Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)

J. E. Lutomski; N. J. A. van Exel; G. I. J. M. Kempen; E. P. Moll van Charante; W. P. J. den Elzen; A. P. D. Jansen; P. F. M. Krabbe; B. Steunenberg; E. W. Steyerberg; M. G. M. Olde Rikkert; R. J. F. Melis

doi:10.1007/s11136-014-0841-2

Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)

J. E. Lutomski^*
, N. J. A. van Exel
, G. I. J. M. Kempen
, E. P. Moll van Charante
, W. P. J. den Elzen
, A. P. D. Jansen
, P. F. M. Krabbe
, B. Steunenberg
, E. W. Steyerberg
, M. G. M. Olde Rikkert
, R. J. F. Melis

^*Corresponding author for this work

Value, Affordability and Sustainability (VALUE)

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

42 Citations (Scopus)

Abstract

PURPOSE: Validity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire).

METHODS: Data were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu ), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol's seven dimensions (CarerQol-7D) and caregiver's level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed.

RESULTS: The CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels.

CONCLUSIONS: Although good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted.

Original language	English
Pages (from-to)	1281-1293
Number of pages	13
Journal	Quality of Life Research
Volume	24
Issue number	5
DOIs	https://doi.org/10.1007/s11136-014-0841-2
Publication status	Published - May-2015

Keywords

CarerQol-7D
Caregivers
Quality of life
Geriatric health services
Visual analogue scale
INDIVIDUAL PARTICIPANT DATA
ECONOMIC EVALUATIONS
METAANALYSIS
BURDEN
FAMILY
IMPACT
BIAS

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Lutomski, J. E., van Exel, N. J. A., Kempen, G. I. J. M., van Charante, E. P. M., den Elzen, W. P. J., Jansen, A. P. D., Krabbe, P. F. M., Steunenberg, B., Steyerberg, E. W., Rikkert, M. G. M. O., & Melis, R. J. F. (2015). Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS). Quality of Life Research, 24(5), 1281-1293. https://doi.org/10.1007/s11136-014-0841-2

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title = "Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)",

abstract = "PURPOSE: Validity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire).METHODS: Data were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu ), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol's seven dimensions (CarerQol-7D) and caregiver's level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed.RESULTS: The CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels.CONCLUSIONS: Although good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted.",

keywords = "CarerQol-7D, Caregivers, Quality of life, Geriatric health services, Visual analogue scale, INDIVIDUAL PARTICIPANT DATA, ECONOMIC EVALUATIONS, METAANALYSIS, BURDEN, FAMILY, IMPACT, BIAS",

author = "Lutomski, \{J. E.\} and \{van Exel\}, \{N. J. A.\} and Kempen, \{G. I. J. M.\} and \{van Charante\}, \{E. P. Moll\} and \{den Elzen\}, \{W. P. J.\} and Jansen, \{A. P. D.\} and Krabbe, \{P. F. M.\} and B. Steunenberg and Steyerberg, \{E. W.\} and Rikkert, \{M. G. M. Olde\} and Melis, \{R. J. F.\}",

year = "2015",

month = may,

doi = "10.1007/s11136-014-0841-2",

language = "English",

volume = "24",

pages = "1281--1293",

journal = "Quality of Life Research",

issn = "1573-2649",

publisher = "Springer",

number = "5",

}

Lutomski, JE, van Exel, NJA, Kempen, GIJM, van Charante, EPM, den Elzen, WPJ, Jansen, APD, Krabbe, PFM, Steunenberg, B, Steyerberg, EW, Rikkert, MGMO & Melis, RJF 2015, 'Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)', Quality of Life Research, vol. 24, no. 5, pp. 1281-1293. https://doi.org/10.1007/s11136-014-0841-2

Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS). / Lutomski, J. E.; van Exel, N. J. A.; Kempen, G. I. J. M. et al.
In: Quality of Life Research, Vol. 24, No. 5, 05.2015, p. 1281-1293.

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

TY - JOUR

T1 - Validation of the Care-Related Quality of Life Instrument in different study settings

T2 - findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)

AU - Lutomski, J. E.

AU - van Exel, N. J. A.

AU - Kempen, G. I. J. M.

AU - van Charante, E. P. Moll

AU - den Elzen, W. P. J.

AU - Jansen, A. P. D.

AU - Krabbe, P. F. M.

AU - Steunenberg, B.

AU - Steyerberg, E. W.

AU - Rikkert, M. G. M. Olde

AU - Melis, R. J. F.

PY - 2015/5

Y1 - 2015/5

N2 - PURPOSE: Validity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire).METHODS: Data were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu ), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol's seven dimensions (CarerQol-7D) and caregiver's level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed.RESULTS: The CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels.CONCLUSIONS: Although good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted.

AB - PURPOSE: Validity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire).METHODS: Data were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu ), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol's seven dimensions (CarerQol-7D) and caregiver's level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed.RESULTS: The CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels.CONCLUSIONS: Although good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted.

KW - CarerQol-7D

KW - Caregivers

KW - Quality of life

KW - Geriatric health services

KW - Visual analogue scale

KW - INDIVIDUAL PARTICIPANT DATA

KW - ECONOMIC EVALUATIONS

KW - METAANALYSIS

KW - BURDEN

KW - FAMILY

KW - IMPACT

KW - BIAS

U2 - 10.1007/s11136-014-0841-2

DO - 10.1007/s11136-014-0841-2

M3 - Article

C2 - 25381121

SN - 1573-2649

VL - 24

SP - 1281

EP - 1293

JO - Quality of Life Research

JF - Quality of Life Research

IS - 5

ER -

Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)

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