Objectives: Pediatric cancer is a life-threatening disease that poses significant challenges to the life of all family members (diagnosed child, parents, siblings) and the family as a whole. To date, limited research has investigated family adjustment when facing pediatric cancer. The aim of the current longitudinal study was to explore the predictive role of protective factors at the individual (parental psychological flexibility), intrafamilial (dyadic coping) and contextual level (network support) in explaining family adjustment as perceived by (...) parents of children with leukemia or non-Hodgkin lymphoma. In addition, we were interested to see whether these protective factors could be predictive for family adjustment at a later time point. Method: Participants were 70 mothers and 53 fathers (80 families) of children with leukemia or non-Hodgkin lymphoma. Mean time since diagnosis was 5.26 (T1) and 18.86 (T2) months post-diagnosis. Parents completed the Acceptance and Action Questionnaire II (to assess psychological flexibility), Dyadic Coping Inventory, a network support questionnaire, Impact on Family Scale and the Family Adjustment Scale. Both concurrent and prospective association models were tested. Results: Psychological flexibility, dyadic coping and network support proved to be cross-sectionally and positively related to parents’ perception of family adjustment post-diagnosis; psychological flexibility and dyadic coping proved to predict better family adjustment over time. Conclusions: Our findings led to the conclusion that protective factors at all three levels (individual, intrafamilial and contextual) are important for explaining family adjustment as perceived by parents facing a diagnosis of cancer in their child. Interventions targeting the individual, couple, as well as family level are warranted to enhance family adjustment. (shrink)

The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings.

Pediatric cancer is accompanied by many ethical challenges, particularly those related to respecting the child's opinion and parental responsibility and consent.Questionnaires were collected from 400 participants, from four equal groups: doctors, nurses, parents and medical students, from three cities in Saudi Arabia, about three problematic issues which revolve around the mandatory consent of one or both parents, the extent of a child’s assent, and the acceptable form of consent and assent.Despite the diversity of the participants' cultural backgrounds, most (...) preferred both parents to give consent, followed by either parent without differentiation between parents, which reinforced a trend towards more gender equality. The majority of participants preferred that parental consent forms be detailed enough to obtain the maximum information, while others chose medium‐size consent forms; a large majority preferred that the form seeking to obtain the assent of the child with cancer be short, reflecting their desire not to increase the burden on the child, in addition to the fact that the final decision belongs to the parents rather than the child. Most participants preferred to rely on a child's level of maturity rather than having reached a certain age so that they could give assent, while the rest considered the age of 13‐14 as a suitable age.These findings reflect an increasing ethical awareness regarding parental consent and child assent, and they can be formulated in a recommendation for a more ethical practice in the field of childhood cancer and pediatrics in general. (shrink)

It is estimated that 300,000 children 0–14 years of age are diagnosed with cancer worldwide each year. While the absolute risk of cancer in children is low, it is the leading cause of death due to disease in children in high‐income countries. In spite of this, the etiologies of pediatric cancer are largely unknown. Environmental exposures have long been thought to play an etiologic role. However, to date, there are few well‐established environmental risk factors for (...) class='Hi'>pediatric malignancies, likely due to technical barriers in collecting biological samples prospectively in pediatric populations for direct measurements. In this review, we propose the use of novel or underutilized biospecimens (dried blood spots and teeth) and molecular approaches for exposure assessment (epigenetics, metabolomics, and somatic mutational profiles). Future epidemiologic studies of pediatric cancer should incorporate novel exposure assessment methodologies, data on molecular features of tumors, and a more complete assessment of gene‐environment interactions. (shrink)

Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this (...) study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction. The procedure included linguistic translation and cultural adaptation of MDS-R’s paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care. To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens. Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients. (shrink)

The changes and general alarm of the current COVID-19 pandemic have amplified the sense of precariousness and vulnerability for family members who, in addition to the emotional trauma of the cancer diagnosis, add the distress and fear of the risks associated with infection. The primary objectives of the present study were to investigate the psychological impact of the COVID-19 pandemic on the parents of pediatric cancer patients, and the level of stress, anxiety, and the child’s quality of (...) life perceived by the parents during the COVID-19 epidemic. The parents of 45 consecutive children with solid and hematological tumors were enrolled. Four questionnaires were administered to the parents at the beginning of the pandemic lockdown. A 75% of parents exhibited remarkable levels of anxiety, with 60 subjects in state scale and 45 subjects in trait scale having scores that reached and exceeded the STAI-Y cut off. The bivariate matrix of correlation found a significant positive correlation between the IES-R and PSS scores. There was a positive correlation between the PSS and PedsQL scale and a negative correlation between IES-R and STAI-Y. The results confirm that parents of pediatric cancer patients have a high psychological risk for post-traumatic symptoms, high stress levels, and the presence of clinically significant levels of anxiety. (shrink)

