Long Wait Times Between Referral and Interdisciplinary Pediatric Chronic Pain Evaluation

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Patients and their parents were interviewed and asked to fill out online questionnaires regarding their experience between referral and time of appointment.
Patients and their parents were interviewed and asked to fill out online questionnaires regarding their experience between referral and time of appointment.

For adolescents with chronic pain, wait times after referral for evaluation at an interdisciplinary pain clinic were found to be long, and to be associated with anxious anticipation and frustration from families, according to a study in the Journal of Pain.

Adolescents between the ages of 10 and 18 (mean age, 14.8 years) who were referred to a tertiary pediatric pain clinic at Seattle Children's Hospital, were on the waitlist for a pain clinic appointment, and who had not been diagnosed with a developmental delay were included in the analysis (n=97). Patients and their parents were interviewed and asked to fill out online questionnaires regarding their experience between referral and time of appointment.

Questionnaires were completed at baseline and at 4, 8, and 12 weeks after enrollment. At all follow-up appointments, study participants were asked to fill out the Patient-Reported Outcomes Measurement Information System (PROMIS)-25 Profile (v1.1) which assesses physical, mental, and social health. They were also asked about household income, educational level, race, sex, and ethnicity. Patients reported pain intensity on a 10-point numeric rating scale at baseline, and the primary location of pain and pain onset were reported using a multiple-choice questionnaire and open-ended questions, respectively.

The average wait time from first referral to new patient appointment was 197.5 days (range, 69-758 days). The majority of participants (n=61) were not seen until after the 12-week study period. Only 13, 12, and 11 patients were seen at 4 weeks, 8 weeks, and 12 weeks after enrollment, respectively. The pain intensity trajectory noticeably dropped at 4 weeks and 12 weeks but had a large rebound at 8 weeks.

In addition, a trend toward increased depression was observed at 12 weeks. Patients and parents reported frustration in having to wait for their appointment and patients described difficulties in handling their pain during the waiting process. Parents reported anticipation and hopefulness while waiting for their child's appointment.

Limitations of the study include the reliance on self-reports, the short follow-up, the small number of participants, and the inclusion of patients from a single center.

“[O]ur findings add to the existing literature demonstrating that children and adolescents have a high burden of symptoms throughout long waiting periods to be seen for interdisciplinary pain clinic evaluation. Lengthy wait periods suggest a pressing need for improved access to pain treatment facilities for children and adolescents with chronic pain,” concluded the study authors.

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Reference

Palermo TM, Slack M, Zhou C, Aaron R, Fisher E, Rodriguez S. Waiting for a pediatric chronic pain clinic evaluation: A prospective study characterizing waiting times and symptom trajectories [published online October 3, 2018]. J Pain. doi: 10.1016/j.jpain.2018.09.009

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