Psychosocial Support for Pediatric Patients at Proton Therapy Institutions

Purpose: Pediatric patients with cancer benefit significantly from psychosocial support during and after treatment, but to date, limited data exist regarding the patterns of psychosocial support provided to patients in radiation oncology departments. The purpose of this study was to assess the supportive care services provided at proton therapy institutions in the United States with a specific focus on education, parental involvement, and coping techniques. Materials and methods: Physicians, nurses, and child life specialists at 29 operational proton therapy facilities in the United States were sent an online questionnaire regarding pediatric treatment support. The survey consisted of 10 questions exploring strategies employed to educate and support pediatric patients before and during radiotherapy. Results: Staff members from 23 of 29 operational proton centers (79%) in the United States completed the survey. Three centers (10%) declined to participate, and three (10%) did not complete the questionnaire. Respondents permitted parental presence for body positioning on the first day of treatment and every day of treatment if needed at 95.6% (22 of 23) and 73.9% (17 of 23) of the centers, respectively. Primary education methods included a facility tour (91.3%; 21 of 23) and psychological preparation (78.3%; 17 of 23). Physicians (82.6%; 19 of 23), nurses (73.9%; 17 of 23), and child life specialists (69.6%; 16 of 23) most commonly provided education to pediatric patients and their families. Only 21.7% (5 of 23) of the facilities reported documentation of a psychosocial support policy. Common coping techniques included music (87.0%; 20 of 23), parental presence for positioning (73.9%; 17 of 23), listening to audio recordings (73.9%; 17 of 23), aromatherapy on or near the patient (73.9%; 17 of 23), and use of a stress ball (65.2%; 15 of 23). Conclusion: Proton therapy institutions frequently offered psychologic preparation before treatment and employed various coping strategies. Based on this survey, we propose several recommendations to raise awareness and improve the experience of pediatric patients at radiation oncology centers. Keywords: coping; patient education; patient experience; psychosocial support; stress