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Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL

Research output: Contribution to journalArticle

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Measuring the quality of life of family carers of people with dementia : development and validation of C-DEMQOL. / Brown, Anna; Page, Thomas E.; Daley, Stephanie; Farina, Nicolas; Basset, Thurstine; Livingston, Gill; Budgett, Jessica; Gallaher, Laura; Feeney, Yvonne; Murray, Joanna; Bowling, Ann; Knapp, Martin; Banerjee, Sube.

In: Quality of Life Research, Vol. 28, No. 8, 15.08.2019, p. 2299-2310.

Research output: Contribution to journalArticle

Harvard

Brown, A, Page, TE, Daley, S, Farina, N, Basset, T, Livingston, G, Budgett, J, Gallaher, L, Feeney, Y, Murray, J, Bowling, A, Knapp, M & Banerjee, S 2019, 'Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL', Quality of Life Research, vol. 28, no. 8, pp. 2299-2310. https://doi.org/10.1007/s11136-019-02186-w

APA

Brown, A., Page, T. E., Daley, S., Farina, N., Basset, T., Livingston, G., Budgett, J., Gallaher, L., Feeney, Y., Murray, J., Bowling, A., Knapp, M., & Banerjee, S. (2019). Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL. Quality of Life Research, 28(8), 2299-2310. https://doi.org/10.1007/s11136-019-02186-w

Vancouver

Brown A, Page TE, Daley S, Farina N, Basset T, Livingston G et al. Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL. Quality of Life Research. 2019 Aug 15;28(8):2299-2310. https://doi.org/10.1007/s11136-019-02186-w

Author

Brown, Anna ; Page, Thomas E. ; Daley, Stephanie ; Farina, Nicolas ; Basset, Thurstine ; Livingston, Gill ; Budgett, Jessica ; Gallaher, Laura ; Feeney, Yvonne ; Murray, Joanna ; Bowling, Ann ; Knapp, Martin ; Banerjee, Sube. / Measuring the quality of life of family carers of people with dementia : development and validation of C-DEMQOL. In: Quality of Life Research. 2019 ; Vol. 28, No. 8. pp. 2299-2310.

Bibtex Download

@article{f25819a3e1874e648b66f73e458c86b1,
title = "Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL",
abstract = "Purpose: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. Results: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: {\textquoteleft}meeting personal needs{\textquoteright} (ω = 0.95); {\textquoteleft}carer wellbeing{\textquoteright} (ω = 0.91); {\textquoteleft}carer-patient relationship{\textquoteright} (ω = 0.82); {\textquoteleft}confidence in the future{\textquoteright} (ω = 0.90) and {\textquoteleft}feeling supported{\textquoteright} (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.",
keywords = "Alzheimer{\textquoteright}s disease, Bifactor model, Caregiver, Dementia, Factor analysis, Family carer, Quality of life",
author = "Anna Brown and Page, {Thomas E.} and Stephanie Daley and Nicolas Farina and Thurstine Basset and Gill Livingston and Jessica Budgett and Laura Gallaher and Yvonne Feeney and Joanna Murray and Ann Bowling and Martin Knapp and Sube Banerjee",
year = "2019",
month = aug,
day = "15",
doi = "10.1007/s11136-019-02186-w",
language = "English",
volume = "28",
pages = "2299--2310",
journal = "Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation",
issn = "0962-9343",
number = "8",

}

RIS (suitable for import to EndNote) Download

TY - JOUR

T1 - Measuring the quality of life of family carers of people with dementia

T2 - development and validation of C-DEMQOL

AU - Brown, Anna

AU - Page, Thomas E.

AU - Daley, Stephanie

AU - Farina, Nicolas

AU - Basset, Thurstine

AU - Livingston, Gill

AU - Budgett, Jessica

AU - Gallaher, Laura

AU - Feeney, Yvonne

AU - Murray, Joanna

AU - Bowling, Ann

AU - Knapp, Martin

AU - Banerjee, Sube

PY - 2019/8/15

Y1 - 2019/8/15

N2 - Purpose: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. Results: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: ‘meeting personal needs’ (ω = 0.95); ‘carer wellbeing’ (ω = 0.91); ‘carer-patient relationship’ (ω = 0.82); ‘confidence in the future’ (ω = 0.90) and ‘feeling supported’ (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.

AB - Purpose: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. Results: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: ‘meeting personal needs’ (ω = 0.95); ‘carer wellbeing’ (ω = 0.91); ‘carer-patient relationship’ (ω = 0.82); ‘confidence in the future’ (ω = 0.90) and ‘feeling supported’ (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.

KW - Alzheimer’s disease

KW - Bifactor model

KW - Caregiver

KW - Dementia

KW - Factor analysis

KW - Family carer

KW - Quality of life

UR - http://www.scopus.com/inward/record.url?scp=85064898472&partnerID=8YFLogxK

U2 - 10.1007/s11136-019-02186-w

DO - 10.1007/s11136-019-02186-w

M3 - Article

C2 - 31030366

AN - SCOPUS:85064898472

VL - 28

SP - 2299

EP - 2310

JO - Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

JF - Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

SN - 0962-9343

IS - 8

ER -

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