{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,3]],"date-time":"2026-09-03T21:40:06Z","timestamp":1788471606951,"version":"build-2803163510"},"reference-count":49,"publisher":"Springer Science and Business Media LLC","issue":"10","license":[{"start":{"date-parts":[[2025,6,25]],"date-time":"2025-06-25T00:00:00Z","timestamp":1750809600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,6,25]],"date-time":"2025-06-25T00:00:00Z","timestamp":1750809600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["NIHR301648"],"award-info":[{"award-number":["NIHR301648"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2025,10]]},"abstract":"<jats:title>Abstract<\/jats:title>\n          <jats:sec>\n            <jats:title>Purpose<\/jats:title>\n            <jats:p>Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative condition with swift progression. The devastating impact of ALS affects the health-related quality of life (HRQoL) of informal carers. Various person reported outcome measures (PROMs) have been used to assess HRQoL in informal carers in ALS, yet their validity remains unclear. This review aimed to identify and evaluate the content validity of HRQoL PROMs for informal carers in ALS.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Methods<\/jats:title>\n            <jats:p>This review was conducted according to best practice COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. Two literature searches were conducted in November 2023 and April 2024 across MEDLINE, PsycINFO, Embase, CINAHL, the Cochrane Database of Systematic Reviews, CENTRAL and Google Scholar, to identify HRQoL PROMs used with informal carers in ALS, PROM development articles, and psychometric literature. Evidence synthesis followed COSMIN guidance.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Results<\/jats:title>\n            <jats:p>12,276 articles were screened, and 109 PROMs were identified, with 43 undergoing full COSMIN assessment. Content validity ratings were \u2018<jats:italic>Inconsistent<\/jats:italic>\u2019 or \u2018<jats:italic>Insufficient<\/jats:italic>\u2019 for all PROMs. All PROMs, except the CarerQoL, were rated \u2018<jats:italic>Insufficient<\/jats:italic>\u2019 for comprehensiveness. Only 18.6% of PROMs included informal carers in development. Quality of evidence supporting content validity ratings was \u2018<jats:italic>Very Low<\/jats:italic>\u2019 for 93% of PROMs.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Conclusion<\/jats:title>\n            <jats:p>HRQoL PROMs used with informal carers in ALS lack evidence to support their content validity, restricting their utility for this purpose. Existing literature on the impact of caring in ALS on informal carers\u2019 HRQoL should be interpreted cautiously. Further research is required to establish the content validity of HRQoL PROMs used for this cohort.<\/jats:p>\n          <\/jats:sec>","DOI":"10.1007\/s11136-025-04012-y","type":"journal-article","created":{"date-parts":[[2025,6,25]],"date-time":"2025-06-25T07:49:22Z","timestamp":1750837762000},"page":"2731-2744","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Health-related quality of life of informal carers in ALS: a systematic review of person reported outcome measures"],"prefix":"10.1007","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0009-0006-1615-1817","authenticated-orcid":false,"given":"Rosie","family":"Bamber","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3535-7822","authenticated-orcid":false,"given":"Theocharis","family":"Stavroulakis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1269-9053","authenticated-orcid":false,"given":"Christopher","family":"McDermott","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9373-7663","authenticated-orcid":false,"given":"Jill","family":"Carlton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,6,25]]},"reference":[{"key":"4012_CR1","doi-asserted-by":"publisher","first-page":"17071","DOI":"10.1038\/nrdp.2017.71","volume":"5","author":"O