Pain in the Bleeding Disorders Community: Patient and Caregiver Perspectives

Introduction:Pain negatively impacts individuals with bleeding disorders throughout their lives. Despite the high prevalence of pain in this population, the medical literature suggests that 40 to 60% of patients report that their pain is not well controlled. The bleeding disorders community has issued a call to confront this challenge through better prevention of bleeding and subsequent arthropathy and improved assessment and treatment of acute and chronic pain. Current efforts to address these issues lack input from patients and their caregivers (CGs) on how to prioritize specific elements of pain management for future quality improvement and research agendas. The Medical and Scientific Advisory Council of the National Hemophilia Foundation (NHF) created the Pain Initiative Task Force to address these shortcomings. This group aims to contribute to the national effort to improve pain management so that individuals with bleeding disorders can participate fully in their lives.

Aims: To better understand the unmet needs of the bleeding disorders community regarding the evaluation and management of acute and chronic pain, and to identify and evaluate outcomes important to patients with bleeding disorders and their caregivers.

Methods:We conducted a 1-hour session during the 2016 NHF Annual Meeting entitled "Pain in the Bleeding Disorders Community: A Call to Action." Attendance at the session was voluntary. We collected information from attendees using paper demographics forms, an electronic audience response system, and roundtable discussions. Discussion questions were presented to the group as a whole on pain types, methods of pain assessment, pain management, and perceived unmet needs. Participants were then divided into discussion groups based on whether they were a person with a bleeding disorder (PWBD) or a CG. Table discussions were moderated by a committee member who recorded field notes describing participant responses, topics of discussion, and general concerns expressed by the attendees.

Results:36 PWBD and their CGs attended the session (50% patients, 50% CGs). 64% reported having chronic pain. 84% said their pain was assessed using either the 0-10 verbal response scale or the FACES scale. Only 38% reported that their pain was assessed at every clinic visit. Pain was reported as being managed by hematologists (45%), primary care providers (11%), and pain specialists (4%), while 30% reported managing their pain without any healthcare provider input. Fear of addiction to opioid medications was reported by 24% of patients and 15% of CGs. Only 52% of PWBD felt that pain was managed "fairly well" or "very well." PWBD and CG identified problems related to pain assessment, including limitations of the 0-10 pain scale for measuring pain, inadequacy of assessing only currentpain levels, and lack of assessment of sleep problems, mental health issues, and physical function. In addition, CGs noted the absence of assessment of pain's impact on CGs and other family members of patients. Participants identified many areas of pain management that were important to them, including a need for more non-pharmacologic pain treatments and non-opioid pain medications, use of physical therapy to treat/prevent pain, better understanding of the challenges of recognizing and treating pain in children, and concerns about opioids: lack of efficacy, risk of tolerance/dependence/addiction, and provider reluctance to prescribe opioid medications. Participants also felt that more research was needed to understand the role of cannabis. Areas of unmet needs identified by the groups included improvement in pain management education for providers, PWBD, and CGs, expansion of hemophilia treatment center teams to include providers with expertise in pain, improved communication between providers, and more research on prevention and treatment of pain in the bleeding disorders population.

Conclusions:PWBD and caregivers identified limitations of the current healthcare delivery system and patient-valued unmet needs related to the assessment and management of pain in individuals with bleeding disorders. This information will serve to aid in prioritizing future quality improvement and research efforts to reduce the impact of pain in the bleeding disorders community.