{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,17]],"date-time":"2026-10-17T08:21:02Z","timestamp":1792225262302,"version":"4.4.0"},"reference-count":47,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2024,2,25]],"date-time":"2024-02-25T00:00:00Z","timestamp":1708819200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,2,25]],"date-time":"2024-02-25T00:00:00Z","timestamp":1708819200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2024,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Objective<\/jats:title>\n                <jats:p>Although decision scientists and health economists encourage inclusion of family member\/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures such those based on the EQ-5D. This study aims to predict EQ-5D-3L utility values from Family Reported Outcome Measure (FROM-16) scores, to allow the use of FROM-16 data in health economic evaluation when EQ-5D data is not available.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Data from 4228 family members\/partners of patients recruited to an online cross-sectional study through 58 UK-based patient support groups, three research support platforms and Welsh social services departments were randomly divided five times into two groups, to derive and test a mapping model. Split-half cross-validation was employed, resulting in a total of ten multinomial logistic regression models. The Monte Carlo simulation procedure was used to generate predicted EQ-5D-3L responses, and utility scores were calculated and compared against observed values. Mean error and mean absolute error were calculated for all ten validation models. The final model algorithm was derived using the entire sample.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>The model was highly predictive, and its repeated fitting using multinomial logistic regression demonstrated a stable model. The mean differences between predicted and observed health utility estimates ranged from 0.005 to 0.029 across the ten modelling exercises, with an average overall difference of 0.015 (a 2.2% overestimate, not of clinical importance).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>The algorithm developed will enable researchers and decision scientists to calculate EQ-5D health utility estimates from FROM-16 scores, thus allowing the inclusion of the family impact of disease in health economic evaluation of medical interventions when EQ-5D data is not available.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s11136-023-03590-z","type":"journal-article","created":{"date-parts":[[2024,2,25]],"date-time":"2024-02-25T14:01:30Z","timestamp":1708869690000},"page":"1107-1119","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values"],"prefix":"10.1007","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8158-712X","authenticated-orcid":false,"given":"R.","family":"Shah","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4612-5699","authenticated-orcid":false,"given":"M. S.","family":"Salek","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2143-1646","authenticated-orcid":false,"given":"A. Y.","family":"Finlay","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8968-0951","authenticated-orcid":false,"given":"R.","family":"Kay","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S. J.","family":"Nixon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7433-4383","authenticated-orcid":false,"given":"K.","family":"Otwombe","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4184-2023","authenticated-orcid":false,"given":"F. M.","family":"Ali","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5257-1142","authenticated-orcid":false,"given":"J. R.","family":"Ingram","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,2,25]]},"reference":[{"issue":"10","key":"3590_CR1","doi-asserted-by":"publisher","first-page":"1349","DOI":"10.1016\/j.jval.2020.05.017","volume":"23","author":"BM