Literature DB >> 15479369

Disease-specific quality-of-life measurement tools for haemophilia patients.

E Remor1, N L Young, S Von Mackensen, E G Lopatina.   

Abstract

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. Further research is in progress to complete the psychometric testing and cross-cultural validation.

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Year:  2004        PMID： 15479369     DOI： 10.1111/j.1365-2516.2004.01004.x

Source DB:  PubMed          Journal:  Haemophilia        ISSN： 1351-8216            Impact factor:   4.287


  9 in total

1.  Need for Prophylactic Treatment in Adult Haemophilia A Patients.

Authors:  Berthold Siegmund; Heinrich Richter; Hartmut Pollmann
Journal:  Transfus Med Hemother       Date:  2009-07-10       Impact factor: 3.747

2.  Translation, Validation, and Psychometric Evaluation of the Diabetes Quality-of-Life Brief Clinical Inventory: The Urdu Version.

Authors:  Sajjad Haider; Fahad Saleem; Nafees Ahmad; Qaiser Iqbal; Mohammad Bashaar
Journal:  J Multidiscip Healthc       Date:  2022-04-29

Review 3.  Primary prophylaxis in children with haemophilia.

Authors:  Antonio Coppola; Mirko Di Capua; Ciro De Simone
Journal:  Blood Transfus       Date:  2008-09       Impact factor: 3.443

4.  Adherence to treatment regimen and bleeding rates in a prospective cohort of youth and young adults on low-dose daily prophylaxis for severe hemophilia A.

Authors:  Terry Mizrahi; Jean St-Louis; Nancy L Young; Francine Ménard; Nichan Zourikian; Evemie Dubé; Georges E Rivard
Journal:  BMC Hematol       Date:  2016-11-08

5.  The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project: development and evaluation of a questionnaire assessing patient reported outcomes in people with haemophilia.

Authors:  M W Skinner; C Chai-Adisaksopha; R Curtis; N Frick; M Nichol; D Noone; B O'Mahony; D Page; J S Stonebraker; A Iorio
Journal:  Pilot Feasibility Stud       Date:  2018-02-27

6.  Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study.

Authors:  Heng Zhang; Jie Huang; Xiaoyan Kong; Gaoxiang Ma; Yongjun Fang
Journal:  Health Qual Life Outcomes       Date:  2019-02-06       Impact factor: 3.186

7.  Effect of Pulsed Electromagnetic Fields on Clinical Signs and Quality of Life in Patients with Hemophilic Arthropathy of the Knee Joint: A Randomized Controlled Trial.

Authors:  Azam Khami; Mohammad Mohsen Roostayi; Behrouz Parhampour; Zahra Heidari; Hamzeh Baharlouei; Hamid Hoorfar
Journal:  Adv Biomed Res       Date:  2020-12-23

8.  Psychometric properties of the Greek Haem-A-QoL for measuring quality of life in Greek haemophilia patients.

Authors:  Agoritsa Varaklioti; Nick Kontodimopoulos; Olga Katsarou; Dimitris Niakas
Journal:  Biomed Res Int       Date:  2014-05-06       Impact factor: 3.411

9.  Health-Related Quality of Life and Association With Arthropathy in Greek Patients with Hemophilia.

Authors:  Agoritsa Varaklioti; Nick Kontodimopoulos; Dimitris Niakas; Anna Kouramba; Olga Katsarou
Journal:  Clin Appl Thromb Hemost       Date:  2017-10-09       Impact factor: 2.389
  9 in total

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