The size and organization of the brain are determined by the activity of progenitor cells early in development. Key mechanisms regulating progenitor cell biology involve miRNAs. These small noncoding RNA molecules bind mRNAs with high specificity, controlling their abundance and expression. The role of miRNAs in brain development has been studied extensively, but their involvement at early stages remained unknown until recently. Here, recent findings showing the important role of miRNAs in the earliest phases of brain development are reviewed, and (...) it is discussed how loss of specific miRNAs leads to pathological conditions, particularly adult and pediatric brain tumors. Let‐7 miRNA downregulation and the initiation of embryonal tumors with multilayered rosettes (ETMR), a novel link recently discovered by the laboratory, are focused upon. Finally, it is discussed how miRNAs may be used for the diagnosis and therapeutic treatment of pediatric brain tumors, with the hope of improving the prognosis of these devastating diseases. (shrink)

In paediatric oncology, research and treatments are often closely combined, which may compromise voluntary informed consent of parents. We identified two key scenarios in which voluntary informed consent for paediatric oncology studies is potentially compromised due to the intertwinement of research and care. The first scenario is inclusion by the treating paediatric oncologist, the second scenario concerns treatments confined to the research context. In this article we examine whether voluntary informed consent of parents for research is compromised in these two (...) scenarios, and if so whether this is also morally problematic. For this, we employ the account of voluntary consent from Nelson and colleagues, who assert that voluntary consent requires substantial freedom from controlling influences. We argue that, in the absence of persuasion or manipulation, inclusion by the treating physician does not compromise voluntariness. However, it may function as a risk factor for controlling influence as it narrows the scope within which parents make decisions. Furthermore, physician appeal to reciprocity is not controlling as it constitutes persuasion. In addition, framing information is a form of informational manipulation and constitutes a controlling influence. In the second scenario, treatments confined to the research context qualify as controlling if the available options are restricted through manipulation of options. Although none of the influences is morally problematic in itself, a combination of influences may create morally problematic instances of involuntary informed consent. Therefore, safeguards should be implemented to establish an optimal environment for parents to provide voluntary informed consent in an integrated research-care context. (shrink)

Background: It is stated that the communication and disease experiences of paediatric patients, especially paediatric oncology patients, with healthcare professionals are completely different from those of adults. Objective: The aim of this study was to determine the definitions of a good physician and good nurse provided by elementary school-age oncology patients. Research design: In this qualitative research, data were collected through semi-structured individual interviews. The data were evaluated thorough thematic analysis. Participants and research context: Eighteen children hospitalised due to (...) class='Hi'>cancer in paediatric oncology and haematology clinics of a university hospital in Turkey. Ethical considerations: Permission to conduct the study was obtained from the Institution’s Ethics Committee. The objectives of this study were explained to the participants and families, and written consent was obtained from them. Also, participants were assured that necessary measures would be taken to protect their anonymity and confidentiality. Findings: The definitions of children were based on five main themes: interpersonal relationships, virtues, professional responsibility, security and individual characteristics. Conclusion: Children conveyed important messages to health professionals. They emphasised that a good physician and good nurse should communicate well, not only with themselves but also with their family. In addition, children were sensitive about health professionals who played with them and actively participated in the treatment by informing them about the disease. Meeting the expectations of children can be possible by improving the communication skills of physicians and nurses and by adding games and activities to the treatment and care plan. (shrink)

In paediatric oncology, research and treatments are often closely combined, which may compromise voluntary informed consent of parents. We identified two key scenarios in which voluntary informed consent for paediatric oncology studies is potentially compromised due to the intertwinement of research and care. The first scenario is inclusion by the treating paediatric oncologist, the second scenario concerns treatments confined to the research context. In this article we examine whether voluntary informed consent of parents for research is compromised in these two (...) scenarios, and if so whether this is also morally problematic. For this, we employ the account of voluntary consent from Nelson and colleagues, who assert that voluntary consent requires substantial freedom from controlling influences. We argue that, in the absence of persuasion or manipulation, inclusion by the treating physician does not compromise voluntariness. However, it may function as a risk factor for controlling influence as it narrows the scope within which parents make decisions. Furthermore, physician appeal to reciprocity is not controlling as it constitutes persuasion. In addition, framing information is a form of informational manipulation and constitutes a controlling influence. In the second scenario, treatments confined to the research context qualify as controlling if the available options are restricted through manipulation of options. Although none of the influences is morally problematic in itself, a combination of influences may create morally problematic instances of involuntary informed consent. Therefore, safeguards should be implemented to establish an optimal environment for parents to provide voluntary informed consent in an integrated research-care context. (shrink)

