Background & Aims
Up to 43% of school aged children in the United States report recurrent or chronic pain and results in significant personal, societal and health care costs. The primary objective of this study was to assess the demographics and describe characteristic profile, challenges and needs of the of pediatric chronic pain patients from their caregivers’ perspectives. This patient profile was intended to serve as a surrogate for evaluating the unique challenges, needs and desires of this vulnerable patient population and their caregivers.
Methods
An online survey was sent to 200 caregivers who participated in the US Pain Foundation’s Pediatric Pain Warrior program. The survey questions explored demographics, associated diagnoses, unique challenges, barriers to treatment needs and desires of these pediatric chronic pain patients and their caregivers.
Results
Response rate of 62%, showed most patients were 10-15 years (39.2%) and 16-20 years old (48.8%), 62% were female gender, 10.4 % transgender/non-conforming, 88% non-Hispanic whites. More than 70% patients reported daily pain scores > 5/10 and 54% of patients having spent >75% of their lifetime with chronic pain. Top pain diagnoses were Ehlers-Danlos Syndrome (65.5%), Headaches (65.5%), musculoskeletal pains, and abdominal pain, most patients with >3 pain diagnoses (76.8%). Reported barriers to access included; pain care being rendered by primary care physicians(68%), only 30% treated by a pain specialist, not believed by their provider(58%), lack of access to a knowledgeable provider(65%,) being told that provider could not do anything more for their pain(55%) and cost of treatment as a barrier to choosing desired treatment (60%) with 59% paying >$2500/year in self-pay. A third of patients needed hospitalizations for treatment of pain, 48% spending >7 days inpatient. Most patients had >3 prescription medications(72%). Desires include; more access to pain specialist (38%), massage therapist (32%), naturopath (29%), mental health providers (21%), more emphasis on non-medication options like restorative therapies(46%),Complementary/integrative therapies (43%) and Mind-body therapies.
Conclusions
Pediatric chronic pain is common and burdensome to the patients and families. Pediatric chronic pain patients lack access to trained healthcare professionals and appropriate treatments, with primary care physicians playing a pivotal role in pain care. A careful analysis of the burden of pediatric chronic pain, barriers to adequate and effective treatment modalities and investment into more investment into appropriate pharmacological and non-pharmacological treatments is needed.
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