Waiting for Pediatric Chronic Pain Clinic Evaluation: A Prospective Study Characterizing Waiting Times and Symptom Trajectories

Palermo TM, Slack M, Zhou C, et al. J Pain 2018 Oct 3. [Epub ahead of print]

Reviewed by Sabine Kost-Byerly, MD
Director, Pediatric Pain Management,
Director, Multi-disciplinary Pediatric Pain Clinic, Kennedy Krieger Institute
Associate Professor of Anesthesiology and Critical Care Medicine,
Johns Hopkins University School of Medicine
Baltimore, Maryland

The number of interdisciplinary pediatric pain clinics is limited, prolonging times between patient referral and actual assessment. Studies in adults waiting for clinic evaluations suggest worsening of symptoms and quality of life during these periods.  A task force of the International Association of the Study of Pain (IASP) thus recommended patients with chronic pain should be seen within 8 weeks. The goal of this study was to elucidate wait list time and longitudinal trends in pain and health in an adolescent population.  

This single center study in a US-based interdisciplinary pediatric pain clinic examined wait times, patterns of pain intensity and physical, mental and social health over a 12-weeks period on the wait list. Patients between the ages of 10-18 years and their parents completed separate online PROMIS-25 Profile questionnaires at four different times, initially at baseline and then spaced at four-week intervals. Six domains including physical function-mobility, anxiety/fear, depressive symptoms, fatigue, peer relationships, and pain interference were assessed in the Profile.  In addition, 12 randomly selected families completed qualitative assessments of patient and parent perspectives of their experience during the wait time. 

Ninety-seven out of 246 adolescents on the wait list were found to be eligible, could be contacted successfully, and were enrolled.  At baseline, patients reported elevated scores for pain interference and mobility compared to normative data.  More than 80% of the patients had elevated scores on at least one PROMIS subscale and most continued to do so at 12 weeks of follow-up. A majority of patients (87%) were seen within one year. Average wait time was 197 (range 69-758) days. Pain intensity trajectory was very variable with significant decreases (T2, T4) and rebound (T3). Except for an improvement in pain interference scores at 12 weeks compared to baseline, no significant changes were observed in other PROMIS subscales.  Major themes in the qualitative interviews were frustration/anxiety, anticipation/hopefulness and adapting.

Wait times before clinic assessments were long. Even the shortest time in the range exceeded the IASP recommendation of 8 weeks. (The authors do not address the astonishing upper range of 758 days. More than two years!)  Even though pain interference diminished over the course of the 12 weeks, symptom burden remained high. Worsening of symptoms and quality of life as described in adults was not observed in adolescents in this single center study.  Other factors limiting generalization of the findings were the study’s homogenous population (81% Caucasian), higher household incomes (74% > $50K), and potential placebo effect from study participation. 

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