Hardiman","year":"2017","unstructured":"Hardiman, O., Al-Chalabi, A., Chio, A., et al. (2017). Amyotrophic lateral sclerosis. Nat Rev Dis Primers Oct, 5, 3:17071. https:\/\/doi.org\/10.1038\/nrdp.2017.71","journal-title":"Nat Rev Dis Primers Oct"},{"issue":"9","key":"4012_CR2","doi-asserted-by":"publisher","first-page":"526","DOI":"10.1038\/nrneurol.2016.111","volume":"12","author":"EV Hobson","year":"2016","unstructured":"Hobson, E. V., & McDermott, C. J. (2016). Supportive and symptomatic management of amyotrophic lateral sclerosis. Nat Rev Neurol Sep, 12(9), 526\u2013538. https:\/\/doi.org\/10.1038\/nrneurol.2016.111","journal-title":"Nat Rev Neurol Sep"},{"issue":"5\u20136","key":"4012_CR3","doi-asserted-by":"publisher","first-page":"310","DOI":"10.3109\/17482960802566824","volume":"10","author":"A Chi\u00f2","year":"2009","unstructured":"Chi\u00f2, A., Logroscino, G., Hardiman, O., et al. (2009). Prognostic factors in ALS: A critical review. Amyotroph Lateral Scler Oct-Dec, 10(5\u20136), 310\u2013323. https:\/\/doi.org\/10.3109\/17482960802566824","journal-title":"Amyotroph Lateral Scler Oct-Dec"},{"issue":"1","key":"4012_CR4","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1093\/ije\/dyw061","volume":"1","author":"B Marin","year":"2017","unstructured":"Marin, B., Boum\u00e9diene, F., Logroscino, G., et al. (2017). Variation in worldwide incidence of amyotrophic lateral sclerosis: A meta-analysis. Int J Epidemiol Feb, 1(1), 57\u201374. https:\/\/doi.org\/10.1093\/ije\/dyw061","journal-title":"Int J Epidemiol Feb"},{"key":"4012_CR5","doi-asserted-by":"publisher","unstructured":"Abrahams, S. (2023). Neuropsychological impairment in amyotrophic lateral sclerosis\u2013frontotemporal spectrum disorder. Nature Reviews Neurology. \/11\/01 2023;19(11):655\u2013667. https:\/\/doi.org\/10.1038\/s41582-023-00878-z","DOI":"10.1038\/s41582-023-00878-z"},{"key":"4012_CR6","doi-asserted-by":"publisher","unstructured":"Schischlevskij, P., Cordts, I., G\u00fcnther, R., et al. (2021). Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers\u2019 Lives. Brain Sci Jun, 4(6). https:\/\/doi.org\/10.3390\/brainsci11060748","DOI":"10.3390\/brainsci11060748"},{"key":"4012_CR7","doi-asserted-by":"publisher","first-page":"350","DOI":"10.1186\/s12913-015-1010-1","volume":"28","author":"LA Mitchell","year":"2015","unstructured":"Mitchell, L. A., Hirdes, J., Poss, J. W., Slegers-Boyd, C., Caldarelli, H., & Martin, L. (2015). Informal caregivers of clients with neurological conditions: Profiles, patterns and risk factors for distress from a home care prevalence study. BMC Health Serv Res Aug, 28, 15:350. https:\/\/doi.org\/10.1186\/s12913-015-1010-1","journal-title":"BMC Health Serv Res Aug"},{"issue":"2","key":"4012_CR8","doi-asserted-by":"publisher","first-page":"223","DOI":"10.3109\/17482968.2011.649759","volume":"13","author":"M Peters","year":"2012","unstructured":"Peters, M., Fitzpatrick, R., Doll, H., Playford, E. D., & Jenkinson, C. (2012). The impact of perceived lack of support provided by health and social care services to caregivers of people with motor neuron disease. Amyotroph Lateral Scler Feb, 13(2), 223\u2013228. https:\/\/doi.org\/10.3109\/17482968.2011.649759","journal-title":"Amyotroph Lateral Scler Feb"},{"key":"4012_CR9","doi-asserted-by":"publisher","unstructured":"de Wit, J., Bakker, L. A., van Groenestijn, A. C., et al. (Jan 2018). Caregiver burden in amyotrophic lateral sclerosis: A systematic review. Palliative Medicine, 32(1), 