Although complementary and alternative medicine (CAM) is widely used in the pediatric population, research on the use of these therapies in the pediatric oncology population is of mixed quality. In this multicenter survey, we investigated the prevalence of CAM use, possible determinants of use, and parental attitude towards communication and research on CAM therapies. The prevalence of CAM use in the past 12 months was assessed by using a questionnaire based on the European guidelines on CAM research, filled out by parents of children visiting pediatric oncology outpatient clinics of six academic hospitals in the Netherlands. The questionnaire consisted of 26 questions on the child's clinical status, CAM use, and attitude towards communication and research on CAM therapies. One hundred and twenty-two of 288 respondents (42.4 %) reported CAM use. The most frequently used categories were homeopathy (18.8 %) and dietary supplements (11.5 %). Female gender and parental CAM use were significant predictors for the use of CAM (p < 0.001). Only one third of the parents had discussed CAM use with their pediatric oncologist. More than 80 % of the respondents identified a need for information about CAM from their pediatrician and 85.7 % was positive towards research on CAM. Half of the parents were interested in participating in future CAM trials. Conclusion, with more than 40 % of parents of Dutch pediatric oncology patients providing complementary and alternative medicine to their child and with lacking evidence on efficacy and safety of most CAM modalities, there is a clear need for high-quality research in this field. This study shows that most parents have an open attitude towards CAM research and that almost half of the parents would consider participating in future CAM trials, paving the way for research on CAM and aiming for its evidence-based use in pediatric oncology.
PurposeIntensive therapies in pediatric malignancies increased survival rates but also occurrence of treatment-related morbidities. Therefore, supportive care fulfills an increasingly important role. In planning development of guidelines with incorporation of shared decision making, we noticed that little is known about the needs and preferences of patients and their parents. Our goals were therefore to investigate (1) which supportive care topics patients and parents regard as most important and (2) the preferred role they wish to fulfill in decision making.MethodsThis qualitative study consisted of three focus groups (two traditional, one online) with patients and parents of two Dutch pediatric oncology centers. Data were transcribed as simple verbatim and analyzed using thematic analysis.ResultsEleven adolescent patients and 18 parents shared detailed views on various aspects of supportive care. Themes of major importance were communication between patient and physician (commitment, accessibility, proactive attitude of physicians), well-timed provision of information, and the suitability and accessibility of psychosocial care. In contrast to prioritized supportive care topics by medical professionals, somatic issues (e.g., febrile neutropenia) were infrequently addressed. Patients and parents preferred to be actively involved in decision making in selected topics, such as choice of analgesics and anti-emetics, but not in, e.g., choice of antibiotics.ConclusionsChildren with cancer and parents were provided a valuable insight into their views regarding supportive care and shared decision making. These results have important implications towards improving supportive care, both in selecting topics for guideline development and incorporating preferences of patients and parents herein.Electronic supplementary materialThe online version of this article (doi:10.1007/s00520-017-3723-7) contains supplementary material, which is available to authorized users.
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.
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