There are many essential components to end-of-treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.

One in 10 young adults reported at least one instance of dismissed pain and half of these instances involved a parent or medical provider. Results suggest a lasting negative impact of perceived dismissal. Pain in adolescence is a complicated experience and the current study indicates that parents and physicians need further guidance on how best to respond to reports of pain.

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This study examined physician-generated pain dismissal experiences in adolescence between males and females. Young adults (ages 18-24, N = 178) with chronic or recurrent pain reported at least one pain dismissal experience in adolescence and answered a series of questions regarding the experience during this time period. Females were significantly more likely to report pain dismissal and a physician as the dismisser. Males were more likely to report that the dismisser expressed hostility toward them, feeling ambivalent regarding the dismissal experience, and a desire to avoid the dismisser. Females were more likely to report a desire to plead for understanding with the dismisser. Results suggest that female adolescents are more likely to report a pain dismissal experience with physicians, raising concerns that adolescent females may receive, or at least perceive, differential treatment for their chronic pain.

Despite the benefits of patient reported outcomes (PROs), the systematic use of PRO assessment in clinical care is rare. The goal of this pilot project was to examine the feasibility of PRO assessment via the Patient Reported Outcomes Measurement Information System-Computerized Adaptive Testing (PROMIS-CAT) within pediatric hematology, oncology, and bone marrow transplant (BMT) clinic settings. Fifty-one patients (ages 5 to 26 years), 53 parents, and 13 medical providers were recruited successfully. After patients and parents completed the PROMIS-CAT on electronic tablets, patients, parents, and medical providers completed questionnaires regarding acceptability, burden, and potential barriers with electronic PRO assessment within the clinic setting. The majority of patients (72%) and parents (70%) endorsed positive acceptability with completing the PROMIS-CAT. Patients and parents found the assessment easy to use and the questions understandable relative to the enjoyableness and helpfulness of the measure. Positive acceptability findings from the medical providers (25% satisfied) were lower than expected. Completion of electronic PRO assessment did not appear to add significant burden to patients, families, or the clinic workflow. Technological issues, comprehension of questions, and medical provider confusion with interpretation of the original score report of the PROMIS-CAT were identified as potential barriers with capturing PROs in the clinics. Overall, this study supports the feasibility of collecting PROs in real time in a clinic setting as patients, parents, and medical providers found the assessment acceptable and of low burden, and minimal barriers with the integration of PRO assessment within a clinic setting were identified.