De storm die kinderkanker heet

Bringing up a child with cancer is no sinecure. The parental role is challenged by an abundance of factors coming along with the diagnosis. Insight into these factors will contribute to a better understanding and care. By looking beyond the boundaries of their own discipline, health care professionals will be able to increase parental strength

High prevalence of complementary and alternative medicine use in the Dutch pediatric oncology population: a multicenter survey

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 oncolog

Sustaining innovation and improvement in the treatment of childhood cancer: lessons from high-income countries

Cancer in children and adolescents is rare and biologically very different from cancer in adults. It accounts for 1.4% of all cancers worldwide, although this proportion ranges from 0.5% in Europe to 4.8% in Africa, largely because of differences in age composition and life expectancy. In high-income countries, survival from childhood cancer has reached 80% through a continuous focus on the integration of clinical research into front-line care for nearly all children affected by malignant disease. However, further improvement must entail new biology-driven approaches, since optimisation of conventional treatments has in many cases reached its limits. In many instances, such approaches can only be achieved through international collaborative research, since rare cancers are being subdivided into increasingly smaller subgroups on the basis of their molecular characteristics. The long-term effect of anticancer treatment on quality of life must also be taken into account because more than one in 1000 adults in high-income countries are thought to be survivors of cancer in childhood or adolescence. The introduction of drugs that are less toxic and more targeted than those currently used necessitates a partnership between clinical and translational researchers, the pharmaceutical industry, drug regulators, and patients and their families. This therapeutic alliance will ensure that efforts are focused on the unmet clinical needs of young people with cancer. Most children with cancer live in low-income and middle-income countries, and these countries account for 94% of all deaths from cancer in people aged 0-14 years. The immediate priority for these children is to improve access to an affordable, best standard of care in each country. Every country should have a national cancer plan that recognises the unique demographic characteristics and care needs of young people with cancer. Centralisation of the complex components of treatment of these rare diseases is essential to improve survival, accelerate research, and train the future specialist workforce. Referral routes and care pathways must take account of the large geographical distances between many patients' homes and treatment centres, and the economic, cultural, and linguistic diversity of the populations served

Development of an evidence-based decision aid on complementary and alternative medicine (CAM) and pain for parents of children with cancer

Purpose: To develop an evidence-based decision aid for parents of children with cancer and to help guide them in the use ofcomplementary and alternative medicine (CAM) for cancer care. Methods: This study had a mixed research design. The needs of parents were investigated by survey and focus group. Asystematic review and meta-analysis were performed on the effectiveness of CAM using Grading of RecommendationsAssessment, Development and Evaluation (GRADE). Clinical experts were interviewed and a decision aid on CAM treatmentfor pain was developed. Results: Parents emphasized the importance of reliable information on CAM, focusing primarily on communication and a broadspectrum of complaints related to cancer treatment. The decision aid on CAM for pain included five modalities based on 11randomized control trials (RCTs): hypnotherapy, mind-body techniques, massage, healing touch, and music therapy. Metaanalysis could be performed on hypnotherapy, which significantly reduced cancer-related procedural pain compared withstandard care (MD, − 1.37; 95% CI, − 1.60, − 1.15; P &lt; 0.00001) and attention control (MD, − 1.13; 95% CI, − 1.34, − 0.94;P &lt; 0.00001), and massage, demonstrating no effect on pain compared with standard care (MD, − 0.77; 95% CI, − 1.82, 0.28;P = 0.15). Research evidence and supplementary information from clinical practice and patient were incorporated in a websitebased decision aid. Conclusions: An evidence-based decision aid was developed to support parents of children with cancer in making decisions aboutCAM for pain management. Next steps will be to expand the website to include additional childhood cancer-related complaintsand to evaluate its use in practiceThis article is distributed under the terms of the CreativeCommons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/)</p