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

Pilot and Feasibility Studies
M W SkinnerA Iorio

Abstract

The interest of health care agencies, private payers and policy makers for patient-reported outcomes (PRO) is continuously increasing. There is a substantial need to improve capacity to collect and interpret relevant PRO data to support implementation of patient-centered research and optimal care in haemophilia. The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project aims to develop a patient-led research network, to develop a standardized questionnaire to gather patient-reported outcomes and to perform a feasibility study of implementing the PROBE questionnaire. A pilot questionnaire was developed using focus group methodology. Content and face validity were assessed by a pool of persons living with haemophilia (PWH) and content experts through interactive workshops. The PROBE questionnaire was translated with the forward-backward approach. PROBE recruited national haemophilia patient non-governmental organizations (NGOs) to administer the questionnaire to people with and without haemophilia. PROBE measured the time to complete the questionnaire and gathered feedback on its content and clarity; staff time and cost required to implement the questionnaire were also collected. The PROBE questionnaire is comprised o...Continue Reading

References

Feb 14, 2004·Haemophilia : the Official Journal of the World Federation of Hemophilia·M Manco-JohnsonP Larson
Feb 28, 2004·Haemophilia : the Official Journal of the World Federation of Hemophilia·N L YoungP J McCusker
Jul 3, 2004·Haemophilia : the Official Journal of the World Federation of Hemophilia·P ArranzUNKNOWN Hemofilia-QoL Group
Oct 14, 2004·Haemophilia : the Official Journal of the World Federation of Hemophilia·E RemorE G Lopatina
Oct 14, 2004·Haemophilia : the Official Journal of the World Federation of Hemophilia·P De KleijnN Tahir
Aug 10, 2007·The New England Journal of Medicine·Marilyn J Manco-JohnsonBruce L Evatt
Nov 8, 2007·Evaluation & the Health Professions·Jonathan B VanGeestVerna L Welch
Nov 19, 2009·HSS Journal : the Musculoskeletal Journal of Hospital for Special Surgery·E Carlos Rodriguez-Merchan
Jul 16, 2010·Haemophilia : the Official Journal of the World Federation of Hemophilia·G BlameyT Flannery
Aug 3, 2010·The Journal of Bone and Joint Surgery. British Volume·N J GoddardC A Lee
Dec 15, 2010·The New England Journal of Medicine·Michael E Porter
Apr 5, 2012·Nature Reviews. Genetics·Jane KayeStefan F Winter
Jun 29, 2012·Haemophilia : the Official Journal of the World Federation of Hemophilia·Mark W Skinner
Jul 11, 2012·Haemophilia : the Official Journal of the World Federation of Hemophilia·A SrivastavaUNKNOWN Treatment Guidelines Working Group on Behalf of The World Federation Of Hemophilia
Aug 24, 2012·Haemophilia : the Official Journal of the World Federation of Hemophilia·D NooneL Prihodova
Nov 6, 2015·Therapeutic Innovation & Regulatory Science·Anton HoosGervais Tougas
Feb 11, 2016·The New England Journal of Medicine·Michael E PorterThomas H Lee
Apr 15, 2016·Haemophilia : the Official Journal of the World Federation of Hemophilia·L H SchrijversK Fischer
Jun 28, 2016·Haemophilia : the Official Journal of the World Federation of Hemophilia·M PaiA Iorio
Oct 8, 2016·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Maria M LowePaul Wicks

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Citations

Mar 13, 2019·Haemophilia : the Official Journal of the World Federation of Hemophilia·Chatree Chai-AdisaksophaAlfonso Iorio
Apr 19, 2019·Journal of Community Psychology·Kayla J FikeTraci M Kennedy
Jul 23, 2019·Haemophilia : the Official Journal of the World Federation of Hemophilia·Barbara A KonkleUNKNOWN members of Working Group 2, the NHLBI State of the Science Workshop on factor VIII inhibitors: Generating a national bluepri
Jan 21, 2019·Journal of Youth and Adolescence·Elizabeth B RaposaSaida Hussain
Sep 2, 2020·Haemophilia : the Official Journal of the World Federation of Hemophilia·Chatree Chai-AdisaksophaAlfonso Iorio
Oct 15, 2019·Pilot and Feasibility Studies·Gillian A Lancaster, Lehana Thabane
Apr 24, 2019·Research and Practice in Thrombosis and Haemostasis·Barbara A KonkleAlfonso Iorio
May 23, 2019·Haemophilia : the Official Journal of the World Federation of Hemophilia·Wolfgang MiesbachMike Makris
Jun 18, 2020·Research and Practice in Thrombosis and Haemostasis·Saunya DoverBrian M Feldman
Oct 24, 2020·Haemophilia : the Official Journal of the World Federation of Hemophilia·Charles R M HayCraig M Kessler
Feb 8, 2021·Haemophilia : the Official Journal of the World Federation of Hemophilia·Camila C AquinoAlfonso Iorio
Jan 6, 2021·Haemophilia : the Official Journal of the World Federation of Hemophilia·Marilyn J Manco-JohnsonMichael Wang
May 25, 2021·Research and Practice in Thrombosis and Haemostasis·Erna C van BalenSamantha C Gouw
Jul 7, 2021·Journal of Clinical Epidemiology·Claire L ChanSandra M Eldridge
Aug 12, 2021·Research and Practice in Thrombosis and Haemostasis·Evelien Krumb, Cedric Hermans
Sep 20, 2021·Haemophilia : the Official Journal of the World Federation of Hemophilia·Federico GerminiAlfonso Iorio

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Clinical Trials Mentioned

NCT02439710

Software Mentioned

EuroQol
PROBE
CETRA Language Solutions
Hemofilia
QoL

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