Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma

Abstract

Purpose: Patients treated for rhabdomyosarcoma (RMS) or Ewing sarcoma (ES) are subject to extensive follow-up after completion of therapy. The aim of this follow-up is to monitor treatment side effects and to detect relapse in an early phase to improve prognosis after relapse. Little is known about parental emotional experiences during this period. We assessed the views and experiences of parents of children treated for RMS or ES on the follow-up examinations after completion of therapy. Methods: We conducted two focus group meetings and four semi-structured telephone interviews with parents of children treated for RMS or ES in Dutch pediatric oncology centers. Parents of children 0–5 years after end-of-therapy were invited via letters (response rate 31%) and via social media channels of “Dutch Childhood Association for Children and Parents” (VOKK). An inductive thematic approach was used to analyze the data. Results: In total, 12 parents (fathers, n = 3; mothers, n = 9) of 12 patients treated for RMS (n = 6) or ES (n = 6) participated. Median age at diagnosis for their children was 7.9 years and median time after end-of-treatment was 37 months. Four major themes were identified: content of follow-up, distress and anxiety, search for reassurance and hope, and interaction with others. Parents of children treated for RMS or ES report experiencing significant distress after completion of treatment. They report that their distress was decreased by adequate communication about content, timing, and reasoning behind follow-up. Conclusion: Physicians should pay attention to the needs of individual parents to reduce distress in the period after completion of therapy.