Pennington","year":"2020","unstructured":"Pennington, B. M. (2020). Inclusion of carer health-related quality of life in national institute for health and care excellence appraisals. Value Health, 23(10), 1349\u20131357. https:\/\/doi.org\/10.1016\/j.jval.2020.05.017","journal-title":"Value Health"},{"issue":"4","key":"3590_CR2","doi-asserted-by":"publisher","first-page":"451","DOI":"10.1007\/s40273-018-0730-6","volume":"37","author":"WBF Brouwer","year":"2019","unstructured":"Brouwer, W. B. F. (2019). The inclusion of spillover effects in economic evaluations: Not an optional extra. PharmacoEconomics, 37(4), 451\u2013456. https:\/\/doi.org\/10.1007\/s40273-018-0730-6","journal-title":"PharmacoEconomics"},{"key":"3590_CR3","doi-asserted-by":"publisher","first-page":"S330","DOI":"10.1016\/j.jval.2019.04.1613","volume":"22","author":"H Basarir","year":"2019","unstructured":"Basarir, H., Brockbank, J., Knight, C., & Wolowacz, S. (2019). PNS258 the inclusion of the utility values for carers and family members in HTAS: A case study of recent NICE appraisals in the UK. Value in Health, 22, S330. https:\/\/doi.org\/10.1016\/j.jval.2019.04.1613","journal-title":"Value in Health"},{"key":"3590_CR4","unstructured":"(ICER), I. f. C. a. E. R. (2019). Spinraza\u00ae and Zolgensma\u00ae for spinal muscular atrophy: Effectiveness and value: Final evidence report. Retrieved September 21, 2023, from https:\/\/icer.org\/wp-content\/uploads\/2020\/10\/ICER_SMA_Final_Evidence_Report_110220.pdf"},{"issue":"1","key":"3590_CR5","doi-asserted-by":"publisher","first-page":"5","DOI":"10.1007\/s40258-022-00755-8","volume":"21","author":"AA Leech","year":"2023","unstructured":"Leech, A. A., Lin, P. J., D\u2019Cruz, B., Parsons, S. K., & Lavelle, T. A. (2023). Family spillover effects: Are economic evaluations misrepresenting the value of healthcare interventions to society? Applied Health Economics and Health Policy, 21(1), 5\u201310. https:\/\/doi.org\/10.1007\/s40258-022-00755-8","journal-title":"Applied Health Economics and Health Policy"},{"issue":"1","key":"3590_CR6","doi-asserted-by":"publisher","first-page":"5","DOI":"10.1093\/bmb\/ldq033","volume":"96","author":"SJ Whitehead","year":"2010","unstructured":"Whitehead, S. J., & Ali, S. (2010). Health outcomes in economic evaluation: The QALY and utilities. British Medical Bulletin, 96(1), 5\u201321. https:\/\/doi.org\/10.1093\/bmb\/ldq033","journal-title":"British Medical Bulletin"},{"issue":"12","key":"3590_CR7","doi-asserted-by":"publisher","first-page":"1015","DOI":"10.2165\/11593940-000000000-00000","volume":"29","author":"H Al-Janabi","year":"2011","unstructured":"Al-Janabi, H., Flynn, T. N., & Coast, J. (2011). QALYs and carers. PharmacoEconomics, 29(12), 1015\u20131023. https:\/\/doi.org\/10.2165\/11593940-000000000-00000","journal-title":"PharmacoEconomics"},{"issue":"4","key":"3590_CR8","doi-asserted-by":"publisher","first-page":"469","DOI":"10.1007\/s40273-016-0477-x","volume":"35","author":"RJ Hoefman","year":"2017","unstructured":"Hoefman, R. J., van Exel, J., & Brouwer, W. B. F. (2017). Measuring care-related quality of life of caregivers for use in economic evaluations: CarerQol tariffs for Australia, Germany, Sweden, UK, and US. PharmacoEconomics, 35(4), 469\u2013478. https:\/\/doi.org\/10.1007\/s40273-016-0477-x","journal-title":"PharmacoEconomics"},{"issue":"3","key":"3590_CR9","doi-asserted-by":"publisher","first-page":"458","DOI":"10.1177\/0272989x10381280","volume":"31","author":"H Al-Janabi","year":"2011","unstructured":"Al-Janabi, H., Flynn, T. N., & Coast, J. (2011). Estimation of a preference-based carer experience scale. Medical Decision Making, 31(3), 458\u2013468. https:\/\/doi.org\/10.1177\/0272989x10381280","journal-title":"Medical Decision Making"},{"issue":"4","key":"3590_CR10","doi-asserted-by":"publisher","first-page":"475","DOI":"10.1007\/s40273-019-00768-7","volume":"37","author":"E Wittenberg","year":"2019","unstructured":"Wittenberg, E., James, L. P., & Prosser, L. A. (2019). Spillover