Abstract
Background and Objectives
This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.
Methods
Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review.
Results
An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents.
Conclusions
The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.
Similar content being viewed by others
References
Wu YT, Fratiglioni L, Matthews FE, Lobo A, Breteler MM, Skoog I, Brayne C. Dementia in western Europe: epidemiological evidence and implications for policy making. Lancet Neurol. 2016;15(1):116–24.
Beesley S. Informal care in England: the Wanless social care review. London: King’s Fund; 2006.
Carers’ Trust. The role of a carer. What is a Carer? 2015. http://www.carers.org/role-carer. Accessed 8 Oct 2018
Prince M, Knapp M, Guerchet M, McCrone P, Prina M, Comas-Herrera A, et al. Dementia UK update. 2nd ed. London: Alzheimer’s Society; 2014.
Buckner L, Yeandle S. Valuing carers 2015—the rising value of carers’ support. London: Carers UK; 2015.
Dickinson C, Dow J, Gibson G, Hayes L, Robalino S, Robinson L. Psychosocial intervention for carers of people with dementia: what components are most effective and when? A systematic review of systematic reviews. Int Psychogeriatr. 2017;29(1):31–43.
Dow J, Robinson J, Robalino S, Finch T, McColl E, Robinson L. How best to assess quality of life in informal carers of people with dementia; a systematic review of existing outcome measures. PLoS One. 2018;13(3):18.
Jones C, Edwards RT, Hounsome B. Health economics research into supporting carers of people with dementia: a systematic review of outcome measures. Health Qual Life Outcomes. 2012;10:142.
Moniz-Cook E, Vernooij-Dassen M, Woods R, Verhey F, Chattat R, De Vugt M, et al. A European consensus on outcome measures for psychosocial intervention research in dementia care. Aging Ment Health. 2008;12(1):14–29.
Page TE, Farina N, Brown A, Daley S, Bowling A, Basset T, et al. Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review. BMJ Open. 2017;7(3):11.
Ware J, Sherbourne C. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–83.
EuroQoL Group. EuroQoL—a new facility for the measurement of health- related quality of life. Health Policy. 1990;16:199–208.
World Health Organization. WHOQOL-BREF introduction, administration, scoring, and generic version of the instrument. Geneva: World Health Organization; 1996.
Furlong W, Feeny D, Torrance G, Barr R. The Health Utilities Index (HUI) system for assessing health-related quality of life in clinical studies. Ann Med. 2001;33(5):375–84.
Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010;19(4):539–49.
Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer’s disease: patient and caregiver reports. J Ment Health Aging. 1999;5(1):21–32.
Vickrey BG, Hays RD, Maines ML, Vassar SD, Fitten J, Strickland T. Development and preliminary evaluation of a quality of life measure targeted at dementia caregivers. Health Qual Life Outcomes. 2009;7:56.
Cole JC, Ito D, Chen YJ, Cheng R, Bolognese J, Li-McLeod J. Impact of Alzheimer’s Disease on Caregiver Questionnaire: internal consistency, convergent validity, and test-retest reliability of a new measure for assessing caregiver burden. Health Qual Life Outcomes. 2014;12:114.
Brouwer WB, van Exel NJ, van Gorp B, Redekop WK. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006;15(6):1005–21.
Hoefman RJ, van Exel NJ, Foets M, Brouwer WB. Sustained informal care: the feasibility, construct validity and test–retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care. Aging Ment Health. 2011;15:1018–27.
Doyal L, Gough I. A theory of human need. Basingstoke: Macmillan; 1991.
McKenna SP, Doward LC. The needs-based approach to quality of life assessment. Value Health. 2004;7:S1–3.
Lloyd J, Patterson T, Muers J. The positive aspects of caregiving in dementia: a critical review of the qualitative literature. Dementia. 2016;15(6):1534–61.
Sörensen S, Duberstein P, Gill D, Pinquart M. Dementia care: mental health effects, intervention strategies, and clinical implications. Lancet Neurol. 2006;5(11):961–73.
Diwan S, Hougham GW, Sachs GA. Chronological patterns and issues precipitating grieving over the course of caregiving among family caregivers of persons with dementia. Clin Geront. 2009;32:358–70.
Sanders S, Corley C. Are they grieving? A qualitative analysis examining grief in caregivers of individuals with Alzheimer’s disease. Soc Work Health Care. 2003;37:35–53.
Cuijpers P. Depressive disorders in caregivers of dementia patients: a systematic review. Aging Ment Health. 2005;9(4):325–30.
Joling KJ, van Marwijk HW, Veldhuijze AE, van der Horst HE, Scheltens P, Smit F, van Hout HP. The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk? Am J Geriatr Psychiatry. 2015;23(3):293–303.
Alzheimer’s Society. Turning up the volume: unheard voices of dementia. 2017. https://www.alzheimers.org.uk/turningupthevolume. Accessed 8 Oct 2018.
