Summary In low-income and middle-income countries, an excess in treatment failure for children with cancer usually results from misdiagnosis, inadequate access to treatment, death from toxicity, treatment abandonment, and relapse. The My Child Matters programme of the Sanofi Espoir Foundation has funded 55 paediatric cancer projects in low-income and middle-income countries over 10 years. We assessed the impact of the projects in these regions by using baseline assessments that were done in 2006. Based on these data, estimated 5-year survival in 2016 increased by a median of 5·1%, ranging from −1·5% in Venezuela to 17·5% in Ukraine. Of the 26 861 children per year who develop cancer in the ten index countries with My Child Matters projects that were evaluated in 2006, an estimated additional 1343 children can now expect an increase in survival outcome. For example, in Paraguay, a network of paediatric oncology satellite clinics was established and scaled up to a national level and has managed 884 patients since initiation in 2006. Additionally, the African Retinoblastoma Network was scaled up from a demonstration project in Mali to a network of retinoblastoma referral centres in five sub-Saharan African countries, and the African School of Paediatric Oncology has trained 42 physicians and 100 nurses from 16 countries. The My Child Matters programme has catalysed improvements in cancer care and has complemented the efforts of government, civil society, and the private sector to sustain and scale improvements in health care to a national level. Key elements of successful interventions include strong and sustained local leadership, community engagement, international engagement, and capacity building and support from government.

The My Child Matters programme: effect of public–private partnerships on paediatric cancer care in low-income and middle-income countries

Background 
Treatment abandonment (TxA) is recognized as a leading cause of treatment failure for children with cancer in low-and-middle-income countries (LMC). However, its global frequency and burden have remained elusive due to lack of global data. This study aimed to obtain an estimate using survey and population data.


Methods 
Childhood cancer clinicians (medical oncologists, surgeons, and radiation therapists), nurses, social workers, and psychologists involved in care of children with cancer were approached through an online survey February-May 2012. Incidence and population data were obtained from public sources. Descriptive, univariable, and multivariable analyses were conducted.


Results 
602 responses from 101 countries were obtained from physicians (84%), practicing pediatric hematology/oncology (83%) in general or children’s hospitals (79%). Results suggested, 23,854 (15%) of 155,088 children 6% were outside the capital. Lower national income category, higher reliance on out-of-pocket payments, and high prevalence of economic hardship at the center were independent contextual predictors for TxA ≥6% (p<0.001). Global survival data available for more developed and less developed regions suggests TxA may account for at least a third of the survival gap between HIC and LMC.


Conclusion 
Results show TxA is prevalent (compromising cancer survival for 1 in 7 children globally), confirm the suspected high burden of TxA in LMC, and illustrate the negative impact of poverty on its occurrence. The present estimates may appear small compared to the global burden of child death from malnutrition and infection (measured in millions). However, absolute numbers suggest the burden of TxA in LMC is nearly equivalent to annually losing all kids diagnosed with cancer in HIC just to TxA, without even considering deaths from disease progression, relapse or toxicity–the main causes of childhood cancer mortality in HIC. Results document the importance of monitoring and addressing TxA as part of childhood cancer outcomes in at-risk settings.

/pdf/magnitude-of-treatment-abandonment-in-childhood-cancer-2vyx5qffhj.pdf

Magnitude of Treatment Abandonment in Childhood Cancer.

The dying and death of a child has been portrayed (exploited?) widely in the written and visual arts. Sir Luke Fildes's The Doctor must hang on many more walls than mine. Who could have remained indifferent to the images of child suffering and death that we saw in newspapers and on the television during the recent conflict in Iraq? The philosophical and theological problem of suffering repeatedly demands attention when such dreadfulness is before our eyes. Although many religious, redemptive and secular explanations and rationalizations are offered, I see it as a matter whose resolution is so personal and experiential that it becomes part of our individual Weltschmerz. The outlook of dying persons and those who care for them may be so removed from the understandings, feelings and ambitions of their health attendants as to create a scarcely bridgeable gap. There may not even be an agreement on names. Recall this masterly exchange in Brideshead Revisited when Lord Marchmain's mistress describes his final illness:

‘What is it?’

