Skip to main content
Kent Academic Repository

Instruments Measuring the Disease-Specific Quality of Life of Family Carers of People with Neurodegenerative Diseases: A Systematic Review

Page, Thomas, Farina, Nicolas, Brown, Anna, Daley, Stephanie, Bowling, Ann, Bassett, Thurstine, Livingston, Gill, Knapp, Martin, Murray, Joanna, Banerjee, Sube and others. (2017) Instruments Measuring the Disease-Specific Quality of Life of Family Carers of People with Neurodegenerative Diseases: A Systematic Review. BMJ Open, 7 (3). Article Number 13611. ISSN 2044-6055. (doi:10.1136/bmjopen-2016-013611) (KAR id:60281)


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
DOI/Identification number: 10.1136/bmjopen-2016-013611
Projects: C-DEMQOL- Measurement of quality of life in family carers of people with dementia: development of a new instrument for evaluation
Uncontrolled keywords: Neurodegenerative diseases, quality of life, systematic review, measurement, psychometric properties
Subjects: H Social Sciences > H Social Sciences (General)
R Medicine > R Medicine (General)
Divisions: Divisions > Division of Human and Social Sciences > School of Psychology
Funders: Alzheimer's Society (
Depositing User: T.E. Page
Date Deposited: 09 Feb 2017 12:18 UTC
Last Modified: 04 Mar 2024 19:09 UTC
Resource URI: (The current URI for this page, for reference purposes)

University of Kent Author Information

Page, Thomas.

Creator's ORCID:
CReDIT Contributor Roles:

Brown, Anna.

Creator's ORCID:
CReDIT Contributor Roles:
  • Depositors only (login required):

Total unique views for this document in KAR since July 2020. For more details click on the image.