Haemophilia item bank based on International Classification of Functioning, Disability and Health: a systematic review

References

• Mahlangu J, Oldenburg J, Callaghan MU, et al. Health-related quality of life and health status in persons with haemophilia A with inhibitors: a prospective, multicentre, non-interventional study (NIS). Haemophilia. 2019;25(3):382–391.
   PubMed Web of Science ®Google Scholar
• Oldenburg J, Tran H, Peyvandi F, et al. Health-related quality of life and health status in adolescent and adult people with haemophilia A without factor VIII inhibitors—A non-interventional study. Haemophilia. 2021;27(3):398–407.
   PubMed Web of Science ®Google Scholar
• Fischer K, Steen Carlsson K, Petrini P, et al. Intermediate-dose versus high-dose prophylaxis for severe hemophilia: comparing outcome and costs since the 1970s. Blood. 2013;122(7):1129–1136.
   PubMed Web of Science ®Google Scholar
• Manco-Johnson MJ, Warren BB, Buckner TW, et al. Outcome measures in haemophilia: beyond ABR (annualized bleeding rate). Haemophilia. 2021;27(S3):87–95.
   PubMedGoogle Scholar
• Riva S, Bullinger M, Amann E, et al. Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY). Health Qual Life Outcomes. 2010;8(1):139.
   PubMedGoogle Scholar
• Pollak E, Mühlan H, VON Mackensen S, et al. The haemo-Qol index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia. Haemoph Off J World Fed Hemoph. 2006;12(4):384–392.
   PubMed Web of Science ®Google Scholar
• Von Mackensen S, Bullinger M, Group H-Q. Development and testing of an instrument to assess the quality of life of children with haemophilia in Europe (haemo-QoL). Haemophilia. 2004;10(s1):17–25.
   PubMedGoogle Scholar
• Pandey B, Barnes RFW, Sun HL, et al. Risk of diabetes in haemophilia patients compared to clinic and non-clinic control cohorts. Haemoph Off J World Fed Hemoph. 2022;28(3):445–452.
   PubMed Web of Science ®Google Scholar
• St-Louis J, Abad A, Funk S, et al. The hemophilia joint health score version 2.1 validation in adult patients study: a multicenter international study. Res Pract Thromb Haemost. 2022;6(2):e12690.
   PubMed Web of Science ®Google Scholar
• Gilbert MS. Prophylaxis: musculoskeletal evaluation. Semin Hematol. 1993;30(3 Suppl 2):3–6.
   PubMed Web of Science ®Google Scholar
• Rentz A, Flood E, Altisent C, et al. Cross-cultural development and psychometric evaluation of a patient-reported health-related quality of life questionnaire for adults with haemophilia. Haemoph Off J World Fed Hemoph. 2008;14(5):1023–1034.
   PubMed Web of Science ®Google Scholar
• van Genderen FR, Westers P, Heijnen L, et al. Measuring patients’ perceptions on their functional abilities: validation of the Haemophilia Activities List. Haemoph Off J World Fed Hemoph. 2006;12(1):36–46.
   PubMed Web of Science ®Google Scholar
• Lövdahl S, Henriksson KM, Baghaei F, et al. Hypertension and cardiovascular diseases in Swedish persons with haemophilia - A longitudinal registry study. Thromb Res. 2019;181:106–111.
   PubMed Web of Science ®Google Scholar
• International Classification of Functioning, Disability and Health (ICF). https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health (accessed December 21, 2022).
   Google Scholar
• Cieza A, Fayed N, Bickenbach J, et al. Refinements of the ICF linking rules to strengthen their potential for establishing comparability of health information. Disabil Rehabil. 2019;41(5):574–583.
   PubMed Web of Science ®Google Scholar
• Bernardelli RS, Santos BC, Scharan KO, et al. Application of the refinements of ICF linking rules to the Visual Analogue Scale, Roland Morris questionnaire and SF-36. Cienc Saude Coletiva. 2021;26(3):1137–1152.
   PubMed Web of Science ®Google Scholar
• Fréz AR, Abdallah AA, Riedi C, et al. Proposed Use of the international classification of functioning, disability and health to evaluate quality of life after an amputation. Fisioter Em Mov. 2014;27(1):49–56.
   Google Scholar
• Prodinger B, Cieza A, Williams DA, et al. Measuring health in patients with fibromyalgia: content comparison of questionnaires based on the international classification of functioning, disability and health. Arthritis Rheum. 2008;59(5):650–658.
   PubMedGoogle Scholar
• Cieza A, Stucki G. Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). Qual Life Res. 2005;14(5):1225–1237.
   PubMed Web of Science ®Google Scholar
• De la Corte-Rodriguez H, Rodriguez-Merchan EC. The ICF (International Classification of Functioning, Disability and Health) developed by the WHO for measuring function in hemophilia. Expert Rev Hematol. 2016;9(7):661–668.
   PubMed Web of Science ®Google Scholar
• Fischer K, Poonnoose P, Dunn AL, et al. Choosing outcome assessment tools in haemophilia care and research: a multidisciplinary perspective. Haemophilia. 2017;23(1):11–24.
