Person‐Centred Proxy Assessment for People With Advanced Dementia: Transparent Expert Consultation on the Integrated Palliative Care Outcome Scale for Dementia

OBJECTIVES: The study aimed to strengthen the content validity of a proxy-reported person-centred outcome measure, the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), and make recommendations to support its use in routine care to facilitate person-centred care provision. METHODS: Transparent Expert Consultation using modified nominal group technique in a stakeholder workshop and online consensus survey to generate and prioritise recommendations. Participants included international experts in dementia, palliative care, and geriatrics, and family carers as lived experts. Recommendations from the workshop were thematically analysed and grouped according to priority ranking: 'retained', 'uncertain', and 'excluded'. Those categorised 'uncertain' were presented in a survey to determine agreement (median) and consensus (interquartile range). For each recommendation, survey participants rated level of agreement from 1 (no agreement) to 9 (high agreement), with option for narrative comments. Descriptive statistics were used for data analysis, and narrative comments analysed thematically. RESULTS: Twenty-seven participants attended the workshop generating 179 individual recommendations. Following combination and de-duplication, 61 recommendations remained. The recommendations formed three themes: 'The construct of a person-centred palliative care measure' (n = 13 recommendations), 'Proxy assessment of subjective symptoms and concerns' (n = 27 recommendations), and 'Implementation considerations' (n = 21 recommendations). Key recommendations from the workshop concerned the construct of person-centred assessment specifically how individuals are affected by symptoms and concerns, and use of IPOS-Dem over time to know the person and monitor symptoms and concerns. Twenty-one recommendations were grouped as 'uncertain' and included in the survey, with 31 survey respondents (74% response rate). Of those recommendations, agreement was highest for the four training recommendations including training on the concept of person-centred care and training to strengthen reliable proxy assessment (medians ≥ 8). CONCLUSION: The findings of this study assert IPOS-Dem as a measure to support person-centred assessment and monitoring of distressing symptoms and concerns to improve knowledge of the individual and inform care provision. The term 'affected by' is crucial for the validity of IPOS-Dem as a measure of distressing symptoms but creates challenges for reliable proxy assessment. The recommendations have informed a revised IPOS-Dem to strengthen its content validity and identified further developments including training and decision-support tools to enable person-centred care provision, improve reliability of proxy assessment, and inform care planning.