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Quality of life and health utility are important outcomes for patients with Alzheimer's disease (AD) and central for demonstrating the value of new treatments. Estimates in biomarker‐confirmed AD populations are missing, potentially delaying payer approval of treatment. We examined whether health utility, assessed with the EuroQoL‐5 3‐level version (EQ‐5D‐3L), differed between individuals with a positive or negative amyloid beta (Aβ) biomarker in patients with mild cognitive impairment (MCI) and cognitively unimpaired (CU) participants from the Swedish BioFINDER study (n = 578). Participants with prodromal AD (Aβ‐positive MCI) reported better health utility (n = 79, mean = 0.81, 95% confidence interval [CI] 0.77–0.85) than Aβ‐negative MCI (mean = 0.71, 95% CI 0.64–0.78), but worse than controls (Aβ‐negative CU, mean = 0.87, 95% CI 0.86–0.89). Health utility in preclinical AD (Aβ‐positive CU; mean = 0.86, 95% CI 0.83–0.89) was similar to controls. This relatively good health utility in prodromal AD suggests a larger value of delaying progression to dementia than previously anticipated and a great value of delaying clinical progression in preclinical AD.

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Background Health utility values (e.g. as assessed with EuroQoL 5 domains, EQ5D) are central for the health economic evaluation of candidate treatments for Alzheimer's disease (AD). Currently available estimates in early stages of disease including preclinical and prodromal AD are limited, and do not separate patients by biomarker status. Method Baseline data from the longitudinal Swedish BioFINDER study on patients in different stages of AD and cognitively healthy controls were analyzed. Subjects were either cognitively unimpaired healthy elderly controls sampled from a population‐based cohort, or patients with cognitive complaints (subjective cognitive decline (SCD) or mild cognitive impairment (MCI)), but without dementia, referred to memory clinics. Health utility was assessed with EQ5D (3 level version) recalculated into a utility index with the UK tariff; higher scores representing higher utility. Cerebrospinal fluid amyloid biomarker positive subjects were defined as prodromal AD if they met criteria for MCI and otherwise defined as preclinical AD. Result Five‐hundred‐ninety‐nine non‐dementia subjects aged between 60 and 88 years were assessed at baseline. Individuals with SCD or MCI reported lower health utility (n=245, mean=0.78, 95% CI 0.75‐0.80) compared to cognitively healthy elderly controls (n=354, mean 0.90 95% CI 0.88‐0.91), regardless of biomarker status. Prodromal AD patients reported higher health utility (n=79, mean=0.81, 95% CI 0.77‐0.85) compared to amyloid‐negative MCI patients (n=54, mean=0.71, 95% CI 0.64‐0.77). Prodromal AD patients were less often smoking, fewer had prior ischemic heart disease and were less often treated with anti‐depressants, compared to amyloid‐negative MCI patients. Subjects with preclinical AD reported health utility (n=114, mean 0.86, 95% CI 0.83‐0.88) which were similar to amyloid‐negative cognitively unimpaired (i.e. SCD and controls) (n=305, mean=0.87, 95% CI 0.86‐0.89). Conclusion Health utility was lower in biomarker confirmed preclinical and prodromal AD patients compared to cognitively healthy controls. The analysis suggests that amyloid biomarker status is an important determinant of health utility in patients with MCI. This may be explained by more severe co‐morbidities in biomarker negative patients. In particular, the cause of their cognitive symptoms (e.g. cardiovascular disease) may be associated with a greater impact on their quality of life in early stages of disease.

ZusammenfassungHintergrund: Ergotherapeuten wissen viel über die Verbesserungen von Handlungskompetenzen, aber sie wissen relativ wenig über deren Verlust. Ziel: Die vorliegende Studie befasst sich mit Veränderungen und dem Verlust der Handlungskompetenz am Beispiel von Personen mit multipler Sklerose und wie diese von den Betroffenen erlebt werden. Methode: Ein qualitatives Forschungsdesign wurde gewählt, um die Erfahrungen von Veränderungen der Handlungskompetenz von MS -Betroffenen zu ergründen. Acht Personen wurden mittels eines Leitfadeninterviews befragt. Sie gaben Auskunft über Veränderungen in ihrem Beschäftigungsverhalten und in ihrem Alltag, darüber wie sie den Anforderungen der Umwelt gerecht wurden und mit den Veränderungen umgingen. Durch die Methode des konstanten Vergleichs wurden die Interviews ausgewertet. Ergebnisse: Die Resultate zeigen, dass sich die Veränderungen langsam bemerkbar machen und sich oft über Jahre hinziehen. Die Informanten benutzten so lange als möglich ihre gewohnten Handlungsmuster und verwendeten nur, wenn unbedingt nötig und meistens unbewusst, Adaptationen und Hilfsmittel. Handlungen wurden erst aufgegeben, wenn Aufwand und Ertrag nicht mehr im Gleichgewicht standen. Der Verlust von Sport -und Freizeitaktivitäten wurde als besonders einschneidend erlebt. Veränderungen in der Handlungsfähigkeit führten zu neuen Handlungsmustern und zu einer kritischen Auseinandersetzung mit dem Selbstwertgefühl und der Identität. AbstractBackground: OTs know a lot how to improve occupational performance, but they know very little about the process of loosing occupational performance. Objective: The study describes the process of changes and losses in occupational performance in persons with multiple sclerosis and the consequences for them in their everyday lives. Method: A qualitative study-design was chosen to portray the experience of changes in the occupational performance in persons with MS. Eight persons were interviewed using a interview-guide. They described experienced changes in their occupational performance, changes in their everyday lives, how they met environmental demands and how they lived with the experienced changes. Results: The findings show that changes in occupational performance were perceived as a slow process, often lasting over years. The informants used as long as possible their usual repertoire of occupational patterns and adopted, mostly unconsciously, different adaptive strategies. Occupations were only abandoned, if their commitment in comparison with the benefit was out of balance. The loss of sportive and leisure activities were experienced as drastic. Changes in the occupational patterns led to new patterns and to a critical appraisal of self-esteem and identity. Conclusion: For OTs it is very important to know about adaptive strategies which use the afflicted persons, for integrating those into therapeutic interventions so that the persons can as long as possible execute the desired occupation. The study shows the importantance of IT-technology for persons ...