Journal ArticleDOI
Development of a health-related quality of life measure for boys with haemophilia: the Canadian Haemophilia Outcomes--Kids Life Assessment Tool (CHO-KLAT).
Nancy L. Young,Nancy L. Young,C. S. Bradley,C. S. Bradley,Victor S. Blanchette,Victor S. Blanchette,C. D. Wakefield,Dorothy R. Barnard,Dorothy R. Barnard,John K. Wu,Patricia McCusker +10 more
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TLDR
The CHO‐KLAT is a promising disease‐specific measure of QoL that reflects children's unique perspectives and this child‐centric focus distinguishes the CHO‐ KLAT from alternative measures ofQoL.Citations
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WFH Guidelines for the Management of Hemophilia, 3rd edition
Alok Srivastava,Elena Santagostino,Alison Dougall,Steve Kitchen,Megan Sutherland,Steven W. Pipe,Manuel Carcao,Johnny Mahlangu,Margaret V. Ragni,Jerzy Windyga,Adolfo Llinás,Nicholas J. Goddard,Richa Mohan,Pradeep M. Poonnoose,Brian M. Feldman,Sandra Zelman Lewis,H. Marijke van den Berg,Glenn F. Pierce +17 more
TL;DR: The WFH Guidelines for the Management of Hemophilia panelists and co-authors thank the panelists for their time and share their views on how to better understand and treat hemophilia.
Journal ArticleDOI
Health-Related Quality of Life Measurement in Children and Adolescents: A Systematic Review of Generic and Disease-Specific Instruments
Maite Solans,Sabrina Pane,Maria-Dolors Estrada,Vicky Serra-Sutton,Silvina Berra,Michael Herdman,Jordi Alonso,Luis Rajmil +7 more
TL;DR: The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specific questionnaires, and many of the instruments meet accepted standards for psychometric properties.
Journal ArticleDOI
Effects of secondary prophylaxis started in adolescent and adult haemophiliacs.
Annarita Tagliaferri,Massimo Franchini,A. Coppola,Gianna Franca Rivolta,Cristina Santoro,G. Rossetti,Giulio Feola,Ezio Zanon,Alfredo Dragani,PG Iannaccaro,Paolo Radossi,P. M. Mannucci +11 more
TL;DR: With respect to on‐demand treatment, higher factor consumption and cost of secondary prophylaxis were balanced by marked clinical benefits and greater well‐being in this cohort of adolescent/adult haemophiliacs.
Journal ArticleDOI
Patient-Reported Outcome and Observer-Reported Outcome Assessment in Rare Disease Clinical Trials: An ISPOR COA Emerging Good Practices Task Force Report
Katy L. Benjamin,Margaret K. Vernon,Donald L. Patrick,Eleanor M. Perfetto,Sandra Nestler-Parr,Laurie B. Burke +5 more
TL;DR: This report provides state-of-the-art solutions to patient-reported outcome (PRO) and observer- reported outcome (ObsRO) assessments challenges in clinical trials of patients with RDs.
Journal ArticleDOI
Quality of life and sports activities in patients with haemophilia.
TL;DR: Quality of life (QoL) is a multidimensional construct pertaining to an individual’s physical, emotional, mental, social and behavioural components of well-being and functioning and sports activities should become part of the global approach to haemophilia management.
References
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Journal ArticleDOI
Guidelines for the process of cross-cultural adaptation of self-report measures.
TL;DR: The guidelines described in this document are based on a review of cross-cultural adaptation in the medical, sociological, and psychological literature and led to the description of a thorough adaptation process designed to maximize the attainment of semantic, idiomatic, experiential, and conceptual equivalence between the source and target questionnaires.
Journal ArticleDOI
The world health organization quality of life assessment (WHOQOL) - position paper from the world health organization
Willem Kuyken,John Orley,Mick Power,Helen Herrman,Hilary Schofield,B. Murphy,Željko Metelko,Silvija Szabo,Mirjana Pibernik-Okanović,N. Quemada,A. Caria,S. Rajkumar,S. Kumar,Shekhar Saxena,Dan Bar-On,M. Amir,M. Tazaki,A. Noji,G. Vanheck,J. Devries,J.A. Sucre,L. Picardami,M. Kabanov,A. Lomachenkov,G. Burkovsky +24 more
TL;DR: The World Health Organization's project to develop a quality of life instrument (the WHOQOL) is described, the reasons that the project was undertaken, the thinking that underlies the project, the method that has been followed in its development and the current status of the project.
Journal ArticleDOI
A critical appraisal of the quality of quality-of-life measurements
TL;DR: To evaluate how well quality of life is being measured in the medical literature and to offer a new approach to the measurement, original English-language articles having the term "quality of life" in their titles were identified.
Journal ArticleDOI
The hemophilias--from royal genes to gene therapy.
TL;DR: Of the various types of hemophilia, the most common of these lifelong bleeding disorders are due to an inherited deficiency of factor VIII or factor IX (Table 1).
Journal ArticleDOI
Translating health status questionnaires and evaluating their quality: The IQOLA Project approach
Monika Bullinger,Jordi Alonso,Giovanni Apolone,Alain Leplège,Marianne Sullivan,Sharon Wood-Dauphinee,Barbara Gandek,Anita K. Wagner,Neil K. Aaronson,Per Bech,Shunichi Fukuhara,Stein Kaasa,John E. Ware +12 more
TL;DR: The most difficult items to translate were physical functioning items, which used examples of activities and distances that are not common outside of the United States; items that used colloquial expressions such as pep or blue; and the social functioning items.
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Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL).
Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia.
Marilyn J. Manco-Johnson,Marilyn J. Manco-Johnson,Thomas C. Abshire,Amy D. Shapiro,Brenda Riske,Michele R. Hacker,Ray F. Kilcoyne,J. David Ingram,M L Manco-Johnson,Sharon Funk,Linda J. Jacobson,Leonard A. Valentino,W. Keith Hoots,George R. Buchanan,Donna DiMichele,Michael Recht,Deborah L Brown,Cindy A. Leissinger,Shirley Bleak,Alan R. Cohen,Prasad Mathew,Alison Matsunaga,Desiree Medeiros,Diane J. Nugent,Gregory Thomas,Alexis A. Thompson,Kevin McRedmond,J. Michael Soucie,Harlan Austin,Bruce L. Evatt +29 more