UK General Population Utility Values for the SIDECAR-D Instrument Measuring the Impact of Caring for People With Dementia

Dementia affects many people, with numbers expected to grow as populations age. Many people with dementia receive informal/family/unpaid care, for example, from a spouse or child, which may affect carer quality of life. Measuring the effectiveness of health/social care interventions for carers requires a value measure of the quality-of-life impact of caring. This motivated development of the Scales Measuring the Impact of Dementia on Carers-D (SIDECAR-D) instrument. This study aimed to obtain general population values for SIDECAR-D to aid incorporating the impact of caring in economic evaluation. Members of the UK general public completed a best–worst scaling object case survey, which included the 18 SIDECAR-D items and EQ-5D-3L descriptions. Responses were analyzed using scale-adjusted finite mixture models. Relative importance scores (RISs) for the 18 SIDECAR-D items formed the SIDECAR-D relative scale measuring the relative impact of caring. The SIDECAR-D tariff, on the full health = 1, dead = 0 scale, was derived by rescaling EQ-5D-3L and SIDECAR-D RISs so the EQ-5D-3L RISs equaled anchored valuations of the EQ-5D-3L pits state from a visual analog scale task. Five hundred ten respondents completed the survey. The model had 2 parameter and 3 scale classes. Additive utility decrements of SIDECAR-D items ranged from –0.05 to –0.162. Utility scores range from 0.95 for someone affirming 1 item to –0.297 for someone affirming all 18. SIDECAR-D is a needs-based scale of the impact on quality of life of caring for someone with dementia, with a valuation tariff to support its use in economic evaluation. •Many people with dementia receive informal care; Scales Measuring the Impact of Dementia on Carers-D (SIDECAR-D) is a survey instrument measuring the burden of caring.•Two scoring systems are provided, the SIDECAR-D relative scale, which measures the relative burden of caring on a 0-100 scale, and the SIDECAR-D tariff, which measures the burden on a scale anchored at full health = 1 and dead = 0.•Utility decrements of SIDECAR-D items can be as great as –0.162 on the full health = 1, dead = 0 scale.