effects on caregivers\u2019 and family members\u2019 utility: A systematic review of the literature. PharmacoEconomics, 37(4), 475\u2013499. https:\/\/doi.org\/10.1007\/s40273-019-00768-7","journal-title":"PharmacoEconomics"},{"issue":"6","key":"3590_CR11","doi-asserted-by":"publisher","first-page":"782","DOI":"10.1016\/j.jval.2020.01.015","volume":"23","author":"C McLoughlin","year":"2020","unstructured":"McLoughlin, C., Goranitis, I., & Al-Janabi, H. (2020). Validity and responsiveness of preference-based quality-of-life measures in informal carers: A comparison of 5 measures across 4 conditions. Value Health, 23(6), 782\u2013790. https:\/\/doi.org\/10.1016\/j.jval.2020.01.015","journal-title":"Value Health"},{"key":"3590_CR12","unstructured":"NICE (2020). CHTE-2020-Health-related quality. Task and finish group report. Retrieved October 8, 2023, from https:\/\/rees-france.com\/wp-content\/uploads\/2020\/12\/2020-CHTE-2020-Health-related-quality-of-life-.pdf"},{"issue":"1","key":"3590_CR13","doi-asserted-by":"publisher","first-page":"317","DOI":"10.1007\/s11136-013-0457-y","volume":"23","author":"CJ Golics","year":"2014","unstructured":"Golics, C. J., Basra, M. K., Finlay, A. Y., & Salek, S. (2014). The development and validation of the Family Reported Outcome Measure (FROM-16)\u00a9 to assess the impact of disease on the partner or family member. Quality of Life Research, 23(1), 317\u2013326. https:\/\/doi.org\/10.1007\/s11136-013-0457-y","journal-title":"Quality of Life Research"},{"issue":"1","key":"3590_CR14","doi-asserted-by":"publisher","first-page":"32","DOI":"10.1186\/s12955-019-1091-3","volume":"17","author":"P Chantarasap","year":"2019","unstructured":"Chantarasap, P., Johns, N. P., Pairojkul, S., Sookprasert, A., Wirasorn, K., Cheawchanwattana, A., Salek, S., & Subongkot, S. (2019). Validation of the Thai version of the family reported outcome measure (FROM-16)\u00a9 to assess the impact of disease on the partner or family members of patients with cancer. Health and Quality of Life Outcomes, 17(1), 32. https:\/\/doi.org\/10.1186\/s12955-019-1091-3","journal-title":"Health and Quality of Life Outcomes"},{"issue":"14","key":"3590_CR15","doi-asserted-by":"publisher","first-page":"adv00219","DOI":"10.2340\/00015555-3583","volume":"100","author":"E W\u00f3jcik","year":"2020","unstructured":"W\u00f3jcik, E., Reszke, R., Otlewska, A., Matusiak, \u0141, Ali, F., Finlay, A., & Szepietowski, J. (2020). Family Reported Outcome Measure\u201416 (FROM-16): Creation, reliability and reproducibility of the Polish language version. Acta Dermato Venereologica, 100(14), adv00219. https:\/\/doi.org\/10.2340\/00015555-3583","journal-title":"Acta Dermato Venereologica"},{"issue":"6","key":"3590_CR16","doi-asserted-by":"publisher","first-page":"256","DOI":"10.1097\/jnn.0000000000000619","volume":"53","author":"HY Oh","year":"2021","unstructured":"Oh, H. Y., & Shin, Y. S. (2021). Psychometric properties of the Korean family reported outcome measure for family members of patients with acquired brain injury. Journal of Neuroscience Nursing, 53(6), 256\u2013261. https:\/\/doi.org\/10.1097\/jnn.0000000000000619","journal-title":"Journal of Neuroscience Nursing"},{"key":"3590_CR17","unstructured":"Family Reported Outcome Measure (FROM-16). (2014). School of Medicine, Cardiff University. Retrieved August 8, 2022, from https:\/\/www.cardiff.ac.uk\/medicine\/resources\/quality-of-life-questionnaires\/family-reported-outcome-measure"},{"issue":"3","key":"3590_CR18","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2022-066168","volume":"13","author":"R Shah","year":"2023","unstructured":"Shah, R., Finlay, A. Y., Salek, S. M., Nixon, S. J., Otwombe, K., Ali, F. M., & Ingram, J. R. (2023). Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: A cross-sectional online study in the UK. British Medical Journal Open, 13(3). https:\/\/doi.org\/10.1136\/bmjopen-2022-066168","journal-title":"British Medical Journal Open"},{"issue":"1","key":"3590_CR19","doi-asserted-by":"publisher","first-page":"18","DOI":"10.1177\/0272989x05284108","volume":"26","author":"AM Gray","year":"2006","unstructured":"Gray, A. M., Rivero-Arias, O., & Clarke, P. M. (2006). Estimating the association between SF-12 responses and EQ-5D utility values by response mapping. Medical Decision Making, 26(1), 18\u201329. https:\/\/doi.org\/10.1177\/0272989x05284108","journal-title":"Medical Decision Making"},{"issue":"1","key":"3590_CR20","doi-asserted-by":"publisher","first-page":"265","DOI":"10.1007\/s11136-019-02303-9","volume":"29","author":"A Kiadaliri","year":"2020","unstructured":"Kiadaliri, A., Alava, M. H., Roos, E. M., & Englund, M. (2020). Mapping EQ-5D-3L from the knee injury and osteoarthritis outcome score (KOOS). Quality of Life Research, 29(1), 265\u2013274. https:\/\/doi.org\/10.1007\/s11136-019-02303-9","journal-title":"Quality of Life Research"},{"issue":"1","key":"3590_CR21","doi-asserted-by":"publisher","first-page":"1237","DOI":"10.1186\/s12885-021-08964-5","volume":"21","author":"LA Gray","year":"2021","unstructured":"Gray, L. A., Hernandez Alava, M., & Wailoo, A. J. (2021). Mapping the EORTC QLQ-C30 to EQ-5D-3L in patients with breast cancer. BMC Cancer, 21(1), 1237. https:\/\/doi.org\/10.1186\/s12885-021-08964-5","journal-title":"BMC Cancer"},{"issue":"12","key":"3590_CR22","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2019-031705","volume":"9","author":"L Hurt","year":"2019","unstructured":"Hurt, L., Ashfield-Watt, P., Townson, J., Heslop, L., Copeland, L., Atkinson, M. D., Horton, J., & Paranjothy, S. (2019). Cohort profile: HealthWise Wales. A research register and population health data platform with linkage to National Health Service data sets in Wales. British Medical Journal Open, 9(12). https:\/\/doi.org\/10.1136\/bmjopen-2019-031705","journal-title":"British Medical Journal Open"},{"issue":"2","key":"3590_CR23","doi-asserted-by":"publisher","first-page":"141","DOI":"10.1002\/(sici)1099-1050(199603)5:2<141::Aid-hec189>3.0.Co;2-n","volume":"5","author":"P Dolan","year":"1996","unstructured":"Dolan, P., Gudex, C., Kind, P., & Williams, A. (1996). The time trade-off method: Results from a general population study. Health Economics, 5(2), 141\u2013154. https:\/\/doi.org\/10.1002\/(sici)1099-1050(199603)5:2%3c141::Aid-hec189>3.0.Co;2-n","journal-title":"Health Economics"},{"key":"3590_CR24","doi-asserted-by":"publisher","DOI":"10.4135\/9781506326139","volume-title":"The SAGE encyclopedia of educational research, measurement, and evaluation","author":"ML McHugh","year":"2018","unstructured":"McHugh, M. L. (2018). The SAGE encyclopedia of educational research, measurement, and evaluation. SAGE Publications Inc. https:\/\/doi.org\/10.4135\/9781506326139"},{"issue":"11","key":"3590_CR25","doi-asserted-by":"publisher","first-page":"3025","DOI":"10.1007\/s11136-017-1607-4","volume":"26","author":"FM Ali","year":"2017","unstructured":"Ali, F. M., Kay, R., Finlay, A. Y., Piguet, V., Kupfer, J., Dalgard, F., & Sam Salek, M. (2017). Mapping of the DLQI scores to EQ-5D utility values using ordinal logistic regression. Quality of Life Research, 26(11), 3025\u20133034. https:\/\/doi.org\/10.1007\/s11136-017-1607-4","journal-title":"Quality of Life Research"},{"issue":"1","key":"3590_CR26","doi-asserted-by":"publisher","first-page":"202","DOI":"10.1016\/j.jval.2012.10.010","volume":"16","author":"L Longworth","year":"2013","unstructured":"Longworth, L., & Rowen, D. (2013). Mapping to obtain EQ-5D utility values for use in NICE health technology assessments. Value Health, 16(1), 202\u2013210. https:\/\/doi.org\/10.1016\/j.jval.2012.10.010","journal-title":"Value Health"},{"issue":"1","key":"3590_CR27","doi-asserted-by":"publisher","first-page":"67","DOI":"10.4103\/aca.ACA_157_18","volume":"22","author":"P