C L Kempton1, M Recht2, A Neff3, M Wang4, T W Buckner4, A Soni5, D Quon6, M Witkop7, L Boggio8, R Z Gut9, D L Cooper9. 1. Emory University School of Medicine, Atlanta, GA, USA. 2. Oregon Health & Science University, Portland, OR, USA. 3. Cleveland Clinic, Cleveland, OH, USA. 4. University of Colorado School of Medicine, Aurora, CO, USA. 5. Center for Inherited Blood Disorders, CHOC Children's Hospital/UC Irvine, Orange, CA, USA. 6. Orthopaedic Hemophilia Treatment Center, Orthopaedic Institute for Children, Los Angeles, CA, USA. 7. Munson Medical Center, Traverse City, MI, USA. 8. Rush University Medical Center, Chicago, IL, USA. 9. Novo Nordisk Inc., Plainsboro, NJ, USA.
Abstract
INTRODUCTION: Standardized and disease-specific patient-reported outcome (PRO) instruments assessing pain, functional impairment and health-related quality of life (HRQoL) in people with haemophilia (PWH) have been used in studies, but infrequently in comprehensive care settings for individual assessment or treatment planning. AIM: To assess the impact of pain and functional impairment on HRQoL in PWH. METHODS: P-FiQ enrolled 381 adult PWH with a history of joint pain/bleeding and included 5 PROs and a clinical joint evaluation (Hemophilia Joint Health Score v2.1 [HJHS]). RESULTS: Median age was 34 years; 49.9% reported a history of joint procedure or surgery. On EQ-5D-5L, most reported problems with mobility (61.4%), usual activities (53.2%) and pain/discomfort (76.1%). On Brief Pain Inventory v2 Short Form, median worst pain (range 0-10) was 6, least pain 1, average pain 3 and current pain 2. Ankles were most frequently reported as the most painful joints (37.4%), followed by knees (23.7%) and elbows (18.9%). On International Physical Activity Questionnaire, 51% reported no activity in the prior week. On SF-36v2 health survey, median subscores were worse for 4 physical health domains vs 4 mental health domains. Among Hemophilia Activities List domains (range 0 [worst]-100 [best]), functions of the legs (median, 66.7) and lying/sitting/kneeling/standing (median, 67.5) were most impacted and self-care least impacted (median, 100.0). On HJHS, ankle scores (median, 6.0; range, 0-40) were worse than elbow/knee scores (median, 4.0/4.0). Results were consistent across PROs/HJHS. CONCLUSION: Data demonstrate challenges of predominantly ankle/knee pain and lower extremity functional impairment in US adult PWH, affecting HRQoL across PROs/HJHS.
INTRODUCTION: Standardized and disease-specific patient-reported outcome (PRO) instruments assessing pain, functional impairment and health-related quality of life (HRQoL) in people with haemophilia (PWH) have been used in studies, but infrequently in comprehensive care settings for individual assessment or treatment planning. AIM: To assess the impact of pain and functional impairment on HRQoL in PWH. METHODS:P-FiQ enrolled 381 adult PWH with a history of joint pain/bleeding and included 5 PROs and a clinical joint evaluation (Hemophilia Joint Health Score v2.1 [HJHS]). RESULTS: Median age was 34 years; 49.9% reported a history of joint procedure or surgery. On EQ-5D-5L, most reported problems with mobility (61.4%), usual activities (53.2%) and pain/discomfort (76.1%). On Brief Pain Inventory v2 Short Form, median worst pain (range 0-10) was 6, least pain 1, average pain 3 and current pain 2. Ankles were most frequently reported as the most painful joints (37.4%), followed by knees (23.7%) and elbows (18.9%). On International Physical Activity Questionnaire, 51% reported no activity in the prior week. On SF-36v2 health survey, median subscores were worse for 4 physical health domains vs 4 mental health domains. Among Hemophilia Activities List domains (range 0 [worst]-100 [best]), functions of the legs (median, 66.7) and lying/sitting/kneeling/standing (median, 67.5) were most impacted and self-care least impacted (median, 100.0). On HJHS, ankle scores (median, 6.0; range, 0-40) were worse than elbow/knee scores (median, 4.0/4.0). Results were consistent across PROs/HJHS. CONCLUSION: Data demonstrate challenges of predominantly ankle/knee pain and lower extremity functional impairment in US adult PWH, affecting HRQoL across PROs/HJHS.
Authors: W Stromer; B Messerer; R Crevenna; S H Hemberger; B Jauk; R Schwarz; W Streif; K Thom; B Wagner; K Zwiauer; R Likar Journal: Schmerz Date: 2018-12 Impact factor: 1.107
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: Katharine Batt; Michael Recht; David L Cooper; Neeraj N Iyer; Christine L Kempton Journal: Patient Prefer Adherence Date: 2017-08-09 Impact factor: 2.711