Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR).
Carers
Dementia
Needs-led
Psychometrics
Quality of life
Rasch measurement
Journal
The Gerontologist
ISSN: 1758-5341
Titre abrégé: Gerontologist
Pays: United States
ID NLM: 0375327
Informations de publication
Date de publication:
03 04 2021
03 04 2021
Historique:
received:
06
06
2019
pubmed:
7
11
2019
medline:
22
4
2021
entrez:
6
11
2019
Statut:
ppublish
Résumé
A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends). Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken. Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test-retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100). SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.
Sections du résumé
BACKGROUND AND OBJECTIVES
A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends).
METHODS
Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken.
RESULTS
Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test-retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100).
DISCUSSION AND IMPLICATIONS
SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.
Identifiants
pubmed: 31688902
pii: 5613258
doi: 10.1093/geront/gnz136
pmc: PMC8023371
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e1-e11Subventions
Organisme : Medical Research Council
ID : MR/M025179/1
Pays : United Kingdom
Organisme : Department of Health
Pays : United Kingdom
Informations de copyright
© The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America.
Références
Alzheimers Dement. 2017 Oct;13(10):1077-1080
pubmed: 28935202
Qual Life Res. 2010 May;19(4):539-49
pubmed: 20169472
Arthritis Rheum. 2007 Dec 15;57(8):1358-62
pubmed: 18050173
J Chiropr Med. 2017 Dec;16(4):346
pubmed: 29276468
J Appl Meas. 2016;17(4):416-431
pubmed: 28009589
Int J Nurs Stud. 2009 Mar;46(3):380-93
pubmed: 19059593
J Clin Epidemiol. 1988;41(5):475-82
pubmed: 3367178
Nurs Stand. 2016 May 25;30(39):38-43
pubmed: 27224629
Health Qual Life Outcomes. 2006 Sep 27;4:70
pubmed: 17005038
BMC Public Health. 2018 Oct 30;18(1):1214
pubmed: 30376832
Am J Geriatr Psychiatry. 2011 Jun;19(6):491-6
pubmed: 21502853
Am J Geriatr Psychiatry. 2019 Aug;27(8):838-848
pubmed: 30917903
Patient. 2019 Feb;12(1):125-136
pubmed: 30315554
Value Health. 2004 Sep-Oct;7 Suppl 1:S35-8
pubmed: 15367243
Aging Ment Health. 2010 Jan;14(1):113-9
pubmed: 20155528
Gerontologist. 2018 Mar 19;58(2):e68-e77
pubmed: 29562360
Health Qual Life Outcomes. 2009 Feb 19;7:15
pubmed: 19228398
Health Qual Life Outcomes. 2012 Nov 26;10:142
pubmed: 23181515
Gerontologist. 2016 Oct;56(5):e70-88
pubmed: 27102056
Soc Sci Med. 1995 Nov;41(10):1403-9
pubmed: 8560308
J Appl Meas. 2002;3(2):205-31
pubmed: 12011501
Qual Life Res. 2016 May;25(5):1059-92
pubmed: 26475138
Ann Rheum Dis. 2003 Jan;62(1):20-6
pubmed: 12480664
Aging Ment Health. 2008 Jan;12(1):14-29
pubmed: 18297476
J Appl Meas. 2018;19(3):271-282
pubmed: 30169335
Psychol Methods. 2002 Mar;7(1):105-25
pubmed: 11928886
Appl Psychol Meas. 2017 May;41(3):178-194
pubmed: 29881087
Health Policy. 1992 Oct;22(3):307-19
pubmed: 10122730
Gerontologist. 1983 Aug;23(4):349-57
pubmed: 6352420
J Appl Meas. 2009;10(4):348-54
pubmed: 19934524
PLoS One. 2018 Mar 14;13(3):e0193398
pubmed: 29538433
Qual Life Res. 2015 Sep;24(9):2279-88
pubmed: 25702267
BMJ Open. 2017 Mar 29;7(3):e013611
pubmed: 28360239
Aging Ment Health. 2003 May;7(3):186-94
pubmed: 12775399
Aging Ment Health. 2015 Jul;19(7):571-5
pubmed: 25847497
Health Qual Life Outcomes. 2014 Nov 30;12:164
pubmed: 25433373
Health Soc Care Community. 2017 Mar;25(2):734-742
pubmed: 27278859
Health Policy. 1990 Dec;16(3):199-208
pubmed: 10109801
J Appl Gerontol. 2019 Sep;38(9):1304-1318
pubmed: 28438063