Mishra","year":"2019","unstructured":"Mishra, P., Pandey, C. M., Singh, U., Gupta, A., Sahu, C., & Keshri, A. (2019). Descriptive statistics and normality tests for statistical data. Annals of Cardiac Anaesthesia, 22(1), 67\u201372. https:\/\/doi.org\/10.4103\/aca.ACA_157_18","journal-title":"Annals of Cardiac Anaesthesia"},{"issue":"2","key":"3590_CR28","doi-asserted-by":"publisher","first-page":"221","DOI":"10.1586\/14737167.2014.894462","volume":"14","author":"S Coretti","year":"2014","unstructured":"Coretti, S., Ruggeri, M., & McNamee, P. (2014). The minimum clinically important difference for EQ-5D index: A critical review. Expert Review of Pharmacoeconomics & Outcomes Research, 14(2), 221\u2013233. https:\/\/doi.org\/10.1586\/14737167.2014.894462","journal-title":"Expert Review of Pharmacoeconomics & Outcomes Research"},{"issue":"2","key":"3590_CR29","doi-asserted-by":"publisher","first-page":"215","DOI":"10.1007\/s10198-009-0168-z","volume":"11","author":"JE Brazier","year":"2010","unstructured":"Brazier, J. E., Yang, Y., Tsuchiya, A., & Rowen, D. L. (2010). A review of studies mapping (or cross walking) non-preference based measures of health to generic preference-based measures. The European Journal of Health Economics, 11(2), 215\u2013225. https:\/\/doi.org\/10.1007\/s10198-009-0168-z","journal-title":"The European Journal of Health Economics"},{"issue":"5","key":"3590_CR30","doi-asserted-by":"publisher","first-page":"451","DOI":"10.1097\/MLR.0b013e318207e9a8","volume":"49","author":"QA Le","year":"2011","unstructured":"Le, Q. A., & Doctor, J. N. (2011). Probabilistic mapping of descriptive health status responses onto health state utilities using Bayesian networks: An empirical analysis converting SF-12 into EQ-5D utility index in a national US sample. Medical Care, 49(5), 451\u2013460. https:\/\/doi.org\/10.1097\/MLR.0b013e318207e9a8","journal-title":"Medical Care"},{"key":"3590_CR31","unstructured":"Foley, N., Powell, A., Clark, H., Brione , P., Kennedy, S., Powell, T., Roberts, N., Harker, R., Francis-Devine, B., & Foster, D. (2022). Informal carers research briefings.files.parliament.uk. [Online] Retrieved March 8, 2023, from https:\/\/researchbriefings.files.parliament.uk\/documents\/CBP-7756\/CBP-7756.pdf"},{"key":"3590_CR32","doi-asserted-by":"publisher","DOI":"10.1007\/s12529-022-10104-7","author":"AM Snyder","year":"2022","unstructured":"Snyder, A. M., Brandenberger, A. U., Taliercio, V. L., Rich, B. E., Webber, L. B., Beshay, A. P., Biber, J. E., Hess, R., Rhoads, J. L. W., & Secrest, A. M. (2022). Quality of life among family of patients with atopic dermatitis and psoriasis. International Journal of Behavioral Medicine. https:\/\/doi.org\/10.1007\/s12529-022-10104-7","journal-title":"International Journal of Behavioral Medicine"},{"issue":"1","key":"3590_CR33","doi-asserted-by":"publisher","first-page":"194","DOI":"10.1186\/s12955-021-01819-4","volume":"19","author":"R Shah","year":"2021","unstructured":"Shah, R., Ali, F. M., Finlay, A. Y., & Salek, M. S. (2021). Family reported outcomes, an unmet need in the management of a patient\u2019s disease: Appraisal of the literature. Health and Quality of Life Outcomes, 19(1), 194. https:\/\/doi.org\/10.1186\/s12955-021-01819-4","journal-title":"Health and Quality of Life Outcomes"},{"issue":"11","key":"3590_CR34","doi-asserted-by":"publisher","first-page":"vc05","DOI":"10.7860\/jcdr\/2016\/19671.8792","volume":"10","author":"F Noghani","year":"2016","unstructured":"Noghani, F., Seyedfatemi, N., Karimirad, M. R., Akbarzadeh, A., & Hasanpour-Dehkordi, A. (2016). Health related quality of life in family caregivers of patients suffering from mental disorders. Journal of Clinical and Diagnostic Research, 10(11), vc05\u2013vc09. https:\/\/doi.org\/10.7860\/jcdr\/2016\/19671.8792","journal-title":"Journal of Clinical and Diagnostic Research"},{"key":"3590_CR35","doi-asserted-by":"publisher","first-page":"787","DOI":"10.2147\/ijgm.S45156","volume":"6","author":"CJ Golics","year":"2013","unstructured":"Golics, C. J., Basra, M. K., Salek, M. S., & Finlay, A. Y. (2013). The impact of patients\u2019 chronic disease on family quality of life: An experience from 26 specialties. International Journal of General Medicine, 6, 787\u2013798. https:\/\/doi.org\/10.2147\/ijgm.S45156","journal-title":"International Journal of General Medicine"},{"issue":"2","key":"3590_CR36","doi-asserted-by":"publisher","first-page":"123","DOI":"10.1007\/s40273-014-0218-y","volume":"33","author":"M Krol","year":"2015","unstructured":"Krol, M., Papenburg, J., & van Exel, J. (2015). Does including informal care in economic evaluations matter? A systematic review of inclusion and impact of informal care in cost-effectiveness studies. PharmacoEconomics, 33(2), 123\u2013135. https:\/\/doi.org\/10.1007\/s40273-014-0218-y","journal-title":"PharmacoEconomics"},{"key":"3590_CR37","unstructured":"Kind, P., Hardman, G., & Macran, S. (1999). UK population norms for EQ-5D. Centre for Health Economics, University of York, Working Papers."},{"key":"3590_CR38","unstructured":"Mott, D. (2022). Including carer quality of life in health technology evaluation: are we there yet?. Retrieved July 31, 2022, from https:\/\/www.ohe.org\/insight\/including-carer-quality-life-health-technology-evaluation-are-we-there-yet\/"},{"issue":"3","key":"3590_CR39","doi-asserted-by":"publisher","first-page":"341","DOI":"10.1177\/0272989x09349961","volume":"30","author":"O Rivero-Arias","year":"2010","unstructured":"Rivero-Arias, O., Ouellet, M., Gray, A., Wolstenholme, J., Rothwell, P. M., & Luengo-Fernandez, R. (2010). Mapping the modified Rankin scale (mRS) measurement into the generic EuroQol (EQ-5D) health outcome. Medical Decision Making, 30(3), 341\u2013354. https:\/\/doi.org\/10.1177\/0272989x09349961","journal-title":"Medical Decision Making"},{"key":"3590_CR40","unstructured":"Longworth L, R. D. (2011). NICE DSU technical support document 10: the use of mapping methods to estimate health state utility values report by the decision support unit. . (pp. 18): Sheffield: Decision Support Unit, ScHARR, University of Sheffield."},{"key":"3590_CR41","doi-asserted-by":"crossref","unstructured":"Shah, R., Finlay, A.Y, Salek., S.M., Nixon, S.J., Otwombe, K., Ali, F.M., Ingram, J.R (2023). Responsiveness to Change of the Family Reported Outcome Measure (FROM-16). Poster presented at: ISOQOL 30th Annual Conference; 18\u201321 October, 2023; Calgary, Alberta, Canada.","DOI":"10.1186\/s41687-024-00703-1"},{"issue":"8","key":"3590_CR42","doi-asserted-by":"publisher","first-page":"643","DOI":"10.1007\/s40273-013-0069-y","volume":"31","author":"B Kearns","year":"2013","unstructured":"Kearns, B., Ara, R., Wailoo, A., Manca, A., Alava, M. H., Abrams, K., & Campbell, M. (2013). Good practice guidelines for the use of statistical regression models in economic evaluations. PharmacoEconomics, 31(8), 643\u2013652. https:\/\/doi.org\/10.1007\/s40273-013-0069-y","journal-title":"PharmacoEconomics"},{"issue":"5","key":"3590_CR43","doi-asserted-by":"publisher","first-page":"735","DOI":"10.1007\/s10198-021-01287-z","volume":"22","author":"AA Shafie","year":"2021","unstructured":"Shafie, A. A., Chhabra, I. K., Wong, J. H. Y., & Mohammed, N. S. (2021). Mapping PedsQL\u2122 Generic Core Scales to EQ-5D-3L utility scores in transfusion-dependent thalassemia patients. The European Journal of Health Economics, 22(5), 735\u2013747. https:\/\/doi.org\/10.1007\/s10198-021-01287-z","journal-title":"The European Journal of Health Economics"},{"issue":"4","key":"3590_CR44","doi-asserted-by":"publisher","first-page":"469","DOI":"10.1016\/j.jval.2016.01.005","volume":"19","author":"CK Hoyle","year":"2016","unstructured":"Hoyle, C. K., Tabberer, M., & Brooks, J. (2016). Mapping the COPD assessment test onto EQ-5D. Value Health, 19(4), 469\u2013477. https:\/\/doi.org\/10.1016\/j.jval.2016.01.005","journal-title":"Value Health"},{"key":"3590_CR45","doi-asserted-by":"publisher","first-page":"33","DOI":"10.1016\/j.vhri.2020.02.001","volume":"24","author":"L Luan","year":"2021","unstructured":"Luan, L., Hu, H., & Li, S.