Identification and prioritisation of items for a draft participant-reported questionnaire to measure use of social care, informal care, aids and adaptations

Kirsty M. Garfield1, Gail A. Thornton2, Samantha Husbands1, Ailsa Cameron3, William Hollingworth1, Sian M. Noble1, Paul Roy4, Joanna C. Thorn1
1Health Economics Bristol, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK
2Public Contributor, University of Bristol, Bristol, UK
3School for Policy Studies, University of Bristol, Bristol, UK
4Bristol, North Somerset and South Gloucestershire Integrated Care Board, Bristol, UK

Tóm tắt

Resource-use measurement is integral for assessing cost-effectiveness within trial-based economic evaluations. Methods for gathering resource-use data from participants are not well developed, with questionnaires typically produced for each trial and rarely validated. The healthcare module of a generic, modular resource-use measure, designed for collecting self-report resource-utilisation data, has recently been developed in the UK. The objective of this research is to identify and prioritise items for new, bolt-on modules, covering informal care, social care and personal expenses incurred due to health and care needs. Identification and prioritisation, conducted between April and December 2021, involved a rapid review of questionnaires included in the Database of Instruments for Resource Use Measurement and economic evaluations published from 2011 to 2021 to identify candidate items, an online survey of UK-based social care professionals to identify omitted social care items and focus groups with UK-based health economists and UK-based people who access social care services either for themselves or as carers to prioritise items. The review identified 203 items. Over half of the 24 survey respondents reported no missing items. Five academic health economists and four people who access social care services participated in focus groups. Feedback shaped the social and informal care modules and indicated that no specific personal expenses were essential to collect in all trials. Aids/adaptations were highlighted as costly personal expenses when relevant; therefore, the personal expenses module was narrowed to aids/adaptations only. Draft informal care, social care and aids/adaptations modules were developed, ready for further testing.

Từ khóa


Tài liệu tham khảo

Ridyard CH, Hughes DA. Methods for the collection of resource use data within clinical trials: a systematic review of studies funded by the UK health technology assessment program. Value Health. 2010;13(8):867–72. https://doi.org/10.1111/j.1524-4733.2010.00788.x. Care Quality Commission. Beyond barriers: how older people move between health and social care in England 2018. https://www.cqc.org.uk/sites/default/files/20180702_beyond_barriers.pdf. Accessed 25 July 2020. Thorn JC, Coast J, Cohen D, Hollingworth W, Knapp M, Noble SM, et al. Resource-use measurement based on patient recall: issues and challenges for economic evaluation. Appl Health Econ Health Policy. 2013;11(3):155–61. https://doi.org/10.1007/s40258-013-0022-4. Franklin M, Thorn J. Self-reported and routinely collected electronic healthcare resource-use data for trial-based economic evaluations: the current state of play in England and considerations for the future. BMC Med Res Methodol. 2019;19(8):1–13. Thorn JC, Brookes ST, Ridyard C, Riley R, Hughes DA, Wordsworth S, et al. Core items for a standardized resource use measure (ISRUM): expert Delphi consensus survey. Value Health. 2018;21(6):640–9. https://doi.org/10.1016/j.jval.2017.06.011. Garfield K, Husbands S, Thorn JC, Noble S, Hollingworth W. Development of a brief, generic, modular resource-use measure (ModRUM): cognitive interviews with patients. BMC Health Serv Res. 2021. https://doi.org/10.1186/s12913-021-06364-w. Garfield KM. Development of a modular resource-use measure for use in economic evaluations alongside randomised controlled trials: University of Bristol, PhD thesis; 2022. https://research-information.bris.ac.uk/en/studentTheses/development-of-a-modular-resource-use-measure-for-use-in-economic. The King's Fund. Key facts and figures about adult social care 2023. https://www.kingsfund.org.uk/audio-video/key-facts-figures-adult-social-care. Accessed 3 Jan 2024. The King’s Fund. Informal workforce 2021. https://www.kingsfund.org.uk/projects/time-think-differently/trends-workforce-informal. Accessed 22 Apr 2021. Office for National Statistics. Health and unpaid care question development for Census 2021 2021. https://www.ons.gov.uk/census/censustransformationprogramme/healthandunpaidcarequestiondevelopmentforcensus2021. Accessed 22 Apr 2021. Office for National Statistics. ONS Census Transformation Programme. The 2021 Census. Assessment of initial user requirements on content for England and Wales. Carers topic report 2016. https://www.ons.gov.uk/census/censustransformationprogramme/consultations/the2021censusinitialviewoncontentforenglandandwales. Accessed 22 Apr 2021. Koopmanschap MA, van Exel NJA, van den Berg B, Brouwer WBF. An overview of methods and applications to value informal care in economic evaluations of healthcare. Pharmacoeconomics. 2008;26:269–80. https://doi.org/10.2165/00019053-200826040-00001. Ridyard CH, Hughes DA, Dirum Team. Development of a database of instruments for resource-use measurement: purpose, feasibility, and design. Value Health. 2012;15(5):650–5. https://doi.org/10.1016/j.jval.2012.03.004. Prinsen CAC, Mokkink LB, Bouter LM, Alonso J, Patrick DL, de Vet HCW, et al. COSMIN guideline for systematic reviews of patient-reported outcome measures. Qual Life Res. 2018;27:1147–57. https://doi.org/10.1007/s11136-018-1798-3. Pascoe KM, Waterhouse-Bradley B, McGinn T. Systematic literature searching in social work: a practical guide with database appraisal. Res Soc Work Pract. 2021;31(5):541–51. https://doi.org/10.1177/1049731520986857. Thorn J, Ridyard C, Riley R, Brookes S, Hughes D, Wordsworth S, et al. Identification of items for a standardised resource-use measure: review of current instruments. Trials. 2015;16(Suppl 2):O26. https://doi.org/10.1186/1745-6215-16-S2-O26. Patton MQ. Qualitative research & evaluation methods: integrating theory and practice. Thousand Oaks: Sage Publications; 2014. Carter SM, Shih P, Williams J, Degeling C, Mooney-Somers J. Conducting qualitative research online: challenges and solutions. Patient Patient Cent Outcomes Res. 2021;14:711–8. Glaser B, Strauss A. The discovery of grounded theory. Chicago: Aldine; 1967. Brown T. Social care provision in the UK and the role of carers. In: Lords Ho, editor. 2021. Beecham J, Knapp M. Measuring mental health needs. In: Thornicroft G, editor. Costing 7psychiatric interventions. 2nd ed. London: Gaskell; 2001. p. 200–24. Thompson S, Wordsworth S. An annotated cost questionnaire for completion by patients. HERU Discussion Paper 03/01. 2001. Pokhilenko I, Janssen LMM, Paulus ATG, Drost RMWA, Hollingworth W, et al. Development of an instrument for the assessment of health-related multi-sectoral resource use in Europe: the PECUNIA RUM. Appl Health Econ Health Policy. 2023. https://doi.org/10.1007/s40258-022-00780-7. Landfeldt E, Zethraeus N, Lindgren P. Standardized questionnaire for the measurement, valuation, and estimation of costs of informal care based on the opportunity cost and proxy good method. Appl Health Econ Health Policy. 2019;17(1):15–24. https://doi.org/10.1007/s40258-018-0418-2. Willis GB. Cognitive interviewing a tool for improving questionnaire design. California: Sage Publications; 2005.