Physician, patient, and caregiver support for a formal certification in pediatric neuro-oncology: A survey-based report from the SNO pediatrics working group

Abstract

Background Although CNS tumors are the most common pediatric cancer in the U.S., most physicians caring for these patients are not formally certified in the subspecialty. To determine support for developing a formal certification process in pediatric neuro-oncology, the Society for Neuro-Oncology’s Pediatrics Special Interest Track Training and Credentialing working group performed a cross-sectional survey-based study of physicians and patients/caregivers of children with a CNS tumor history. Methods Surveys were built in Survey Monkey and were available for 3 months. The physician survey was 34 questions and was open to doctors currently caring for pediatric neuro-oncology patients. The patient/caregiver survey was 13 questions. Both surveys were completed anonymously. Results The physician survey was completed by 193 subjects, the majority of which self-identified as oncologists. Only 5.6% of survey participants had ever been board certified in neuro-oncology; the majority of participating physicians were either unaware that this certification existed or thought they were not eligible due to training in pediatrics rather than neurology or internal medicine. Almost half of the self-identified pediatric neuro-oncologists had not completed any specific clinical neuro-oncology training. Over 75% of physicians were supportive of the implementation of a formal certification process in pediatric neuro-oncology. 30 subjects completed the patient/caregiver survey. Although the majority of survey participants were highly satisfied with their oncologist, 70% would have been more comfortable if their oncologist had been specifically certified in pediatric neuro-oncology. Conclusions There is support from physicians, patients, and caregivers to establish a formal certification process in pediatric neuro-oncology.

Perspectives from neuro-oncology providers on patient access to electronic records: a survey study

“…To keep the survey short and anonymous, we did not collect additional provider characteristics such as their specific role and years of practice. Our study sample is small and we were unable to include an accurate response rate, although this is in the context of less than 300 board-certified neuro-oncologists in the USA, and we were able to gather responses from all major regions [ 18 ]. In addition, there is subjectivity in the definition of certain terms in the survey for the responders, such as ‘significant amount of time or distress’ or ‘benign’, so their perceptions may vary, and we did not include a qualitative tool to adjust that or in-depth interviews to explore those concepts.…”