Disease‐related distress among adults with haemophilia: A qualitative study

Abstract

Introduction Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these populations, disease‐specific distress is associated with health outcomes. Haemophilia‐related distress is less understood. Aim To identify qualitative features of haemophilia‐related distress among affected adults to ultimately inform the creation of a measurement tool. Methods Adults with haemophilia A or B associated with a large haemophilia treatment centre in the south‐eastern U.S. were recruited to participate in this qualitative study. Fifteen participants completed semi‐structured telephone interviews. Interviews lasted 1‐2 hours and explored experiences of distress related to various aspects of haemophilia. Interviews were audio taped, transcribed and coded using NVIVO, software for organizing, managing and analysing qualitative data. Coding was deductive and inductive, and the analysis was thematic. Results Haemophilia‐related distress was broadly related to feelings of isolation and vulnerability which incorporated health system factors, physical functioning, caretaker roles and psychological considerations. Specific features associated with haemophilia‐related distress included lack of trust in the knowledge of haemophilia and care provided by staff in community healthcare settings, concerns about the future such as health insurance access and ageing/disability, long‐standing feelings of being different from others and feeling like an outsider, treatment burdens and fear of acute bleeds. Protective factors included supportive relationships with family, friends and haemophilia care teams through which participants received practical and emotional support. Conclusion Features of haemophilia‐related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia.

Validation of a new instrument to measure disease‐related distress among patients with haemophilia

“….05 to .08 -acceptable; .08 to .1 -marginal, >.1-poor) and CFI/TLI ≥ .9. 25,26 Subsequent exploratory factor analysis (EFA) was conducted to determine whether a lower number of factors (1)(2)(3)(4)(5) and comprised mainly men (n = 114, 90.5%) with haemophilia A (n = 114, 90.5%) that self-identified as White race (n = 98, 77.8%) ( Table 1). Nearly half (48%, n = 60) had severe disease.…”

“….05 to .08 -acceptable; .08 to .1 -marginal, >.1-poor) and CFI/TLI ≥ .9. 25,26 Subsequent exploratory factor analysis (EFA) was conducted to determine whether a lower number of factors (1)(2)(3)(4)(5) would result in improved model fit using the same indices and cut-off criteria used for the CFA.…”

“…Based on the literature 6,11–13 and expert opinion, a conceptual model of distress consisting of 10 domains was developed (Figure 1). To explore specific aspects of haemophilia impacting distress, we undertook in‐depth qualitative interviews with PWH 3 . Data saturation was reached after 15 interviews.…”

“…To explore specific aspects of haemophilia impacting distress, we undertook in-depth qualitative interviews with PWH. 3 Data saturation was reached after 15 interviews. No new domains were identified, and the spiritual domain was removed from the model as this was not raised as a theme in interviews.…”

“…Distress is an unpleasant multifactorial experience that can exist independent of depression and anxiety 1 . Patients living with chronic disease may be especially susceptible to distress, provoked by the disease itself or other life factors 1–3 . Successful chronic disease management often requires regular planning and self‐care, and distress may lead to worsening disease and disease‐related complications if it impedes these activities.…”