{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,8]],"date-time":"2026-07-08T14:29:41Z","timestamp":1783520981697,"version":"3.55.0"},"reference-count":30,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2024,2,6]],"date-time":"2024-02-06T00:00:00Z","timestamp":1707177600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"<jats:sec><jats:title>Purpose<\/jats:title><jats:p>Quality of life refers to the degree of well-being a person feels. The development of a hemophilia-targeting quality of life scale is important for hemophiliacs and their treating physicians.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Textual analysis. First, a review of studies on quality of life, hemophilia and related quality of life scales was conducted; Subsequently, two rounds of systematic searches of the Springer database were conducted to filter the literature on universal quality of life scale studies and hemophilia-targeting quality of life scale studies by title and abstract, and then textual analysis was performed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The former included 77,456 articles, 26,117 chapters and 7,086 related bibliographies, while the latter initially retrieved 211 entries articles, 118 chapters and 43 related bibliographies. Through filtering, the former contains 22 documents, yielding 1,431 valid word stems, and the latter contains 9 documents, yielding 1,541 valid word stems.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>While universal quality of life scales mostly fit into the broad framework of WHOQOL- BREF, the development of hemophilia-targeting quality of life scales inclines towards pains that patients suffer and technology advances in pharmaceutical. The current hemophilia QOL scales are mainly based on the HR-QoL, others mainly based on the HR-QoL as the master version. At the same time, the popularization of existing hemophilia quality of life scales in developing countries like China is not high, and the development of hemophilia quality of life scales is insufficient.<\/jats:p><\/jats:sec>","DOI":"10.3389\/fpubh.2024.1294188","type":"journal-article","created":{"date-parts":[[2024,2,6]],"date-time":"2024-02-06T04:30:37Z","timestamp":1707193837000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":6,"title":["The hemophilia quality of life scale: a systematic 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ethics","author":"Tang","year":"2000"},{"key":"ref4","volume-title":"The ethical method","author":"Siddwick","year":"1993"},{"key":"ref5","first-page":"336","article-title":"A review of the measurement of subjective well-being","volume":"3","author":"Xing","year":"2002","journal-title":"Psychol Sci"},{"key":"ref6","first-page":"905","article-title":"Research paradigm and theoretical model of social exclusion","volume":"6","author":"Cheng","year":"2011","journal-title":"Adv Psychol Sci"},{"key":"ref7","first-page":"25","article-title":"Cross-century infectious disease prevention and control in China","volume":"2","author":"Cao","year":"1997","journal-title":"Chin J Epidemiol"},{"key":"ref8","first-page":"365","article-title":"The European Organization for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international clinical trials in oncology","volume-title":"J Natl Cancer Inst","author":"Aaronson","year":"1993"},{"key":"ref9","first-page":"7","article-title":"Introduction of common life quality measurement scales","volume":"1","author":"Chonghua","year":"2000","journal-title":"Chinese J Behav Med"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"309","DOI":"10.1007\/BF00433915","article-title":"A cross-cultural adaptation of the functional assessment of cancer therapy(FACT) quality of life measurement system for use in European oncology clinical trials","volume":"12","author":"Bonomi","year":"1995","journal-title":"Qual Life Res"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"634","DOI":"10.1002\/1097-0142(194811)1:4<634::AID-CNCR2820010410>3.0.CO;2-L","article-title":"The use of nitrogen mustards in the palliative treatment of carcinoma","volume":"1","author":"Karnofsky","year":"1948","journal-title":"Cancer"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"914","DOI":"10.1001\/jama.1963.03060120024016","article-title":"Studies of illness in the aged","volume":"185","author":"Katz","year":"1963","journal-title":"JAMA"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"71S","DOI":"10.1016\/S0021-9681(87)80035-8","article-title":"Assessment of psychological morbidity in primary care: explorations with the general health questionnaire","volume":"40","author":"Berwick","year":"1987","journal-title":"J Chron Dis"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"221","DOI":"10.1016\/0271-7123(81)90005-5","article-title":"The Nottingham health profile: subjective health status and medical consultations","volume":"15","author":"Hunt","year":"1981","journal-title":"Soc Sci Med"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"179","DOI":"10.1016\/s0140-6736(71)90336-9","article-title":"Index for measuring health","volume":"24","author":"Grogono","year":"1971","journal-title":"Lancet"},{"key":"ref16","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1097\/00005650-197601000-00006","article-title":"The sickness impact profile: validation of a health status measure","volume":"14","author":"Bergner","year":"1976","journal-title":"Med Care"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"899","DOI":"10.1016\/s0140-6736(76)92112-7","article-title":"Evaluation of quality of life in patients receiving treatment for advanced breast cancer","volume":"1","author":"Prestman","year":"1976","journal-title":"Lancet"},{"key":"ref18","first-page":"478","article-title":"Health status: types if validity and the index of wel-l being","volume":"11","author":"Kaplan","year":"1976","journal-title":"Health Serv Res"},{"key":"ref19","doi-asserted-by":"publisher","first-page":"585","DOI":"10.1016\/0021-9681(81)90058-8","article-title":"Measuring the quality of life of cancer patients: a concise of QL-index for use by physicians","volume":"14","author":"Spitzer","year":"1981","journal-title":"J Chron Dis"},{"key":"ref20","doi-asserted-by":"publisher","first-page":"472","DOI":"10.1200\/JCO.1984.2.5.472","article-title":"Measuring the quality of life of cancer patients: the functional living indexcancer: development and validation","volume":"2","author":"Schipper","year":"1984","journal-title":"J Clin Oncol"},{"key":"ref21","author":"Stewart","year":"1992","journal-title":"Measuring functional and well-being: the medical outcomes study approach"},{"key":"ref22","first-page":"135","article-title":"Development of a comprehensive quality of life measurement tool: CARES","volume":"4","author":"Schag","year":"1990","journal-title":"Oncology"},{"key":"ref23","first-page":"387","article-title":"Abstracts of the contributed papers","volume-title":"Qual Life Res","year":"1995"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"61","DOI":"10.1056\/NEJM197007092830203","article-title":"The genetic heterogeneity of hemophilia","volume":"283","author":"Brown","year":"1970","journal-title":"N Engl J Med"},{"key":"ref25","first-page":"49","article-title":"Expert consensus on diagnosis and treatment of hemophilia","volume":"1","author":"Ding","year":"2010","journal-title":"J Clin Hematol Oncol"},{"key":"ref26","first-page":"42","article-title":"An introduction to health-related quality of life and its international applications","author":"Yaoguang","year":"2011","journal-title":"Health Inf Manag J."},{"key":"ref27","doi-asserted-by":"crossref","DOI":"10.1007\/978-1-4020-5614-7","volume-title":"Encyclopedia of public health","author":"Kirch","year":"2008"},{"key":"ref28","doi-asserted-by":"crossref","DOI":"10.1007\/978-1-349-04242-5_1","article-title":"Codes","author":"Oberman","year":"1979","journal-title":"Digital Circuits for Binary Arithmetic"},{"key":"ref29","first-page":"39","article-title":"Applicability of 36-item concise scale in Chinese population","volume":"1","author":"Liu","year":"2001","journal-title":"J West China Univ Med Sci"},{"key":"ref30","first-page":"5","article-title":"Measurement of health-related quality of life in patients with age-related macular degeneration based on the European five-dimension five-level health scale and the Chinese version of the low vision quality of life scale","volume":"9","author":"Xu","year":"2023","journal-title":"Chin Pharmacoeconomics"}],"container-title":["Frontiers in Public 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