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.

Is surveillance imaging in pediatric patients treated for localized rhabdomyosarcoma useful? The European experience

“…28,29 In addition, follow-up imaging also implies repetitive radiation exposure, mainly caused by chest radiographs, because local imaging is usually performed with MRI. [14][15][16] On the basis of our analyses, it appears that the risk of these potential side effects could be reduced by reducing the number of radiological examinations. [14][15][16] On the basis of our analyses, it appears that the risk of these potential side effects could be reduced by reducing the number of radiological examinations.…”

“…12,13 Furthermore, the repetitive surveillance imaging causes stress and anxiety for patients and parents. [14][15][16] On the basis of our analyses, it appears that the risk of these potential side effects could be reduced by reducing the number of radiological examinations.…”

“…[9][10][11] Furthermore, repetitive imaging is associated with substantial costs, could add additional radiation exposure, and often requires anesthesia. [14][15][16] The questionable survival benefit of current surveillance strategies and the potential adverse factors associated with surveillance emphasize the need for an assessment of the value of surveillance imaging. [14][15][16] The questionable survival benefit of current surveillance strategies and the potential adverse factors associated with surveillance emphasize the need for an assessment of the value of surveillance imaging.…”

“…12,13 Furthermore, frequent hospital visits could potentially cause psychological distress to patients and parents. [14][15][16] The questionable survival benefit of current surveillance strategies and the potential adverse factors associated with surveillance emphasize the need for an assessment of the value of surveillance imaging. In this international, multicenter, retrospective study, we aimed to evaluate the value of surveillance imaging by determining the method of detection of relapse and its impact on survival in a cohort of patients treated according to consecutive European pediatric protocols.…”

European guideline for imaging in paediatric and adolescent rhabdomyosarcoma — joint statement by the European Paediatric Soft Tissue Sarcoma Study Group, the Cooperative Weichteilsarkom Studiengruppe and the Oncology Task Force of the European Society of Paediatric Radiology

“…The appropriate choice of imaging modality, protocols and timing of each assessment should be optimised to provide all information needed to guide therapy and follow-up for each child. An imaging guideline should lead to optimal collection of essential information, in balance with induced stress, sequelae and costs, taking into account the child's age and developmental status [4], the psychosocial impact of investigations for the child and family [5,6], and the physical impacts of radiation exposure and those of supporting measures like sequential sedation [4].…”