231\u2013245. https:\/\/doi.org\/10.1177\/0269216317709965","DOI":"10.1177\/0269216317709965"},{"issue":"1","key":"4012_CR10","doi-asserted-by":"publisher","first-page":"56","DOI":"10.20344\/amp.6590","volume":"29","author":"AC Pinho","year":"2016","unstructured":"Pinho, A. C., & Gon\u00e7alves, E. (2016). Are amyotrophic lateral sclerosis caregivers at higher risk for health problems?? Acta Med Port Jan, 29(1), 56\u201362. https:\/\/doi.org\/10.20344\/amp.6590","journal-title":"Acta Med Port Jan"},{"issue":"1","key":"4012_CR11","doi-asserted-by":"publisher","first-page":"33","DOI":"10.1017\/S1478951505050054","volume":"3","author":"A Love","year":"2005","unstructured":"Love, A., Street, A., Harris, R., & Lowe, R. (2005). Social aspects of caregiving for people living with motor neurone disease: Their relationships to carer well-being. Palliative & Supportive Care Mar, 3(1), 33\u201338.","journal-title":"Palliative & Supportive Care Mar"},{"issue":"4","key":"4012_CR12","doi-asserted-by":"publisher","first-page":"181","DOI":"10.1080\/14660820152882188","volume":"2","author":"J Martin","year":"2001","unstructured":"Martin, J., & Turnbull, J. (2001). Lasting impact in families after death from ALS. Amyotroph Lateral Scler Other Motor Neuron Disord Dec, 2(4), 181\u2013187. https:\/\/doi.org\/10.1080\/14660820152882188","journal-title":"Amyotroph Lateral Scler Other Motor Neuron Disord Dec"},{"key":"4012_CR13","doi-asserted-by":"crossref","unstructured":"Hays, R. D., & Reeve, B. B. (2008). Measurement and modeling of Health-Related quality of life. In H. K. Heggenhougen (Ed.), International encyclopedia of public health (pp. 241\u2013252). Academic.","DOI":"10.1016\/B978-012373960-5.00336-1"},{"issue":"5","key":"4012_CR14","doi-asserted-by":"publisher","first-page":"279","DOI":"10.1080\/17482960801934148","volume":"9","author":"MT Williams","year":"2008","unstructured":"Williams, M. T., Donnelly, J. P., Holmlund, T., & Battaglia, M. (2008). ALS: Family caregiver needs and quality of life. Amyotroph Lateral Scler Oct, 9(5), 279\u2013286. https:\/\/doi.org\/10.1080\/17482960801934148","journal-title":"Amyotroph Lateral Scler Oct"},{"issue":"23\u201324","key":"4012_CR15","doi-asserted-by":"publisher","first-page":"4321","DOI":"10.1111\/jocn.14593","volume":"27","author":"P Sandstedt","year":"2018","unstructured":"Sandstedt, P., Littorin, S., Cr\u00f6de Widsell, G., et al. (2018). Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study. J Clin Nurs Dec, 27(23\u201324), 4321\u20134330. https:\/\/doi.org\/10.1111\/jocn.14593","journal-title":"J Clin Nurs Dec"},{"issue":"10","key":"4012_CR16","doi-asserted-by":"publisher","first-page":"1727","DOI":"10.1007\/s11136-011-9903-x","volume":"20","author":"M Herdman","year":"2011","unstructured":"Herdman, M., Gudex, C., Lloyd, A., et al. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research Dec, 20(10), 1727\u20131736. https:\/\/doi.org\/10.1007\/s11136-011-9903-x","journal-title":"Quality of Life Research Dec"},{"issue":"1\u20132","key":"4012_CR17","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1016\/s0022-510x(99)00210-5","volume":"31","author":"JM Cedarbaum","year":"1999","unstructured":"Cedarbaum, J. M., Stambler, N., Malta, E., et al. (1999). The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS study group (Phase III). J Neurol Sci Oct, 31(1\u20132), 13\u201321. https:\/\/doi.org\/10.1016\/s0022-510x(99)00210-5","journal-title":"J Neurol Sci Oct"},{"key":"4012_CR18","doi-asserted-by":"publisher","first-page":"1005","DOI":"10.1007\/s11136-005-5994-6","volume":"15","author":"W Brouwer","year":"2006","unstructured":"Brouwer, W., Van Exel, N., Van Gorp, B., & Redekop, W. (2006). The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15, 1005\u20131021.","journal-title":"Quality of Life Research"},{"issue":"6","key":"4012_CR19","doi-asserted-by":"publisher","first-page":"473","DOI":"10.1097\/00005650-199206000-00002","volume":"30","author":"JE Ware Jr","year":"1992","unstructured":"Ware, J. E. Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care Jun, 30(6), 473\u2013483.","journal-title":"Med Care Jun"},{"issue":"3\u20134","key":"4012_CR20","doi-asserted-by":"publisher","first-page":"317","DOI":"10.1080\/21678421.2022.2126322","volume":"24","author":"A Maksymowicz-\u015aliwi\u0144ska","year":"2023","unstructured":"Maksymowicz-\u015aliwi\u0144ska, A., Lul\u00e9, D., Niepor\u0118cki, K., Cie\u0107wierska, K., Ludolph, A. C., & Ku\u017ama-Kozakiewicz, M. (2023). The quality of life and depression in primary caregivers of patients with amyotrophic lateral sclerosis is affected by patient-related and culture-specific conditions. Amyotroph Lateral Scler Frontotemporal Degener May, 24(3\u20134), 317\u2013326. https:\/\/doi.org\/10.1080\/21678421.2022.2126322","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener May"},{"key":"4012_CR21","doi-asserted-by":"publisher","unstructured":"Mokkink, L. B., Terwee, C. B., Patrick, D. L. (2010). The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. Journal of Clinical Epidemiology. 2010;63(7):737\u2013745. https:\/\/doi.org\/10.1016\/j.jclinepi.2010.02.006.","DOI":"10.1016\/j.jclinepi.2010.02.006"},{"key":"4012_CR22","unstructured":"Terwee, C. B., Prinsen, C. A. C., Chiarotto, A. COSMIN methodology for assessing the content validity of PROMs\u2013user manual. https:\/\/www.cosmin.nl\/wp-content\/uploads\/COSMIN-methodology-for-content-validity-user-manual-v1.pdf"},{"issue":"5","key":"4012_CR23","doi-asserted-by":"publisher","first-page":"1147","DOI":"10.1007\/s11136-018-1798-3","volume":"27","author":"CAC Prinsen","year":"2018","unstructured":"Prinsen, C. A. C., Mokkink, L. B., Bouter, L. M., et al. (2018). COSMIN guideline for systematic reviews of patient-reported outcome measures. Quality of Life Research May, 27(5), 1147\u20131157. https:\/\/doi.org\/10.1007\/s11136-018-1798-3","journal-title":"Quality of Life Research May"},{"issue":"23","key":"4012_CR24","doi-asserted-by":"publisher","first-page":"1096","DOI":"10.1212\/wnl.0000000000007618","volume":"4","author":"E Nobels-Janssen","year":"2019","unstructured":"Nobels-Janssen, E., van der Wees, P. J., Verhagen, W. I. M., Westert, G. P., Bartels, R., & Boogaarts, J. D. (2019). Patient-reported outcome measures in subarachnoid hemorrhage: A systematic review. Neurology Jun, 4(23), 1096\u20131112. https:\/\/doi.org\/10.1212\/wnl.0000000000007618","journal-title":"Neurology Jun"},{"issue":"10","key":"4012_CR25","doi-asserted-by":"publisher","first-page":"1034","DOI":"10.1212\/wnl.0000000000001336","volume":"10","author":"CM Bann","year":"2015","unstructured":"Bann, C. M., Abresch, R. T., Biesecker, B., et al. (2015). Measuring quality of life in muscular dystrophy. Neurology Mar, 10(10), 1034\u20131042. https:\/\/doi.org\/10.1212\/wnl.0000000000001336","journal-title":"Neurology Mar"},{"key":"4012_CR26","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-024-03634-y","author":"EBM Elsman","year":"2024","unstructured":"Elsman, E. B. M., Mokkink, L. B., Terwee, C. B., et al. (2024). Guideline for reporting systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN for omis 2024. Quality of Life Researchhttps:\/\/doi.org\/10.1007\/s11136-024-03634-y","journal-title":"Quality of Life Research"},{"key":"4012_CR27","unstructured":"PROSPERO (2023). Measuring the health-related quality of life of informal carers in motor neuron disease: A systematic review of the content validity of self-reported outcome measures using COSMIN. https:\/\/www.crd.york.ac.uk\/prospero\/display_record.php?ID=CRD42023484037"},{"issue":"1","key":"4012_CR28","doi-asserted-by":"publisher","first-page":"245","DOI":"10.1186\/s13643-017-0644-y","volume":"6","author":"WM