Yes / Objectives: Inconsistency in outcome measurement in dementia care trials impedes the comparisons of effectiveness between trials. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Method: We used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018. Results: Of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers), 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items. Conclusion: We identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions are most likely to be valued highly by people living with dementia. / This study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation.

Yes / It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from over 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured. We extracted self-reported OMIs from trials, reviews and reports of instrument development. Searches were undertaken in the ALOIS database, Medline, PsycINFO, CINAHL, socINDEX and COSMIN database. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency and responsiveness. We held a co-research workshop involving people living with dementia and care partners in order to ratify the findings. In total 347 OMIs were located from 354 sources. Of these 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the COS items, and no OMIs proceeded to further assessment. The 'best' available OMI is the Engagement and Independence in Dementia Questionnaire (EID-Q). This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons. / This study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation (UKRI).

Background: Generating evidence to inform care for pediatric medium-chain acyl-CoA dehydrogenase (MCAD) deficiency requires sustainable and integrated measurement of priority outcomes. Methods: From an existing Canadian cohort study, we evaluated the quality of metabolic clinic chart-abstracted data for measuring core outcomes for pediatric MCAD deficiency. We then modelled variation in emergency department (ED) use, in association with disease severity, child age, and distance to care. Results: Children with MCAD deficiency visit the metabolic clinic at least annually on average but we identified data quality challenges related to inconsistent definitions of core outcomes and missing information in patient charts. Rates of ED use were highest among children aged 6 to 12 months, with more severe disease, and living closest to care. Conclusion: While measuring core outcomes through the metabolic clinic for children with MCAD deficiency is feasible, harmonized data collection is needed to evaluate care and further understand ED use.

Objective: The primary aim of the study was to examine the automated linguistic analysis of the open-ended problem (PQ) and life-effects (LEQ) questionnaires to understand the psychological effects of tinnitus. Design: The study used a cross-sectional design. Participants completed online questionnaires which included demographic questions, several standardised patient-reported outcome measures (PROMs), and two open-ended questions focussing on PQ and LEQ related to tinnitus. The response to open-ended questions was analysed using the Linguistic Inquiry Word Count (LIWC) software to identify the frequency of text on various linguistic dimensions relevant to tinnitus. Study sample: 336 individuals with tinnitus. Results: The study results point to two broad findings. First, although PQ and LEQ have some similarities with PROMs (e.g. the linguistic dimension negative emotions having a weak positive correlation with anxiety and depression), no correlation with the number of dimensions suggests that the open-ended questions identify additional elements that are not captured in PROMs. Second, more linguistic dimensions from the PQ correlate with PROMs compared to LEQ suggesting that the current PROMs are problem-oriented. Conclusions: The study results support the idea that the use of open-ended questions in addition to PROMs may help optimise the efforts in examining the effects of chronic conditions such as tinnitus.