Tyler W Buckner1, Katharine Batt2, Doris Quon3, Michelle Witkop4, Michael Recht5, Craig Kessler6, Kimberly Baumann7, Grace Hernandez8, Michael Wang1, David L Cooper9, Christine L Kempton10. 1. University of Colorado School of Medicine, Aurora, CO, USA. 2. Wake Forest School of Medicine, Winston-Salem, NC, USA. 3. Orthopaedic Hemophilia Treatment Center, Orthopaedic Institute for Children, Los Angeles, CA, USA. 4. National Hemophilia Foundation, New York, NY, USA. 5. Oregon Health & Science University, Portland, OR, USA. 6. Georgetown University Hospital, Washington, DC, USA. 7. Center for Bleeding and Clotting Disorders, University of Minnesota Health, Minneapolis, MN, USA. 8. Center for Comprehensive Care and Diagnosis of Inherited Bleeding Disorders, Orange, CA, USA. 9. Novo Nordisk Inc., Plainsboro, NJ, USA. 10. Emory University School of Medicine, Atlanta, GA, USA.
Abstract
INTRODUCTION: Pain, functional impairment, anxiety, and depression associated with joint disease may affect health-related quality of life (HRQoL) in people with hemophilia. OBJECTIVE: To report detailed patient-reported outcomes (PRO) assessments related to HRQoL in participants in the Pain, Functional Impairment, and Quality of Life (P-FiQ) study. METHODS: Pain and HRQoL were assessed via PRO instruments in US adult males with hemophilia A or B and a history of joint pain or bleeding. PRO instruments included EQ-5D-5L with visual analog scale, Brief Pain Inventory v2 Short Form, SF-36v2, and Hemophilia Activities List. Instrument domain and item responses were described. RESULTS: Responses were collected from 381 adult males with a median age of 34 years. Pain was observed across instruments and affected daily activities and quality of life. Respondents reported functional impairment that limited the kind of work and activities they participated in, with activities involving the lower extremities being most affected. A high prevalence of mental health disorders was identified across instruments. CONCLUSIONS: Pain and HRQoL were evaluated using multiple PRO instruments, which vary in timescales of assessment and levels of detail. More consistent clinical assessments and patient dialog regarding pain and aspects of HRQoL may help drive improved outcomes.
INTRODUCTION:Pain, functional impairment, anxiety, and depression associated with joint disease may affect health-related quality of life (HRQoL) in people with hemophilia. OBJECTIVE: To report detailed patient-reported outcomes (PRO) assessments related to HRQoL in participants in the Pain, Functional Impairment, and Quality of Life (P-FiQ) study. METHODS:Pain and HRQoL were assessed via PRO instruments in US adult males with hemophilia A or B and a history of joint pain or bleeding. PRO instruments included EQ-5D-5L with visual analog scale, Brief Pain Inventory v2 Short Form, SF-36v2, and Hemophilia Activities List. Instrument domain and item responses were described. RESULTS: Responses were collected from 381 adult males with a median age of 34 years. Pain was observed across instruments and affected daily activities and quality of life. Respondents reported functional impairment that limited the kind of work and activities they participated in, with activities involving the lower extremities being most affected. A high prevalence of mental health disorders was identified across instruments. CONCLUSIONS:Pain and HRQoL were evaluated using multiple PRO instruments, which vary in timescales of assessment and levels of detail. More consistent clinical assessments and patient dialog regarding pain and aspects of HRQoL may help drive improved outcomes.
Authors: Michael Wang; Katharine Batt; Craig Kessler; Anne Neff; Neeraj N Iyer; David L Cooper; Christine L Kempton Journal: Patient Prefer Adherence Date: 2017-10-25 Impact factor: 2.711
Authors: Tyler W Buckner; Robert Sidonio; Michelle Witkop; Christine Guelcher; Susan Cutter; Neeraj N Iyer; David L Cooper Journal: Patient Relat Outcome Meas Date: 2019-09-18
Authors: Richard A Wilkins; Lara S Chapman; Jenny C Emmel; Thuvia Flannery; Graham J Chapman; Rebecca E A Walwyn; Anthony C Redmond; Heidi J Siddle Journal: Haemophilia Date: 2022-03-04 Impact factor: 4.263