Abstract
BACKGROUND: Dementia is a progressive and terminal illness. Symptoms are present for people with dementia across all stages, leading to poor quality of life and considerable carer burden. In acute and community care services, no holistic, person-centred outcome tools are available for nurses and informal caregivers to measure symptoms and needs from the person`s with dementia point of view. We therefore undertook validation (exploring semantic/conceptual equivalence, content validity, and views on clinical utility) for a measure (IPOS-Dem) in the community and acute care setting in Switzerland. METHODS: This was a rigorous, multi-step, cross-sectional, multi-method study conducted with nurses and relatives caring for people with dementia in the community and acute care setting. Multiple components were aligned: 1) forward and backward translation from German to Swiss German to achieve semantic equivalence; 2) focus groups to explore clinical utility and conceptual equivalence; 3) cognitive debriefing to review content validity. An expert review was included at the end of each phase. RESULTS: Six people from the public and 24 nurses/relatives were included. Semantic equivalence was achieved after making 14 changes to the wording of items. Participants judged the IPOS-Dem (CH) as a clinically useful intervention in the domains of appropriateness, accessibility, practicability, and acceptability for the following reasons: (1) it enables support for informal caregivers, (2) it provides an overview of the priorities of care, thus supporting symptom review, (3) it allows nurses with different qualifications to contribute critical observations, thus fostering communication and teamwork, and (4) it increases an awareness of change in symptoms throughout the disease trajectory. In the cognitive debriefing interviews, setting and respondent-dependent differences in the conceptual understanding of item descriptors were observed for 11 of 31 items. CONCLUSION: In this novel work, we demonstrate the newly-translated and culturally-adapted IPOS-Dem (CH) is a relevant and comprehensive measure for persons with mild to severe dementia. It can aid a generalist workforce across settings to assess palliative care-relevant symptoms and concerns.