Background/Purpose: Chronic pain in adolescence is a complex and significant medical condition, with a reported prevalence of 11-38%.¹ Pain amplification syndrome (PAS), which includes fibromyalgia, is a common chronic pain syndrome in adolescents characterized by allodynia without specific somatic injury or illness.² Physicians are often puzzled by pain reports that seem disproportionate to medical findings. As a result, the complaints of adolescents with chronic pain are often viewed with skepticism by others. This disbelief is a phenomenon referred to as pain-related stigma.³ Pain-related stigma has not been studied in adolescents with chronic pain. Pain-related stigma may account for poor health outcomes in this population, such as depression,⁴ anxiety,⁵ problems in school⁶ and social impairment.⁷ In the current study, we sought to evaluate pain-related stigma in adolescents with PAS using focus group methodology.

Methods: Five focus groups of 3-5 adolescents with PAS (N=18), ages 12-17, were conducted to evaluate the impact of, and reaction to, pain-related stigma. Patients were recruited from an outpatient pediatric pain management clinic. Patients with a comorbid chronic medical condition, such as juvenile idiopathic arthritis, were excluded to reduce the bias of other disease-related stigma. Using a semi-structured interview, we asked questions targeting stigma in an open-ended manner. Focus group length ranged from 36-106 minutes with a total of 363 responses. Transcripts were validated for accuracy and coded independently by two raters (90.34% agreement) who identified pain-related themes using grounded theory.

Results: Findings suggest evidence of pain-related stigma among medical providers, school staff, peers and family members. Adolescents described sources of the pain-related stigma as the invisibility of pain and diagnostic uncertainty. Additionally, several incidents of peer bullying were also described secondary to respondent references to having chronic pain. There is evidence that adolescents with chronic pain attempt to conceal their symptoms from others to avoid negative social interactions, and that they internalize their pain-related stigma experiences.

Conclusion: Our findings indicate that adolescents with PAS experience pain-related stigma among medical providers, peers, school personnel and family members. Disbelief of pain symptoms may be critical in understanding disease-related burden and social disruptions in this population. There are several potential clinical implications of pain-related stigma among adolescents with chronic pain, including healthcare utilization, poor health outcomes and quality of healthcare.

Acknowledgments: This research is supported by the National Institute of Arthritis and Musculoskeletal and Skin Disease of the National Institutes of Health under award number 1K23AR073934-01A1 and the Goldfarb Pain and Palliative Medicine Fund.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/itll-go-away-theres-nothing-wrong-with-you-the-experience-of-pain-related-stigma-among-adolescents-with-pain-amplification-syndrome/