Wilburn J, McKenna SP, Twiss J, Kemp K, Campbell S. Assessing quality of life in Crohn’s disease: development and validation of the Crohn’s Life Impact Questionnaire (CLIQ). Qual Life Res. 2015;24(9):2279–88.
Doward LC, Spoorenberg A, Cook SA, Whalley D, Helliwell PS, Kay LJ, et al. Development of the ASQoL: a quality of life instrument specific to ankylosing spondylitis. Ann Rheum Dis. 2003;62(1):20–6.
McKenna SP, Doward LC, Whalley D, Tennant A, Emery P, Veale DJ. Development of the PsAQoL: a quality of life instrument specific to psoriatic arthritis. Ann Rheum Dis. 2004;63(2):162–9.
Grewal I, Lewis J, Flynn T, Brown J, Bond J, Coast J. Developing attributes for a generic quality of life measure for older people. Preferences or capabilities? Soc Sci Med. 2006;62(8):1891–901.
Hunt SM, McKenna SP. The QLDS: a scale for the measurement of quality of life in depression. Health Pol. 1992;22:307–19.
Streiner DL, Norman GR. Health measurement scales: a practical guide to their development and use. Oxford: Oxford University Press; 1995.
Pini S, Ingleson E, Megson M, Clare L, Wright P, Oyebode JR. A needs-led framework for understanding the impact of caring for a family member with dementia. Gerontologist. 2017;58(2):e68–77.
QSR International Pty Ltd. NVivo qualitative data analysis Software, Version 11. Melbourne: QSR International Pty Ltd; 2017.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
Willis GB. Cognitive interviewing and questionnaire design: a training manual. Atlanta: US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics; 1994.
Coale K. An introduction to psychological assessment and psychometrics. 2nd ed. London: Sage; 2014.
Blair J, Conrad FG. Sample size for cognitive interview pretesting. Public Opin Q. 2011;75(4):636–58. https://doi.org/10.1093/poq/nfr035.
Peterson CH, Peterson NA, Powell KG. Cognitive interviewing for item development: validity evidence based on content and response processes. Meas Eval Couns Dev. 2017;50(4):217–23. https://doi.org/10.1080/07481756.2017.1339564.
Al-Janabi H, Flynn TN, Coast J. Development of a self-report measure of capability wellbeing for adults: the ICECAP-A. Qual of Life Res. 2012;21(1):167–76.
U.S. Food and Drug Administration. Guidance for industry. Patient reported outcome measures: use in medical product development to support labelling claims. 2009. https://www.fda.gov/downloads/drugs/guidances/ucm193282.pdf. Accessed 8 Oct 2018.
Acknowledgements
We would like to acknowledge the input of our co-investigator colleagues: Dr Zoe Hoare, University of Bangor, Professor Paul Kind, University of Leeds, and Emeritus Professor Alan Tennant, University of Leeds, as well as advice and help with recruitment from Carers Leeds and the Alzheimer’s Society. We would also like to thank all those carers who participated.
Author information
Authors and Affiliations
Contributions
All authors contributed to the overall study design and reviewed and approved the paper. MM, EI and SP collected the data and contributed to analysis. JO wrote the paper with help from PW and SP.
Corresponding author
Ethics declarations
Conflict of interest
Jan Oyebode, Penny Wright, Simon Pini and Mike Horton each declare that this work was supported by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) (Grant title: “HQLC Dementia Carers Instrument Development: DECIDE” [MR/M025179/1]) and that the grant is registered on the UK Research and Innovation Gateway (http://gtr.ukri.org/projects?ref=MR/M025179/1). They also declare that they have received financial support for travel to meetings for the study, manuscript preparation or other purposes from the grant funder as part of the award only. In addition, Penny Wright declares that she is the principal investigator and was the main applicant for the funding that was received from the MRC and NIHR, and Jan Oyebode declares her position as a co-investigator. Emma Ingleson, Molly Megson, Linda Clare, Hareth Al-Janabi and Carol Brayne have no conflicts of interest to declare.
Funding
This work was supported by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) (Grant title: “HQLC Dementia Carers Instrument Development: DECIDE” [MR/M025179/1]). Jan Oyebode, Penny Wright, Simon Pini and Mike Horton have received financial support for travel to meetings for the study, manuscript preparation or other purposes from the grant funder as part of the award only.
Ethical approval and informed consent
Ethical approval was given in November 2015 by a UK National Health Service ethics committee. Informed consent was obtained from all individual participants included in the study.
Data availability statement
The University of Leeds will make a link to the published study available through the White Rose repository. The datasets generated and/or analysed during the current study are available from https://doi.org/10.5518/375.
Electronic supplementary material
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Oyebode, J.R., Pini, S., Ingleson, E. et al. Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia. Patient 12, 125–136 (2019). https://doi.org/10.1007/s40271-018-0334-4
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40271-018-0334-4