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Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review
  1. Thomas E Page1,
  2. Nicolas Farina2,
  3. Anna Brown1,
  4. Stephanie Daley2,
  5. Ann Bowling3,
  6. Thurstine Basset4,
  7. Gill Livingston5,
  8. Martin Knapp6,
  9. Joanna Murray7,
  10. Sube Banerjee2
  1. 1School of Psychology, University of Kent, Canterbury, UK
  2. 2Centre for Dementia Studies, Brighton and Sussex Medical School, Brighton, UK
  3. 3Department of Health Sciences, University of Southampton, Southampton, UK
  4. 4Department of Lived Experience Advisory Panel, Sussex Partnership NHS Foundation Trust, Hove, UK
  5. 5Division of Psychiatry, University College London, London, UK
  6. 6Department of Social Policy, London School of Economics, London, UK
  7. 7Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK
  1. Correspondence to Professor Sube Banerjee; s.banerjee{at}bsms.ac.uk

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 and other dementias; Huntington's disease; Parkinson's disease; multiple sclerosis; and motor neuron disease).

Design Systematic review.

Methods Instruments were identified using 5 electronic databases (PubMed, PsycINFO, Web of Science, Scopus and the International Bibliography of the Social Sciences (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 COnsensus based Standards for the selection of health Measurement Instruments (COSMIN) checklist. The psychometric properties of each instrument were examined.

Results 676 articles were identified. Following screening and lateral searches, a total of 8 articles were included; these reported 7 disease-specific carer QOL measures. Limited evidence was available for the psychometric properties of the 7 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.

  • Neurodegenerative diseases
  • quality of life
  • psychometrics
  • measurement
  • carers

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors All authors were involved in the design of the study. TEP designed the literature search and screened the titles and abstracts of the identified studies in collaboration with NF. TEP and NF performed the data extraction and quality assessment. Preparation of the manuscript was completed by TEP. AB and SB edited and reviewed the manuscript. All authors approved the manuscript. The views expressed are the authors' own.

  • Funding This work was supported by an Alzheimer's Society Project Grant (234ASPG14017).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

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