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P F Limperg, C B Terwee, N L Young, V E Price, S C Gouw, M Peters, M A Grootenhuis, V Blanchette, L Haverman
BACKGROUND: The evaluation of health related quality of life (HRQOL) is essential for a full assessment of the influence of an illness on patients' lives. The aim of this paper is to critically appraise and compare the measurement properties of HRQOL questionnaires studied in haemophilia. METHODS: Bibliographic databases (Embase, Medline, Cinahl and PsycInfo) were searched for articles evaluating measurement properties of HRQOL questionnaires in haemophilia. Articles were excluded that did not report HRQOL measurement properties, or when <50% of the study population had haemophilia...
July 2017: Haemophilia: the Official Journal of the World Federation of Hemophilia
M Romero, Y Moreno, L M Huerfano, M Monroy, M A Camacho
No abstract text is available yet for this article.
November 2015: Value in Health: the Journal of the International Society for Pharmacoeconomics and Outcomes Research
Maricela Osorio-Guzmán, Sandra Olvera-González, Georgina Eugenia Bazán-Riverón, Ricardo Carlos Gaitán-Fitch
No abstract text is available yet for this article.
March 2015: Salud Pública de México
R Dolatkhah, A Fakhari, M Z Pezeshki, R Shabanlouei, N Tavassoli, M Gholchin
The availability of safe and effective factor replacement therapies, in persons with haemophilia (PWH), has in some countries answered the basic need for treatment of these patients. The findings suggest that adult patients who have always been on prophylaxis reported significantly better physical functioning, and thus better quality of life. This study is designed to evaluate the QoL in adult PWH, by focusing on social determinants of QoL and their relationship with health-related dimensions, in Tabriz, Iran...
May 2014: Haemophilia: the Official Journal of the World Federation of Hemophilia
J A Aznar, M García-Dasí, S Pérez-Alenda, A Marco, M Jaca, A Moret, F Querol
BACKGROUND: Retrospective publications show a decrease in the bleeding frequency and an improvement in the quality of life (QoL) in severe adult haemophilia A (SAHA) after switching from the on-demand treatment (DT) to secondary prophylaxis (SP). But there are no prospective studies which demonstrate, using a haemophilia-specific questionnaire, an improvement in the QoL after such treatment change. The main objective of this study is to prospectively compare the QoL and the musculoskeletal assessment after switching from DT to SP in SAHA using the A36 Hemofilia-QoL(®) ...
January 2014: Vox Sanguinis
E Remor, P Arranz, M Quintana, A Villar, V Jiménez-Yuste, J L Diaz, C Rincón, C Marrero, M Moreno, J F Lucia, E Martínez, I Soto, C Sedano, R Gonzalez-Boullosa, M Prieto, M Garcia-Luaces, F Hernández-Navarro
Although there is a worldwide interest in the assessment of health-related quality-of-life (HRQoL) in haemophilia patients, no non-disease specific instruments (for adults) are readily available. In this paper, a haemophilia-specific quality-of-life assessment measure for adults (the Hemofilia-QoL questionnaire) has been developed and tested for psychometric properties in 121 adults with haemophilia living in Spain. The Hemofilia-QoL questionnaire is a self-report modular instrument that assesses nine relevant HRQoL domains for patients with haemophilia (e...
November 2005: Haemophilia: the Official Journal of the World Federation of Hemophilia
E Remor, N L Young, S Von Mackensen, E G Lopatina
The purpose of this paper is to summarize the state of the art in measuring quality of life in haemophila populations. The paper reviews the measures recently included in haemophila trials in the published literature. It also summarizes the development of four new disease-specific measures of health-related quality of life. Two of these were developed for children (the Haemo-QoL and the CHO-KLAT), and two for adults (the Hemofilia-QoL and the Hemolatin-QoL). These new measures show promise for use in clinical trials...
October 2004: Haemophilia: the Official Journal of the World Federation of Hemophilia
Cecilia Carruyo-Vizcaíno, Gilberto Vizcaíno, Edgardo Carrizo, Melvis Arteaga-Vizcaíno, Sandra Sarmiento, Jennifer Vizcaíno-Carruyo
The mental health of hemophilic individuals and their families play an important role on the integral treatment of the disease. The knowledge of the beliefs and attitudes perceived by the patients toward their disease will make possible a positive influence in their clinical improvement, their response to the treatment, as well as their quality of life. On the basis of the Azjen and Fishbein's Theory of Reasoned Action, a questionnaire was applied to 43 adult hemophilics to determine the salient beliefs about their disease...
September 2004: Investigación Clínica
P Arranz, E Remor, M Quintana, A Villar, J L Díaz, M Moreno, J Monteagudo, A Ugarriza, I Soto, R Pérez, J Chacón, M García-Luaces, A Cid, I Balda, M F López, M J Gutíerrez, E Martínez, C Marrero, M Prieto, C Sedano, R Vaca, C Altisent, F Hernández-Navarro
A haemophilia-specific health-related quality-of-life questionnaire (named 'Hemofilia-QoL') was developed to assess quality-of-life in adults with haemophilia, and was psychometrically tested. Seventy-three interviews with haemophilia patients and health care professionals were used to generate the items included in the questionnaire, and expert ratings on the items formulated were used to screen them for potential omission. This was followed by psychometric testing in a sample of 35 patients. Preliminary psychometric testing of the revised questionnaire version, which contains 10 domains (physical health, physical role, joint damage, pain, treatment satisfaction, emotional role, mental health, social support), showed acceptable reliability (alpha = 0...
July 2004: Haemophilia: the Official Journal of the World Federation of Hemophilia
S V Antunes, P Vicari, S Cavalheiro, J O Bordin
Intracranial haemorrhage (ICH) is a common cause of morbidity and mortality in haemophilic patients. The overall incidence of ICH has been reported to range from 2.2% to 7.5% in patients with haemophilia. From 1987 to 2001, 401 haemophilic patients from the Serviço de Hemofilia, Disciplina de Hematologia e Hemoterapia, Universidade Federal de São Paulo were evaluated. The episodes of ICH were documented by CT scan and the anatomic location, clinical presentation, relationship to trauma and clinical factors, including the presence of HIV infection and the presence of inhibitor, were reviewed...
September 2003: Haemophilia: the Official Journal of the World Federation of Hemophilia
No abstract text is available yet for this article.
December 1953: Archivos de Pediatría del Uruguay
A Girolami, L De Marco, L Virgolini, R Peruffo, F Fabris
Platelet adhesiveness and aggregation were studied in three patients with congenital afibrinogenemia. The results obtained may be summarized as follows: The retention of platelets to a glass-bead filter determined with the Salzman method was significantly decreased; it was normal after fibrinogen infusion. With a modification of the Hellem test the values obtained were slightly decreased. Adrenalin-induced aggregation was absent whereas ADP-and collagen-induced aggregation was near normal or slightly decreased...
February 1975: Blut
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