Clinical attributes and treatment characteristics are associated with work productivity and activity impairment in people with severe haemophilia A

Abstract

Introduction Few studies have examined the real‐world impact of haemophilia on daily activities and work productivity in people with severe haemophilia A (PWSHA). Aim To determine clinical attributes and treatment characteristics associated with impairment in daily activities and work among PWSHA using the patient‐reported Work Productivity and Activity Impairment‐General Health Questionnaire (WPAI‐GH). Methods PWSHA were asked to complete the WPAI‐GH as part of the Cost of Haemophilia in Europe: A Socioeconomic Survey (CHESS) study. Outcomes were determined for activity impairment (AI), absenteeism, presenteeism and overall work productivity loss (WPL). Descriptive statistics and regression analyses were used to evaluate the association between these outcomes and clinical and treatment attributes. Results Overall, 376 participants completed the AI element of WPAI‐GH; 175 were employed and thus also reported on work impact. Mean ± standard deviation scores were as follows: AI = 34.2% ± 25.8%; absenteeism = 0.06% ±0.2%; presenteeism = 26.8% ± 22.4%; WPL = 28.6% ± 24.0%. Increased AI and WPL were associated with high haemophilia‐related morbidity, measured both as chronic pain (p < .001 for both) and joint synovitis (AI: p <0.001; WPL: p = .017). In descriptive and multivariate analyses, lifelong prophylaxis was associated with reduced AI (p < .001 and p = .031, respectively); high therapy adherence was associated with reduced AI (p = .001 and p = .012, respectively) and with reduced WPL (p < .001 and p = .012, respectively). Conclusion The WPAI‐GH identified haemophilia‐related morbidity and treatment characteristics, including therapy regimen and adherence, as key attributes impacting functional impairment and work contributions of PWSHA. Early prophylactic intervention and greater adherence to therapy may lead to lower AI and WPL in PWSHA.

Cross‐sectional study evaluating the association of haemophilia‐related distress and clinically relevant outcomes

“…For most, it requires a high‐level of engagement by the patient and the healthcare staff. In another cross‐sectional study, the presence of a reported target joint was associated with a poorer quality of life as shown by a lower mean EQ‐5D index score (.731 vs. .875) 14 . In the current study, haemophilia‐related distress was not independently associated with the presence of a target joint.…”

“…In another cross-sectional study, the presence of a reported target joint was associated with a poorer quality of life as shown by a lower mean EQ-5D index score (.731 vs. .875). 14 In the current study, haemophilia-related distress was not independently associated with the presence of a target joint. However, those with public insurance had a 4.86 greater odds of having a target joint than those with private insurance, after controlling for other variables.…”

“…In a study by O'Hara et al work impairment was associated with pain and inversely associated with therapy adherence. 14 Although adherence, pain, and target joints are all distinct constructs, they are linked and likely align in a causal relationship with work impairment. Specifically, poor adherence leads to bleeding which leads to pain and reduction in engagement with work.…”

Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study

“… 16 Among persons with severe hemophilia A in five European countries, lifelong prophylaxis and high therapy adherence led to reduced activity impairment and work productivity loss, whereas frequent bleeds and pain were associated with increased activity impairment and work productivity loss. 17 …”

“…16 Among persons with severe hemophilia A in five European countries, lifelong prophylaxis and high therapy adherence led to reduced activity impairment and work productivity loss, whereas frequent bleeds and pain were associated with increased activity impairment and work productivity loss. 17 Few studies have examined the "gap" in socioeconomic participation between persons with different severities of hemophilia and the general population. Furthermore, participation outcomes are often not reported in a standardized manner (i.e., Results: Data from 906 adults and children were analyzed.…”