   PubMed Web of Science ®Google Scholar
• Timmer MA, Gouw SC, Feldman BM, et al. Measuring activities and participation in persons with haemophilia: a systematic review of commonly used instruments. Haemoph Off J World Fed Hemoph. 2018;24(2):e33–e49.
   PubMed Web of Science ®Google Scholar
• Kurtaiş Y, Őztuna D, Küçükdeveci AA, et al. Reliability, construct validity and measurement potential of the ICF comprehensive core set for osteoarthritis. BMC Musculoskelet Disord. 2011;12(1):255.
   PubMedGoogle Scholar
• Ehrmann C, Prodinger B, Stucki G, et al. Icf generic Set as New standard for the system wide assessment of functioning in China: a multicentre prospective study on metric properties and responsiveness applying item response theory. BMJ Open. 2018;8(12):e021696.
   PubMed Web of Science ®Google Scholar
• Prodinger B, Cieza A, Oberhauser C, et al. Toward the international classification of functioning, disability and health (ICF) rehabilitation set: a minimal generic set of domains for rehabilitation as a health strategy. Arch Phys Med Rehabil. 2016;97(6):875–884.
   PubMed Web of Science ®Google Scholar
• Stucki G, Cieza A, Geyh S, et al. ICF Core Sets for rheumatoid arthritis. J Rehabil Med. 2004;36(0):87–93.
   Google Scholar
• Scheuringer M, Stucki G, Huber EO, et al. ICF Core Set for patients with musculoskeletal conditions in early post-acute rehabilitation facilities. Disabil Rehabil. 2005;27(7–8):405–410.
   PubMed Web of Science ®Google Scholar
• Krasuska M, Riva S, Fava L, et al. Linking quality-of-life measures using the International Classification of Functioning, Disability and Health and the International Classification of Functioning, Disability and Health-Children and Youth Version in chronic health conditions: the example of young people with hemophilia. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):S74–S83.
   PubMedGoogle Scholar
• Gouw SC, Timmer MA, Srivastava A, et al. Measurement of joint health in persons with haemophilia: a systematic review of the measurement properties of haemophilia-specific instruments. Haemophilia. 2019;25(1):e1–e10.
   PubMed Web of Science ®Google Scholar
• Pettersson H, Ahlberg A, Nilsson IM. A radiologic classification of hemophilic arthropathy. Clin Orthop. 1980;149:153–159.
   PubMed Web of Science ®Google Scholar
• Poonnoose PM, Thomas R, Keshava SN, et al. Psychometric analysis of the functional independence score in haemophilia (FISH). Haemoph Off J World Fed Hemoph. 2007;13(5):620–626.
   PubMed Web of Science ®Google Scholar
• Wharfe G, Buchner-Daley L, Gibson T, et al. The Jamaican haemophilia registry: describing the burden of disease. Haemoph Off J World Fed Hemoph. 2018;24(4):e179–e186.
   PubMed Web of Science ®Google Scholar
• Skinner MW, Chai-Adisaksopha C, Curtis R, et al. The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project: development and evaluation of a questionnaire assessing patient reported outcomes in people with haemophilia. Pilot Feasibility Stud. 2018;4:58.
   PubMedGoogle Scholar
• Remor E. Development and psychometric testing of the Hemophilia Well-being Index. Int J Behav Med. 2013;20(4):609–617.
   PubMed Web of Science ®Google Scholar
• Roosendaal G, van Rinsum AC, Vianen ME, et al. Haemophilic arthropathy resembles degenerative rather than inflammatory joint disease. Histopathology. 1999;34(2):144–153.
   PubMed Web of Science ®Google Scholar
• Blobel C, Haxaire C, Kalliolias G, et al. Blood-Induced arthropathy in hemophilia: mechanisms and heterogeneity. Semin Thromb Hemost. 2015;41(08):832–837.
   PubMedGoogle Scholar
• Valentino LA. Blood-induced joint disease: the pathophysiology of hemophilic arthropathy. J Thromb Haemost. 2010;8(9):1895–1902.
   PubMed Web of Science ®Google Scholar
• Gualtierotti R, Solimeno LP, Peyvandi F. Hemophilic arthropathy: current knowledge and future perspectives. J Thromb Haemost. 2021;19(9):2112–2121.
   PubMed Web of Science ®Google Scholar
• de Kleijn P, van Genderen FR, van Meeteren NLU. Assessing functional health status in adults with haemophilia: towards a preliminary core Set of clinimetric instruments based on a literature search in rheumatoid arthritis and osteoarthritis. Haemoph Off J World Fed Hemoph. 2005;11(4):308–318.
   PubMed Web of Science ®Google Scholar
• Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia. Haemophilia. 2020;26(s6):1–158.
   PubMed Web of Science ®Google Scholar
• van Balen EC, Haverman L, Hassan S, et al. Validation of PROMIS Profile-29 in adults with hemophilia in The Netherlands. J Thromb Haemost. 2021;19(11):2687–2701.
   PubMed Web of Science ®Google Scholar
• Feng C, Geng B-F, Liu S-G, et al. Activity and participation in haemophiliacs: item response modelling based on international classification of functioning, disability and health. Haemoph Off J World Fed Hemoph. 2023;29(1):308–316.
   PubMedGoogle Scholar