Skinner M, Chai-Adisaksopha C, Noone D, Curtis R, Frick N, Nichol M, O’Mahony B, Page D, Pastarnak A, Stonebraker J, Iorio A and the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Investigator Group. Part-Time Employment and Early Retirement In People With Severe Haemophilia: Insights From The PROBE Study. Poster Presentations #P204 Haemophilia. 2019;25(S1):35-188. https://doi.org/10.1111/hae.13666
Introduction
Despite treatment advances economic, social and educational barriers still remain for people with severe haemophilia. Contextual factors such as the lifetime impact of haemophilia on employment and overall work life are not well understood.
Methods
People with severe haemophilia A/B (PwSH) and controls with no bleeding disorder (NoBD) reporting working part-time or havingretired early due to their health were compared with those reporting working full-time. Patient Reported Outcome Burdens and Experiences (PROBE) Study data of 1008 participants age 18 and over from 21 countries were analyzed (550 PwSH, 458 NoBD). Descriptive statistics were used to present results as n (%), and odds ratio (95% CI) were calculated for the associations for participants with any health problems—use of mobility aids, use of pain medication, having acute or chronic pain, difficulties with activities of daily living and history of joint surgery—and assessed for their statistical significance.
Results
250 PwSH (45.5%) and 263 NoBD (57.4%) reported working full time. 86 PwSH (15.6%) and 80 NoBD (17.5%) reported working part-time. 27 of the 86 PwSH (31.4%) and 3 of the 80 NoBD (3.8%) reported working part-time due to health. 52 PwSH (9.5%) and 28 NoBD (6.1%) reported taking early retirement. 25 of the 52 PwSH (48.1%) and 1 of the 28 NoBD (3.6%) reported taking early retirement due to health. Association between reporting a health-related problem and working part-time or taking early retirement due to health were[n (%), Odds Ratio (95% CI), p-value]: use of mobility aids 77.7 (3.8-1645) 0.0005, having acute pain 41.2 (2-831.8) 0.01, use of pain medication 23 (2.05-258.1) 0.01, participants experiencing any health problems 22.5 (2-252.6) 0.01, having chronic pain 16.5 (1.5-179.2) 0.02, difficulty with activities of daily living (ADL) 16.5 (1.5-179.2) 0.02, and history of joint surgery 7.3 (0.4-148) 0.197. Mean participant age: PwSH 39 (14.4 SD) and NoBD 45.3 (13.7 SD).
Discussion/Conclusion
Haemophilia has a significant negative impact on work life. PwSH report a higher rate of retiring early or working part-time due to health than age-matched controls. Use of mobility aids, acute / chronic pain, difficulty with ADL and history of joint surgery are associated with retiring early or working part-time. The lifetime impact of haemophilia on employment should be more fully considered within health technology assessments.
Disclosure of Interest
M. Skinner Grant/Research support from: PROBE is an independent investigator led research project with grant / research support from: Baxalta, now part of Shire; Bayer; Bioverativ, a Sanofi Company; CSLBehring; Novo Nordisk, Roche and Sobi and the collaboration of the US National Hemophilia Foundation., C. Chai-Adisaksopha: None Declared, D. Noone: None Declared, R. Curtis: None Declared, N. Frick: None Declared, M. Nichol: None Declared, B. O’Mahony: None Declared, D. Page: None Declared, A. Pastarnak: None Declared, J. Stonebraker: None Declared, A. Iorio: None Declared
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