Patients with hemophilia have to manage both bleeding issues, and the consequent joint pain that follows recurrent hemarthrosis. Regional and national U.S. surveys have suggested patients with congenital hemophilia use a variety of strategies to deal with their acute and chronic joint pain, and that clinical pain assessment tools are insufficient for developing better pain management programs.
At the 2016 THSNA Summit, Michelle Witkop, DNP, from Munson Medical Center in Traverse City, Michigan, and researchers presented results of the Pain, Functional Impairment, and Quality of Life (P-FiQ) Study, a patient-reported study on the prevalence, description, and management of pain in adult males with mild to severe hemophilia and a history of joint pain and/or bleeding.
A total of 381 patients completed a pain history survey and used five patient-reported outcome instruments that assessed pain, functional impairment, and quality of life. Assessments took place during comprehensive care visits.
The median patient age was 34 years; 77 percent had hemophilia A, 23 percent had hemophilia B, and 9 percent had inhibitors.
Other patient characteristics included:
- Some college or postgraduate education (61%)
- Employed (77%)
- Overweight or obese (65%)
- Arthritis/bone/joint problems (65%)
Patient-reported treatment regimens included continuous prophylaxis (44%), on-demand (38%), and “mostly on-demand” (19%) factor replacement.
“The study confirms the high prevalence of pain in the hemophilia community with little discrimination between chronic and acute pain descriptors,” Dr. Witkop told ASH Clinical News.
During the six months prior to the survey, only 15 percent of patients reported experiencing no pain; others reported chronic pain (34%), acute pain (20%), or both (32%). The most frequently reported and most painful joints included ankles (37%), knees (24%), and elbows (19%).
Interestingly, descriptions of acute pain and chronic pain were similar: Acute pain was described as sharp (77%), aching (65%), throbbing (58%), and shooting (54%), while chronic pain was described as aching (80%), nagging (50%), throbbing (45%), and sharp (39%).
The most common medications patients had taken in the six to eight hours prior to completing the survey were:
- routine use of factor or other hemophilia treatments (29%)
- prescription pain medications (28%)
- over-the-counter pain medications (17%)
- factor or other treatment for bleeding (11%)
- medications for depression (9%) or anxiety (7%)
The remaining 38 percent reported no medication use in that time period. “Despite high levels of both acute and chronic pain, we continue to see the high use of acetaminophen and low usage of opioids in this population,” Dr. Witkop said.
The most commonly used analgesics for pain management were acetaminophen (62% for acute pain and 55% for chronic pain) and non-steroidal anti-inflammatory drugs (34% and 49%). Non-phamarcologic strategies included: ice (65% and 33%); rest (51% and 33%); factor or bypassing agent (51% and 27%); elevation (41% and 28%); compression (33% and 21%); alcohol use (11% and 8%); and medical marijuana use (12% and 10%).
“Another pattern we consistently see is that, despite describing acute pain, patients are not using factor appropriately as a treatment strategy,” Dr. Witkop noted. “For acute pain related to recurrent bleeding, we would expect high factor use as a treatment strategy (tertiary prophylaxis), yet the participants reported using this strategy only 51 percent of the time. This leads us to believe they cannot truly differentiate between acute and chronic pain.”
Overall, these data highlight opportunities to improve clinical assessments and patient dialogue to better define and personalize pain and its associated pain triggers. “The findings of this study allow us to use multiple validated tools in this patient population,” Dr. Witkop said. “These tools will help us assess and develop personalized pain programs for our patients, as well as evaluate these programs on an individual as well as a systems level to better understand what may or may not be effective.”
Witkop M, Neff A, Buckner TW, et al. Self-reported prevalence, description, and management of pain in adult people with hemophilia (PWH) from the pain, functional impairment, and quality of life (P-FiQ) study. Abstract #54. Presented at the 3rd Annual Summit of the Thrombosis and Hemostasis Societies of North America, April 15, 2016; Chicago, Illinois.