Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review

Page, Thomas E, Farina, Nicolas, Brown, Anna, Daley, Stephanie, Bowling, Ann, Bassett, Thurstine, Livingston, Gill, Knapp, Martin, Murray, Joanna and Banerjee, Sube (2017) Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review. BMJ Open, 7 (3). e013611. ISSN 2044-6055

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Abstract

Objective: Neurodegenerative diseases, such as dementia, have a profound impact on those with the conditions and their family carers. Consequently, the accurate measurement of family carers’ quality of life (QOL) is important. Generic measures may miss key elements of the impact of these conditions so using disease-specific instruments has been advocated. This systematic review aimed to identify and examine the psychometric properties of disease-specific outcome measures of QOL of family carers of people with neurodegenerative diseases (Alzheimer’s disease, other dementias; Huntington’s disease; Parkinson’s disease; Multiple Sclerosis; and Motor Neurone Disease).

Design: Systematic review.

Methods: Instruments were identified using five electronic databases (PubMed, PsycINFO, Web of Science, Scopus and IBSS) and lateral search techniques. Only studies which reported the development and/or validation of a disease-specific measure for adult family carers, and which were written in English, were eligible for inclusion. The methodological quality of the included studies was evaluated using the COSMIN checklist. The psychometric properties of each instrument were examined.

Results: Six hundred and seventy six articles were identified. Following screening and lateral searches, a total of eight articles were included; these reported seven disease-specific carer QOL measures. Limited evidence was available for the psychometric properties of the seven instruments. Psychometric analyses were mainly focused on internal consistency, reliability and construct validity. None of the measures assessed either criterion validity or responsiveness to change.

Conclusions: There are very few measures of carer QOL that are specific to particular neurodegenerative diseases. The findings of this review emphasise the importance of developing and validating psychometrically robust disease-specific measures of carer QOL.

Item Type: Article
Schools and Departments: Brighton and Sussex Medical School > Neuroscience
Subjects: R Medicine > RC Internal medicine > RC0321 Neurosciences. Biological psychiatry. Neuropsychiatry > RC0438 Psychiatry > RC0512 Psychopathology > RC0513 Psychoses > RC0521 Dementia
Depositing User: Nicolas Farina
Date Deposited: 09 Feb 2017 14:53
Last Modified: 22 Aug 2017 23:20
URI: http://sro.sussex.ac.uk/id/eprint/66700

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