‘His heart; some long word at the heart. He is dying of a long word.’

Has this separation contributed to the neglect of what is in truth a central element of medical care? The doctor treating a patient of any age has a responsibility to give as high quality care at the end of the disease's journey as at the start. The modern view is that this task should be shared with other groups who can offer spiritual and social help, and that patient and carers should participate as fully as possible.

When Children Die is a report into end-of-life care of children in the USA. The detail will be of most value to American readers but its emphasis on principles of child and family centred care gives it a universal message. The strong ethical and legal grounding and the importance attached to research and audit are impressive. The authors caution rightly against sanctifying clinical protocols in a way that leads to their unthinking use. At the end of my life, heaven defend me from healthcare workers who follow protocols to the letter: the hallmark of professionals is their ability to use judgment within the breadth of good practice and conventions of consent. Nor should the care of terminally ill patients become a narrow craft, practised only by the cognoscenti whose mysterious arts are closed to outsiders. Its principles should be part of the repertoire of any physician who deals with mortal illnesses. Back to Waugh and The Loved One: it would be calamitous if the palliative care and hospice movements for adults and children became so precious and unworldly that they were as soft a target for parody as Forest Lawn.

Primary-care trust chief executives, please use this vademecum to inform your commissioning of services for the sickest of children and most desolate of parents. You will not have many, but be generous to these few, giving them the scope and quality of care that you would expect for your own children. And let us remember that for families in the wider world the experience is no different from ours. Whether the process is drawn out and enervating or quick, brutal and unexpectedly devastating, the disparity in societies' willingness and ability to respond to human tragedy is deplorable. Whatever the circumstances, a dying child deserves competence, respect, compassion, tenderness and silent tears.

When Children Die: Improving Palliative and End-of-Life care for Children and their Families

CONTEXT: Refusal of treatment for childhood cancer engenders much discussion. No systematic study of this phenomenon exists in countries where access to treatment is readily available. OBJECTIVE: To identify and describe all published cases of treatment refusal for childhood cancer in the contemporary era. DATA SOURCES: We searched PubMed, Cumulative Index to Nursing and Allied Health Literature, Scopus, LexisNexis Academic, personal database, and secondary bibliographies. STUDY SELECTION: Eligible studies included at least 1 child DATA EXTRACTION: Cases were analyzed with respect to key features, including demographics, rationale for refusal, legal action, and medical outcome; data were combined for multiple publications discussing the same case. RESULTS: Of 4342 unique publications identified, 579 were eligible after screening; 96 scholarly articles and 19 judicial opinions addressed 73 unique cases of treatment refusal. Most cases occurred in the United States. Rationales for refusal were broadly grouped into 4 categories. Fifty-one cases (70%) involved legal action at the time of refusal. Legal action did not reliably predict survival. Publication bias and missing data, especially for cases without legal action, were limitations. CONCLUSIONS: We identified important gaps in the literature, including the significant variation in approaches and lack of consensus regarding the prognostic threshold necessary for compelling treatment and the absence of voices of children and adolescents who have received treatment over their families’ objections. More research reporting effective strategies for working with families who refuse is needed.

https://pediatrics.aappublications.org/content/pediatrics/early/2017/11/14/peds.2017-1951.full.pdf

Refusal of Treatment of Childhood Cancer: A Systematic Review

The Power of Reiki: Feasibility and Efficacy of Reducing Pain in Children With Cancer Undergoing Hematopoietic Stem Cell Transplantation.