Bramer","year":"2017","unstructured":"Bramer, W. M., Rethlefsen, M. L., Kleijnen, J., & Franco, O. H. (2017). Optimal database combinations for literature searches in systematic reviews: A prospective exploratory study. Syst Rev Dec, 6(1), 245. https:\/\/doi.org\/10.1186\/s13643-017-0644-y","journal-title":"Syst Rev Dec"},{"key":"4012_CR29","unstructured":"Mackintosh, A. C., Hadi, C., Gibbons, M., & Fitzpatrick, E. Ray. PROM Group Construct and Instrument Type Filters. https:\/\/cosmin.nl\/wp-content\/uploads\/prom-search-filter-oxford-2010.pdf"},{"issue":"8","key":"4012_CR30","doi-asserted-by":"publisher","first-page":"1115","DOI":"10.1007\/s11136-009-9528-5","volume":"10","author":"CB Terwee","year":"2009","unstructured":"Terwee, C. B., Jansma, E. P., Riphagen, I. I., & de Vet, H. C. W. (2009). Development of a methodological pubmed search filter for finding studies on measurement properties of measurement instruments. Quality of Life Research, 10(8), 1115\u20131123. https:\/\/doi.org\/10.1007\/s11136-009-9528-5. \/01 2009.","journal-title":"Quality of Life Research"},{"issue":"1","key":"4012_CR31","doi-asserted-by":"publisher","first-page":"263","DOI":"10.1186\/s12955-020-01511-z","volume":"3","author":"PA Powell","year":"2020","unstructured":"Powell, P. A., Carlton, J., Woods, H. B., & Mazzone, P. (2020). Measuring quality of life in Duchenne muscular dystrophy: A systematic review of the content and structural validity of commonly used instruments. Health Qual Life Outcomes Aug, 3(1), 263. https:\/\/doi.org\/10.1186\/s12955-020-01511-z","journal-title":"Health Qual Life Outcomes Aug"},{"key":"4012_CR32","doi-asserted-by":"publisher","first-page":"114183","DOI":"10.1016\/j.psychres.2021.114183","volume":"305","author":"P Voitsidis","year":"2021","unstructured":"Voitsidis, P., Kerasidou, M. D., Nikopoulou, A. V., et al. (2021). A systematic review of questionnaires assessing the psychological impact of COVID-19. Psychiatry Res Nov, 305, 114183. https:\/\/doi.org\/10.1016\/j.psychres.2021.114183","journal-title":"Psychiatry Res Nov"},{"issue":"3","key":"4012_CR33","doi-asserted-by":"publisher","first-page":"330","DOI":"10.1002\/jrsm.1354","volume":"10","author":"JR Polanin","year":"2019","unstructured":"Polanin, J. R., Pigott, T. D., Espelage, D. L., & Grotpeter, J. K. (2019). Best practice guidelines for abstract screening large-evidence systematic reviews and meta\u2010analyses. Res Synth Methods Sep, 10(3), 330\u2013342. https:\/\/doi.org\/10.1002\/jrsm.1354","journal-title":"Res Synth Methods Sep"},{"issue":"3","key":"4012_CR34","doi-asserted-by":"publisher","first-page":"240","DOI":"10.3163\/1536-5050.104.3.014","volume":"104","author":"WM Bramer","year":"2016","unstructured":"Bramer, W. M., Giustini, D., de Jonge, G. B., Holland, L., & Bekhuis, T. (2016). De-duplication of database search results for systematic reviews in endnote. J Med Libr Assoc Jul, 104(3), 240\u2013243. https:\/\/doi.org\/10.3163\/1536-5050.104.3.014","journal-title":"J Med Libr Assoc Jul"},{"key":"4012_CR35","unstructured":"Mokkink, L. B., Prinsen, C. A. C., Patrick, D. L. (2018). COSMIN methodology for systematic reviews of patient-reported outcome measures (PROMs)\u2013user manual 2018.."