CLINICAL NEWS
Characterizing Patient-Reported Pain Management Strategies
for Hemophilia
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 patientreported 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%), ondemand (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.” ●
REFERENCE
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.
Women With Clotting Factor Deficiencies Have Similar Excess Bleeding
Risk, Regardless of Factor Levels
Women who have or are carriers for factor
VIII (FVIII) or factor IX (FIX) deficiency
often report excessive bleeding, though
it is unclear how bleeding risk may vary
among females with different factor levels
and those with type 1 von Willebrand
disease (vWD).
“Hemophilia A and B carriers with
normal factor levels are at risk for excessive bleeding, regardless of their factor
level, and warrant evaluation by a hematologist,” Robert F. Sidonio Jr., MD, from
Emory University in Atlanta, Georgia, and
lead author of the study, told ASH Clinical News. “Our objective was to further
characterize the bleeding tendencies in
hemophilia A and B carriers and females
with type 1 vWD enrolled in a large national dataset.”
Using data from the Universal Data Collection (UDC) project, which was created to
monitor bleeding events among women with
inherited bleeding di