Background
Complementary and alternative medicine (CAM) is applied both to children and adults widely throughout the world. A previous pan-European survey showed a surprisingly high CAM-use in Turkish children. This review aimed to survey information on the use of CAM in pediatrics in Turkey.

http://wjpch.com/uploadfile/002 13-325.pdf

Complementary and alternative medicine in pediatrics in Turkey

Although the popularity of complementary and alternative medicine (CAM) has risen in the last decade, information about its use by pediatric patients in palliative care is still scarce. The purpose of the study was to assess the frequency and types of CAM administered by parents with children suffering from cancer during the palliative phase. All parents who lost their child due to cancer in the federal state North Rhine Westfalia/Germany were eligible for the study. The first group of eligible parents was contacted in 1999–2000 and a second group of parents in 2005–2006. Upon agreement, parents were asked to complete a semi-structured questionnaire about the frequency of CAM use and the specific treatments that had been used. The types of CAM were categorized according to the National Center for Complementary and Alternative Medicine (NCCAM). A total of 96 parents participated in the study (48 in each cohort). Forty-three percent of all parents in both groups reported CAM use. The results show an increase of CAM use from 38 % in the first group to 49 % in the second cohort of pediatric patients during palliative care. The most common types of CAM used in both groups were homeopathy and treatment with mistletoe preparations. The study provides information about usage of CAM in children suffering from cancer during the palliative phase of the disease. Further research is required to investigate benefits, potential adverse effects, and the potential efficacy of CAM in this population.

Use of complementary and alternative medicine by pediatric oncology patients during palliative care

Background

In Germany, about 1,800 new cases of pediatric cancer under 15 years of age are diagnosed each year and survival rates approach 80%. Although treatment is covered by health insurance and is thus available for all patients at no cost, treatment refusal and treatment discontinuation have been observed. However, no data providing numbers and outcomes for developed countries have been published thus far.



Procedure

A questionnaire-based survey was performed among German pediatric oncology centers to ascertain the number of treatment refusals among pediatric patients who were diagnosed between January 2008 and December 2009 in Germany.



Results

Questionnaires from 70 of 73 centers were available, and of these 13 centers reported a total of 15 cases of treatment refusal or discontinuation within this 2-year period. Five of the 15 patients died, 7 of 15 were still alive, and the current status of 3 of 15 patients was unknown. Diseases were heterogeneous. Six of the 15 parents refused treatment for their children initially, 8 of 15 discontinued during the course of treatment. Five patients were treated after parental custody had been withdrawn due to the lack of compliance. All these five patients survived. Parents’ reasons given for refusal or discontinuation of treatment were related to personal health beliefs and coping strategies.



Conclusions

Although treatment refusal or discontinuation is rare, it is accompanied by a high mortality rate. Parents’ personal health beliefs play a primary role in treatment refusal or discontinuation in Germany. This emphasizes the importance of sustaining a functioning and mutually communicative physician–parent–patient relationship.

Contributing factors and outcomes of treatment refusal in pediatric oncology in Germany.

Complementary and alternative therapies are often used in paediatric oncology to complement children’s conventional cancer treatments. In rare cases, they may also be used as an alternative to conventional therapy. There are published studies from several parts of the world analysing different aspects of CAM use in paediatric cancer patients. The main issues examined are:

CAM Use in Pediatric Oncology: What Do We Know in the Year 2012?

As use of complementary and alternative medicine (CAM) is becoming increasingly popular among patients, we need to take a new look at how we are educating our future doctors. Opinions on integration of CAM courses into the main curriculum at medical faculties differ. In this chapter, we would like to discuss various aspects of this issue. Starting with the question of why CAM should be taught at medical schools, in the first section, we briefly outline the current usage of CAM among patients and then look at CAM from the physician’s point of view. How do physicians view the increasing popularity of CAM among patients and how do they deal with it? Do physicians integrate CAM into their regular practice? Do they wish for more training on CAM topics? We then go on to describe the current situation of CAM education in Europe. This section includes reports on how CAM is viewed at universities or medical faculties as well as a paragraph about possible reasons for the slow progress in integrating CAM into medical curricula in Europe. In the next section, we look at the content that should be taught and possible ways of integrating it into the medical curriculum. The final section describes the “Integrated Curriculum for Anthroposophic Medicine” (ICURAM) at the University of Witten/Herdecke in Germany as an example of successful integration of CAM into the medical education of students at a German university.

Medical Education in Complementary and Alternative Medicine (CAM): A European Perspective

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