},{"issue":"5","key":"4012_CR36","doi-asserted-by":"publisher","first-page":"1171","DOI":"10.1007\/s11136-017-1765-4","volume":"27","author":"LB Mokkink","year":"2018","unstructured":"Mokkink, L. B., de Vet, H. C. W., Prinsen, C. A. C., et al. (2018). COSMIN risk of Bias checklist for systematic reviews of Patient-Reported outcome measures. Quality of Life Research May, 27(5), 1171\u20131179. https:\/\/doi.org\/10.1007\/s11136-017-1765-4","journal-title":"Quality of Life Research May"},{"issue":"4","key":"4012_CR37","doi-asserted-by":"publisher","first-page":"651","DOI":"10.1007\/s11136-011-9960-1","volume":"21","author":"CB Terwee","year":"2012","unstructured":"Terwee, C. B., Mokkink, L. B., Knol, D. L., Ostelo, R. W., Bouter, L. M., & de Vet, H. C. (2012). Rating the methodological quality in systematic reviews of studies on measurement properties: A scoring system for the COSMIN checklist. Quality of Life Research May, 21(4), 651\u2013657. https:\/\/doi.org\/10.1007\/s11136-011-9960-1","journal-title":"Quality of Life Research May"},{"issue":"1","key":"4012_CR38","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1186\/s12955-022-01964-4","volume":"2","author":"J Carlton","year":"2022","unstructured":"Carlton, J., & Powell, P. A. (2022). Measuring carer quality of life in Duchenne muscular dystrophy: A systematic review of the reliability and validity of self-report instruments using COSMIN. Health Qual Life Outcomes Apr, 2(1), 57. https:\/\/doi.org\/10.1186\/s12955-022-01964-4","journal-title":"Health Qual Life Outcomes Apr"},{"issue":"3","key":"4012_CR39","doi-asserted-by":"publisher","first-page":"276","DOI":"10.11613\/BM.2012.031","volume":"22","author":"ML McHugh","year":"2012","unstructured":"McHugh, M. L. (2012). Interrater reliability: The kappa statistic. Biochem Med (Zagreb), 22(3), 276\u2013282.","journal-title":"Biochem Med (Zagreb)"},{"issue":"6","key":"4012_CR40","doi-asserted-by":"publisher","first-page":"685","DOI":"10.1080\/13548506.2010.507773","volume":"15","author":"F Pagnini","year":"2010","unstructured":"Pagnini, F., Rossi, G., Lunetta, C., et al. (2010). Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med Dec, 15(6), 685\u2013693. https:\/\/doi.org\/10.1080\/13548506.2010.507773","journal-title":"Psychol Health Med Dec"},{"issue":"11","key":"4012_CR41","doi-asserted-by":"publisher","first-page":"835","DOI":"10.1007\/s004150070069","volume":"247","author":"C Jenkinson","year":"2000","unstructured":"Jenkinson, C., Fitzpatrick, R., Swash, M., & Peto, V. (2000). The ALS health profile study: Quality of life of amyotrophic lateral sclerosis patients and carers in Europe. J Neurol Nov, 247(11), 835\u2013840. https:\/\/doi.org\/10.1007\/s004150070069","journal-title":"J Neurol Nov"},{"issue":"2","key":"4012_CR42","first-page":"271","volume":"62","author":"JG Rabkin","year":"2000","unstructured":"Rabkin, J. G., Wagner, G. J., & Del Bene, M. (2000). Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Research support, Non-U.S. Gov\u2019t. Psychosom med. Mar-Apr, 62(2), 271\u2013279.","journal-title":"Mar-Apr"},{"issue":"3","key":"4012_CR43","doi-asserted-by":"publisher","first-page":"149","DOI":"10.1159\/000381625","volume":"44","author":"J Wolf","year":"2015","unstructured":"Wolf, J., Safer, A., Wohrle, J. C., et al. (2015). Factors predicting survival in ALS Patients\u2013Data from a Population-Based registry in Rhineland-Palatinate, Germany. Neuroepidemiology, 44(3), 149\u2013155. https:\/\/doi.org\/10.1159\/000381625","journal-title":"Neuroepidemiology"},{"key":"4012_CR44","doi-asserted-by":"publisher","unstructured":"Carlton, J., Peasgood, T., Khan, S., Barber, R., Bostock, J., & Keetharuth, A. D. An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs). Journal of Patient-Reported Outcomes. 2020\/01\/13 2020;4(1):4. https:\/\/doi.org\/10.1186\/s41687-019-0172-8","DOI":"10.1186\/s41687-019-0172-8"},{"key":"4012_CR45","doi-asserted-by":"publisher","unstructured":"Lasch, K. E., Marquis, P., Vigneux, M. (2010). PRO development: rigorous qualitative research as the crucial foundation. Quality of Life Research. 