scales measuring dignity; engagement in advance care planning; pain; quality of life; feeling safe and secure; emotional well-being; diagnosis of dementia; behavioural and psychological symptoms of dementia; the importance of relationships; meaningful activities; hygiene and comfort; resource utilisation and safety incidents for people living with dementia were included. Peer-reviewed systematic reviews or original validation studies of the scales to measure informal carers’ quality of life, their educational opportunities, formal carers’ morale and dementia-specific qualifications were also included. All studies were required to have been conducted among people living with dementia or carers, as appropriate, and to have full texts available in English.

Data on the scale’s name, the number of subscales, subscales’ names, the number of items, response options, scoring, estimated time to complete the scale, recommended frequency of data collection and the setting where the scale was first validated were extracted. Findings are presented in figures, tables and narrative texts.

A total of 88 validated scales were identified. No scales measuring dignity, engagement in advance care planning, feeling safe and secure, hygiene or safety incidents were validated for people living with dementia. No scale was identified to measure the importance of relationships for people living with dementia, the formal carers’ dementia-specific qualifications or the educational opportunities for informal carers. The review also describes the 50 recommended or validated scales.

Several validated or recommended scales exist to measure core outcomes identified as important for assessing the quality of care provided to people living with dementia in routine care settings. This review offers COM-IC stakeholders and other potential users with information on the validated/recommended scales to measure these core outcomes.

Brain and heart conditions are among the leading causes of illness and mortality in Canada. Heart failure is one of the fastest-growing cardiovascular conditions globally, with more than 100 000 Canadians diagnosed each year. Individuals with heart failure are at significantly increased risk of mental health challenges such as depression, anxiety and stress. However, healthcare services often remain siloed, treating physical and mental health separately. This complicates care for individuals with multiple chronic conditions. This multiyear study will adapt, test and accelerate changes to regional care delivery models in Eastern Ontario to optimise brain-heart health and generate knowledge to support the spread and scale of effective interventions that address community needs and priorities. We aim to: (1) identify resource gaps by mapping available services; (2) document strengths and challenges in care delivery; and (3) co-design, pilot test and evaluate an intervention developed based on the priority gap area(s) identified through objectives (1) and (2).

This community-based participatory action research study is led by a research coalition of patient and caregiver partners, care providers and leadership staff from two Ontario Health Teams. In Year 1, we will conduct asset mapping and community consultations with individuals living with heart failure, caregivers, care providers and service organisations to identify care gaps, strengths and opportunities for improvement around modifiable behavioural risk factors and brain-heart health. A scoping review will identify evidence-based strategies to address care gaps and inform the co-design of an intervention focused on supporting individuals with brain-heart interconnected conditions. In Year 2, we will co-design an intervention with community partners for implementation with clinical test sites. Year 3 will involve pilot testing the intervention and conducting outcome and process evaluations. This will inform future spread and scale of the intervention to other brain-heart conditions and new jurisdictions.

The study is approved by the Bruyère Health Research Ethics Board (M16-24-016). Findings will be disseminated through peer-reviewed publications, conference presentations and knowledge mobilisation activities such as social media, community events and local media outreach, as well as through dedicated engagement with Ontario Health partners and the Brain-Heart Interconnectome Network via retreats and collaborative forums.

Acknowledging equality, diversity and inclusion (EDI) in research is not only a moral imperative but also an important step in avoiding bias and ensuring generalisability of results. This protocol describes the development of STAndards for ReporTing EDI (START-EDI) in research, which will provide a set of minimum standards to help researchers improve their consistency, completeness and transparency in EDI reporting. We anticipate that these guidelines will benefit authors, reviewers, editors, funding organisations, healthcare providers, patients and the public.

To create START-EDI reporting guidelines, the following five stages are proposed: (i) establish a diverse, multidisciplinary Steering Committee that will lead and coordinate guideline development; (ii) a systematic review to identify the essential principles and methodological approaches for EDI to generate preliminary checklist items; (iii) conduct an international Delphi process to reach a consensus on the checklist items; (iv) finalise the reporting guidelines and create a separate explanation and elaboration document; and (v) broad dissemination and implementation of START-EDI guidelines. We will work with patient and public involvement representatives and under-served groups in research throughout the project stages.

The study has received ethical approval from the Imperial College London Research Ethics Committee (study ID: 7592283). The reporting guidelines will be published in open access peer-reviewed publications and presented in international conferences, and disseminated through community networks and forums.

The project is pre-registered within the Open Science Framework (https://osf.io/8udbq/) and the Enhancing the Quality and Transparency of Health Research Network.