Dataset Information

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

ABSTRACT: OBJECTIVES: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. METHODS: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. RESULTS: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. CONCLUSION: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.

SUBMITTER: Webb EJD

PROVIDER: S-EPMC7456787 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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

Webb Edward J D EJD Meads David D Al-Janabi Hareth H Kind Paul P Torelli Francesca F Horton Mike M Oyebode Jan J Wright Penny P

Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research 20200719 8

<h4>Objectives</h4>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 ...[more]

PMID: 32828221

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Project description:Aims and objectivesOverall, this study aimed to describe nursing care for patients with dementia in acute hospitals, with the objectives of describing the provided nursing care (a), nurses' attitudes and perceptions in caring for patients with dementia (b), and exploring how nurses deal with challenging behaviour (c). Additionally, we determined background variables associated with caring for people with dementia.BackgroundDue to comorbidities, people with dementia are frequently admitted to acute care hospitals. Here, they are at high risk of complications. Nurses strive for good care but regularly experience insufficient knowledge and skills regarding caring for people with dementia.DesignA cross-sectional survey study design.MethodsData were collected in seven Dutch acute hospitals and through social media. In total, 229 hospital nurses completed the questionnaire. We used the Geriatric In-Hospital Nursing Care Questionnaire and two subscales of Hynninen on managing challenging behaviour. This report followed the STROBE checklist.ResultsNurses express that they often apply general preventive interventions not explicitly related to dementia care. In general, nurses have mixed feelings about the nursing care provided in their department. For challenging behaviour, a variety of approaches, including restrictive measures and medication, is applied. The nurses' attitudes and perceptions are influenced by the type of hospital where the nurses work, the level of education, the number of hours nurses work, and if the nurses completed a course on dementia in the last year.ConclusionsDespite a positive attitude, nurses do not have the specific knowledge and skills needed to provide proper care. Nurses who recently completed a course on dementia had more positive attitudes and perceptions towards caring for patients with dementia.Relevance to clinical practiceThe results of this research can be used to improve the quality of nursing care for patients with dementia in acute hospitals.

Project description:BACKGROUND:People with dementia (PwD) vary in the degree of awareness they show about their situation, both generally concerning the diagnosis and more specifically around certain aspects or objects of awareness such as awareness of memory impairment, altered daily activities or social functioning. The extent of awareness or lack of awareness has consequences for well-being of PwD and carers, impacting on rates of hospital admission, institutionalization, mood, adjustment to diagnosis, outcomes from intervention and carer burden. An accurate estimation of a person's awareness could therefore be useful in a clinical setting to support PwD and their carers in making appropriate choices for health and care decisions, and could facilitate safe management by health care professionals, e.g. in an acute care setting. There is a range of different approaches to measuring awareness reported in the dementia research literature, with varying estimates of the frequency of lack of awareness, reflecting different methodologies and populations. The majority of the methods have been developed for research purposes and may not be suitable for clinical use. There are no recent scoping or systematic reviews of the available methods. METHOD:We will conduct a scoping review of published studies that have assessed awareness in people with dementia of all types, and all degrees of severity. The systematic search will include the electronic databases PubMed, Embase, PsycInfo, CINAHL, Web of Science and Cochrane Library, using search terms for dementia ("dement*" or "Alzheimer*" or "Pick's disease") and "awareness", "unawareness", "anosognosia", "insight", "denial", "metacognit*" or "discrepanc*" identified from pilot searches. Findings will be mapped and described according to the method used, the setting and diagnosis and the object of awareness studied if specified. Validated measures will be identified. DISCUSSION:This scoping review will provide an overview of the methods used to measure awareness in people with dementia, allowing comparison of the methods along with identification of validated measures. The methods or components will be appraised for potential clinical use, and gaps in research will be highlighted.

Dataset Information

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

Publications

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

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