2010;19(8):1087\u20131096. https:\/\/doi.org\/10.1007\/s11136-010-9677-6.","DOI":"10.1007\/s11136-010-9677-6"},{"issue":"8","key":"4012_CR46","doi-asserted-by":"publisher","first-page":"991","DOI":"10.1016\/j.jval.2012.08.2204","volume":"15","author":"K Stevens","year":"2012","unstructured":"Stevens, K., & Palfreyman, S. (2012). The use of qualitative methods in developing the descriptive systems of preference-based measures of health-related quality of life for use in economic evaluation. Value Health Dec, 15(8), 991\u2013998. https:\/\/doi.org\/10.1016\/j.jval.2012.08.2204","journal-title":"Value Health Dec"},{"issue":"6","key":"4012_CR47","doi-asserted-by":"publisher","first-page":"678","DOI":"10.1080\/13607860701529965","volume":"11","author":"Y Bachner","year":"2007","unstructured":"Bachner, Y., & O\u2019rourke, N. (2007). Reliability generalization of responses by care providers to the Zarit burden interview. Aging & Mental Health, 11(6), 678\u2013685.","journal-title":"Aging & Mental Health"},{"issue":"1","key":"4012_CR48","doi-asserted-by":"publisher","first-page":"88","DOI":"10.1186\/s12913-017-2031-8","volume":"26","author":"M Sekhon","year":"2017","unstructured":"Sekhon, M., Cartwright, M., & Francis, J. J. (2017). Acceptability of healthcare interventions: An overview of reviews And development of a theoretical framework. BMC Health Serv Res Jan, 26(1), 88. https:\/\/doi.org\/10.1186\/s12913-017-2031-8","journal-title":"BMC Health Serv Res Jan"},{"issue":"1","key":"4012_CR49","doi-asserted-by":"publisher","first-page":"502","DOI":"10.1080\/13696998.2021.1907092","volume":"24","author":"SP McKenna","year":"2021","unstructured":"McKenna, S. P., & Heaney, A. (2021). Setting and maintaining standards for patient-reported outcome measures: Can we rely on the COSMIN checklists? J Med Econ Jan-Dec, 24(1), 502\u2013511. https:\/\/doi.org\/10.1080\/13696998.2021.1907092","journal-title":"J Med Econ Jan-Dec"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-025-04012-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11136-025-04012-y\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-025-04012-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,20]],"date-time":"2025-10-20T12:07:41Z","timestamp":1760962061000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11136-025-04012-y"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6,25]]},"references-count":49,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2025,10]]}},"alternative-id":["4012"],"URL":"https:\/\/doi.org\/10.1007\/s11136-025-04012-y","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"value":"0962-9343","type":"print"},{"value":"1573-2649","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6,25]]},"assertion":[{"value":"16 June 2025","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 June 2025","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 September 2025","order":4,"name":"change_date","label":"Change Date","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Update","order":5,"name":"change_type","label":"Change Type","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Missed Supplementary information files are included.","order":6,"name":"change_details","label":"Change Details","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable, the current review did not require institutional ethical approval.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable, the current review did not require participant consent to publish data.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"R. Bamber and C. McDermott have received funding through a National Institute for Health and Care Research (NIHR) Career Development Award awarded to C. McDermott (Award ID: NIHR301648) and the NIHR Sheffield Biomedical Research Centre. T. Stavroulakis and J. Carlton report no relevant disclosures.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"Not applicable, the current review did not require participant consent.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}}]}}