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

Anna Brown; Thomas E. Page; Stephanie Daley; Nicolas Farina; Thurstine Basset; Gill Livingston; Jessica Budgett; Laura Gallaher; Yvonne Feeney; Joanna Murray; Ann Bowling; Martin Knapp; Sube Banerjee

doi:10.1007/s11136-019-02186-w

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

Anna Brown^*, Thomas E. Page, Stephanie Daley, Nicolas Farina, Thurstine Basset, Gill Livingston, Jessica Budgett, Laura Gallaher, Yvonne Feeney, Joanna Murray, Ann Bowling, Martin Knapp, Sube Banerjee

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

31 Citations (Scopus)

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: ‘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.

Original language	English
Pages (from-to)	2299-2310
Number of pages	12
Journal	Quality of Life Research
Volume	28
Issue number	8
DOIs	https://doi.org/10.1007/s11136-019-02186-w
Publication status	Published - 15 Aug 2019

Keywords

Alzheimer’s disease
Bifactor model
Caregiver
Dementia
Factor analysis
Family carer
Quality of life

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10.1007/s11136-019-02186-w

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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

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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",

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T2 - development and validation of C-DEMQOL

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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.

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KW - Bifactor model

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KW - Dementia

KW - Factor analysis

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ER -

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

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Keywords

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