Adolescent and caregiver clinical encounters with healthcare providers during their diagnostic journey with chronic musculoskeletal pain: implications for pediatric rheumatology

To explore perspectives of adolescents with chronic musculoskeletal pain and their caregivers regarding clinical encounters with healthcare providers during their diagnostic journey with implications for pediatric rheumatology. We conducted a secondary qualitative analysis of data from the Journey in Pain Care study. Semi-structured interviews were performed with 15 adolescent-caregiver dyads recruited from the Stanford Pediatric Pain Clinic. Participants included adolescents (ages 11–18) with chronic musculoskeletal pain who had rheumatology consultations during their care journey, along with one caregiver each. Interviews explored diagnostic processes, care team interactions, and meaningful moments in the diagnostic process. Data were analyzed using qualitative content analysis. Four themes were developed in the adolescent and caregiver interviews about their clinical encounters with providers during the diagnostic process: (1) Acknowledgement of Pain is Validating (based on subthemes Pain Disbelief from Providers and Acknowledgement of Pain Regardless of Diagnosis); (2) Lack of Communication Is Dismissive and Uncaring (based on subthemes Impersonal Diagnostic Process, and Passed Around Without Explanation); (3) Inclusion Strengthens Trust In The Process (based on subthemes Listen & Provide Information and Demonstrate Engagement & Commitment to Answers); and (4) Perceiving Whole Persons Rather Than Diagnostic Puzzles (based on subthemes Dehumanization In Diagnostic Uncertainty and Whole Person Approach). Adolescents with chronic musculoskeletal pain often experience clinical encounters with providers at the intersection of pain disbelief and diagnostic uncertainty. Pediatric rheumatologists can improve care by validating pain experiences, maintaining transparent communication about uncertainty and the diagnostic process, involving adolescents in decision-making, and adopting personalized, relational approaches that acknowledge patients’ humanity beyond their symptoms. To our knowledge, this is the first qualitative study to characterize pediatric rheumatology as a clinical juncture at the intersection of pain disbelief and diagnostic uncertainty in the US, dynamics that may reinforce one another and shape adolescents’ and caregivers’ experiences of care. Using dyadic semi-structured interviews with 15 adolescent–caregiver pairs, we identify four distinct themes from clinical encounters that impact the diagnostic process (1) Acknowledgement of Pain is Validating (2) Lack of Communication Is Dismissive and Uncaring (3) Inclusion Strengthens Trust in the Process and (4) Perceiving Whole Persons Rather Than Diagnostic Puzzles. Findings translate directly into actionable strategies for pediatric rheumatologists helping patients at the intersection of pain disbelief and diagnostic uncertainty, including validating pain regardless of diagnostic clarity, communicating transparently about uncertainty and the diagnostic process, involving adolescents in decision-making, and engaging patients as whole persons not a diagnostic mystery. By centering both adolescent and caregiver perspectives, this work provides a foundation for developing interventions to enhance clinical encounters for patients with chronic musculoskeletal pain in pediatric rheumatology practice.