Development of a new disease-specific quality-of-life questionnaire to adults living with haemophilia

Haemophilia : the Official Journal of the World Federation of Hemophilia
P ArranzHemofilia-QoL Group

Abstract

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 = 0.94 for the Hemofilia-QoL total score) and validity, and this will be examined in a subsequent study with a larger patient sample.

References

Dec 1, 1990·Journal of Internal Medicine·F R RosendaalE Briët
May 3, 2000·Haemophilia : the Official Journal of the World Federation of Hemophilia·J A AznarJ M Tusell
Mar 12, 2002·Haemophilia : the Official Journal of the World Federation of Hemophilia·S RoyalUNKNOWN European haemophilia economics study group
Apr 23, 2002·Haemophilia : the Official Journal of the World Federation of Hemophilia·M BullingerM Vicariot
Apr 24, 2003·Haemophilia : the Official Journal of the World Federation of Hemophilia·K FischerH M van den Berg
Aug 22, 2007·Trends in Cell Biology·S Anastasi

❮ Previous
Next ❯

Citations

Sep 6, 2012·International Journal of Behavioral Medicine·Eduardo Remor
Dec 14, 2011·Hematology·Kathleen A Johnson, Zheng-Yi Zhou
Jun 5, 2014·BioMed Research International·Agoritsa VarakliotiDimitris Niakas
Jun 23, 2009·Blood Coagulation & Fibrinolysis : an International Journal in Haemostasis and Thrombosis·Lene Klixbüll AmbyJens Bjerre
Feb 19, 2016·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Bianca WieringDiana Delnoij
Mar 13, 2016·The Journal of Allergy and Clinical Immunology. in Practice·Nieves PriorTeresa Caballero
Aug 13, 2011·Thrombosis and Haemostasis·Adam GaterMartin Strandberg-Larsen
Jun 3, 2015·Haemophilia : the Official Journal of the World Federation of Hemophilia·H M van den BergA Srivastava
Oct 14, 2004·Haemophilia : the Official Journal of the World Federation of Hemophilia·E RemorE G Lopatina
Oct 21, 2005·Haemophilia : the Official Journal of the World Federation of Hemophilia·E RemorUNKNOWN Hemofilia-QoL Project Group
May 29, 2009·Haemophilia : the Official Journal of the World Federation of Hemophilia·D GlobeUNKNOWN Healthrelated Quality Of Life Expert Working Group Of The International Prophylaxis Study Group
Sep 22, 2007·Haemophilia : the Official Journal of the World Federation of Hemophilia·S VON Mackensen
Jul 31, 2008·Haemophilia : the Official Journal of the World Federation of Hemophilia·A RentzUNKNOWN Members of the HAEMO-QoL-A Steering Committee
Nov 7, 2006·Haemophilia : the Official Journal of the World Federation of Hemophilia·D TalaulikarM Pidcock
Jun 25, 2008·Haemophilia : the Official Journal of the World Federation of Hemophilia·A Gringeri, S Von Mackensen
Apr 18, 2012·Haemophilia : the Official Journal of the World Federation of Hemophilia·J-L PoonK A Johnson
Nov 22, 2012·Haemophilia : the Official Journal of the World Federation of Hemophilia·S von MackensenM Strandberg-Larsen
Jun 29, 2012·Haemophilia : the Official Journal of the World Federation of Hemophilia·P PoonnooseB M Feldman
Apr 20, 2010·Haemophilia : the Official Journal of the World Federation of Hemophilia·S Z SalekB Sørensen
Oct 14, 2011·Haemophilia : the Official Journal of the World Federation of Hemophilia·P de MoerlooseC Hermans
Jul 13, 2012·Haemophilia : the Official Journal of the World Federation of Hemophilia·Margareth C OzeloRenchi Yang
Jun 25, 2014·European Journal of Haematology. Supplementum·Françoise BoehlenErik Berntorp
Apr 26, 2014·Haemophilia : the Official Journal of the World Federation of Hemophilia·V S BlanchetteJ N Mahlangu
Nov 21, 2013·Haemophilia : the Official Journal of the World Federation of Hemophilia·R DolatkhahM Gholchin
Jan 24, 2006·Seminars in Hematology·Pradeep M Poonnoose, Alok Srivastava
Oct 31, 2013·Rehabilitation Nursing : the Official Journal of the Association of Rehabilitation Nurses·Detrice Green Barry, Sandra Hibner
Jun 6, 2009·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Monika BullingerSylvia von Mackensen
Aug 13, 2005·Theoretical Biology & Medical Modelling·David L Abel, Jack T Trevors
Mar 24, 2017·European Journal of Haematology·Cedric HermansSilva Zupančić Šalek
Apr 22, 2017·Haemophilia : the Official Journal of the World Federation of Hemophilia·P F LimpergL Haverman
Oct 11, 2017·Clinical and Applied Thrombosis/hemostasis : Official Journal of the International Academy of Clinical and Applied Thrombosis/Hemostasis·Agoritsa VarakliotiOlga Katsarou
Aug 31, 2018·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Erin McCabeDouglas P Gross
May 12, 2020·British Journal of Haematology·Rachel RaymentUNKNOWN British Society for Haematology
Feb 8, 2021·Haemophilia : the Official Journal of the World Federation of Hemophilia·Camila C AquinoAlfonso Iorio
Jun 26, 2021·Nature Reviews. Disease Primers·Erik BerntorpVictor Blanchette
Jul 11, 2021·Journal of Thrombosis and Haemostasis : JTH·Erna C van BalenSamantha C Gouw

❮ Previous
Next ❯

Related Concepts

Related Feeds

Blood Clotting Disorders

Thrombophilia includes conditions with increased tendency for excessive blood clotting. Blood clotting occurs when the body has insufficient amounts of specialized proteins that make blood clot and stop bleeding. Here is the latest research on blood clotting disorders.

Related Papers

Haemophilia : the Official Journal of the World Federation of Hemophilia
S von MackensenHAEMO-QOL GROUP
Haemophilia : the Official Journal of the World Federation of Hemophilia
A M RentzMembers of the HAEMO-QoL-A Steering Committee
Haemophilia : the Official Journal of the World Federation of Hemophilia
M J Manco-JohnsonP Larson
Haemophilia : the Official Journal of the World Federation of Hemophilia
E RemorE G Lopatina
© 2022 Meta ULC. All rights reserved