Characterizing Pain in Pediatric Palliative Care Clinical Documentation (GP109)

Outcomes 1. Attendees will be able to identify the methods used to abstract and characterize pain from the electronic health record of children and adolescents with cancer receiving palliative care services.2. Attendees will be able to describe the trends in pain documentation across a cohort of children and adolescents with cancer receiving palliative care services. Key Message Pediatric palliative care teams can help to address complex pain care needs of children and adolescents with cancer. Our study evaluated documentation of pain characteristics in pediatric palliative care team clinical notes. While physical characteristics were commonly documented, pain's impact on well-being and daily living were less evident. Importance Although pain reporting and treatment among children and adolescents with cancer has improved, less focus has been on capturing pain characteristics to tailor pain care strategies. Clinical documentation by pediatric palliative care teams may provide valuable insights to evaluating multifaceted pain care needs of children with cancer. Objective(s) To characterize pediatric palliative clinicians’ documentation of pain characteristics among children and adolescents with cancer. Scientific Methods Utilized We retrospectively evaluated electronic health records of 115 pediatric oncology patients (61 males; 6-17 years, median 13 years) who initiated palliative care services at a children's hospital in the Intermountain West between October 2017-January 2021. Our team abstracted symptom care-related statements from 661 palliative care consultation and progress notes. We used content analysis with a modified coding scheme based on standards for pain outcome measures in pediatric pain clinical trials. We achieved K ≥.90 inter-rater reliability. Results The sample included 29 (25.2%) patients with Hispanic/Latino ethnicity, 13 (11.3%) who spoke a language other than English, and 56 (48.7%) who lived 35 miles or greater from the children's hospital. We coded 499 pain characteristics across 68 (59.1%) patients. The most frequently documented characteristic was location (56 patients, 165 statements), followed by severity (47 patients, 109 statements), and frequency (32 patients, 73 statements). Descriptions of pain type, physical/functional impact, and escalating factors were documented in less than 25% of patients. The influence of pain on the patient's overall well-being and social life was evident in less than 10% of patients. Conclusion(s) Pediatric palliative clinicians frequently documented physical pain characteristics for children with cancer, however evidence illustrating pain-related life impact was inconsistent. Impact Pain is a priority symptom for children and adolescents with cancer. The standards for pain outcome measures provide a useful framework for evaluating pediatric palliative care documentation and can guide future research.