-C. (2021). Mapping utility scores from the HeartQoL questionnaire into the EQ-5D for ischemic heart disease. Value in Health Regional Issues, 24, 33\u201337. https:\/\/doi.org\/10.1016\/j.vhri.2020.02.001","journal-title":"Value in Health Regional Issues"},{"issue":"7","key":"3590_CR46","doi-asserted-by":"publisher","first-page":"2167","DOI":"10.1007\/s11136-022-03101-6","volume":"31","author":"D Dawoud","year":"2022","unstructured":"Dawoud, D., Lamb, A., Moore, A., Bregman, C., Rupniewska, E., Paling, T., Wolfram, V., Lovett, R. E. S., & Dent, R. (2022). Capturing what matters: Updating NICE methods guidance on measuring and valuing health. Quality of Life Research, 31(7), 2167\u20132173. https:\/\/doi.org\/10.1007\/s11136-022-03101-6","journal-title":"Quality of Life Research"},{"issue":"3","key":"3590_CR47","doi-asserted-by":"publisher","first-page":"146","DOI":"10.12968\/bjcn.2011.16.3.146","volume":"16","author":"KA Meadows","year":"2011","unstructured":"Meadows, K. A. (2011). Patient-reported outcome measures: An overview. British Journal of Community Nursing, 16(3), 146\u2013151. https:\/\/doi.org\/10.12968\/bjcn.2011.16.3.146","journal-title":"British Journal of Community Nursing"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-023-03590-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11136-023-03590-z\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-023-03590-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,3,27]],"date-time":"2024-03-27T18:21:18Z","timestamp":1711563678000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11136-023-03590-z"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,2,25]]},"references-count":47,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2024,4]]}},"alternative-id":["3590"],"URL":"https:\/\/doi.org\/10.1007\/s11136-023-03590-z","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"value":"0962-9343","type":"print"},{"value":"1573-2649","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,2,25]]},"assertion":[{"value":"17 December 2023","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 February 2024","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"RS, KO, RK and SJN declared no competing interest; FMA is employed by Cardiff University: Cardiff University receives royalties from some uses of FROM-16; AYF reports personal fees from Novartis Lecture honorarium, personal fees from Medscape Podcast honorarium, personal fees from Eli Lilly Lecture honorarium, outside the submitted work; MSS and AYF are joint copyright owner of the FROM-16 for which Cardiff University receives royalties for its commercial use, and they receive a share under standard university policy. JRI receives a stipend as Editor-in-Chief of the British Journal of Dermatology and an authorship honorarium from UpToDate. He is a consultant for Abbvie, Boehringer Ingelheim, ChemoCentryx, Citryll, Novartis and UCB Pharma and has served on advisory boards for Insmed, Kymera Therapeutics and Viela Bio. He is co-copyright holder of HiSQOL, Investigator Global Assessment and Patient Global Assessment instruments for HS. His department receives income from royalties  for the use of the Dermatology Life Quality Index (DLQI), Family Reported Outcome Measure (FROM-16) and related instruments.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"All participants gave informed electronic consent to participate in the study.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Ethics approval was granted by the Cardiff University School of Medicine Research Ethics Committee (SREC: 21\/19).","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"No details of individual participants are described in this paper.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}]}}