Clinical ethics has been developing in paediatric healthcare for several decades. However, information about how paediatricians use clinical ethics case consultation services is extremely limited. In this project, we analysed a large set of case records from the clinical ethics service of one paediatric hospital in Australia. We applied a paediatric-specific typology to the case referrals, based on the triadic doctor–patient–parent relationship. We reviewed the 184 cases referred to the service in the period 2005–2014, noting features including the type of (...) case, the referring department(s) and the patient9s age at referral. The two most common types of referral involved clinician uncertainty about the appropriate care pathway for the child (26% of total referrals) and situations where the child9s parents disagreed with the doctors’ recommendations for the child9s care (22% of total referrals). Referrals came from 28 different departments. Cancer, cardiology/cardiac surgery and general medicine referred the highest numbers of cases. The most common patient age groups were children under 1, and 14–15 years old. For three controversial areas of paediatric healthcare, clinicians had initiated processes of routine review of cases by the clinical ethics service. These insights into the way in which one very active paediatric clinical ethics service is used further our understanding of the work of paediatric clinical ethics, particularly the kinds of ethically challenging cases that paediatricians view as appropriate to refer for clinical ethics support. (shrink)

Background Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. Methods An (...) explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. Results The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. Conclusion This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research. (shrink)

Objectives: Childhood cancer is a life-threatening disease that poses significant challenges to the life of the diagnosed child and his/her family members. Based on the ABCX-model, the aim of the current study was to explore the association between family functioning, cancer appraisal and the individual adjustment of patients, parents and siblings. Method: Participants were 60 children with leukemia or non-Hodgkin lymphoma, 172 parents and 78 siblings (115 families). Time since diagnosis varied from zero to 33 months. Patients, parents (...) and siblings completed the Family Environment Scale, Perceived Stress Scale, Situation-Specific Emotional Reactions Questionnaire and Pediatric Quality of Life Inventory/Maudsley Marital Questionnaire. Results: Family functioning and the appraisal of the cancer diagnosis proved to be related to patients’, parents’ and siblings’ cancer-related emotions and quality of life post-diagnosis. In addition, family members differed in their perception of some family functioning domains, the appraisal of the cancer diagnosis, positive feelings and quality of life. Discussion: Our findings led to the conclusion that family functioning and the appraisal of the cancer diagnosis are important for the individual adjustment of patients, parents and siblings when facing a diagnosis of cancer in the child. Differences across members within one family speak to the need of screening all family members and intervening at the level of the family unit. (shrink)

Objectives: To quantify the use of do-not-resuscitate orders in a tertiary-care children’s hospital and to characterise the circumstances in which such orders are written.Design: Retrospective study conducted in a 500-bed children’s hospital in Taiwan.Patients: The course of 101 patients who died between January 2002 and December 2005 was reviewed. The following data were collected: age at death, gender, disease and its status, place of death and survival. There were 59 males and 42 females with a median age of 103 months (...) . 50 children had leukaemias, and 51 had malignancies other than leukaemia. The t test and the χ2 test were applied as appropriate.Results: The study found that 44% of patient deaths occurred in the paediatric oncology ward; 29% of patient deaths occurred in the intensive care unit; and 28% of patients died in their home or at another hospital. Other findings included the following: 46 of 101 patients died after attempted cardiopulmonary resuscitation and 55 died with a DNR order in effect. The mean age at death was 9.8 years in both groups with or without DNR orders.Conclusions: From the study of patient deaths in this tertiary-care children’s hospital, it was concluded that an explicit DNR order is now the rule rather than the exception, with more DNR orders being written for patients who have been ill longer, who have solid tumours, who are not in remission and who are in the ward. (shrink)

Pediatric cancer can be considered an event potentially leading to posttraumatic stress symptoms as well as posttraumatic growth. While clinically significant levels of PTSS are rare in childhood cancer survivors, PTG is common in this population. However, the relationship of PTG to overall adaptation and quality of life in pediatric cancer patients is not clear. Therefore, our study aims to analyse the relationships of PTSS and PTG with QOL in childhood cancer survivors. In this (...) study, 172 childhood cancer survivors completed measures of quality of life, posttraumatic stress and posttraumatic growth. Correlation analyses were carried out separately for the child and adolescent groups and each QOL dimension. In the adolescent group, the relationship of PTSS and PTG with QOL was further verified by regression analyses while controlling for age, gender, and time off treatment. In children, negative relationships between PTSS and QOL were found, but the relationships between QOL and PTG were not significant. In adolescents, significant relationships were found for all dimensions of QOL and PTSS and also for several dimensions of QOL and PTG. The relationships between PTSS and QOL dimensions were negative in both groups, and the relationships between PTG and QOL in the adolescent group were weakly positive. In adolescents, regression analyses controlling for age, gender and time off treatment were performed and confirmed a negative relationship of PTSS with all QOL dimensions except for social functioning. For PTG, regression analyses revealed a significant positive relationship with QOL dimensions of social functioning, outlook on life and intimate relations. While the relationship between PTSS and QOL is negative for almost all QOL dimensions in children and adolescents, the nature of the relationship between PTG and QOL appears to be more complex and changing over time. PTG in children may reflect different processes with different outcomes than PTG in adolescents. (shrink)

This article will explore pediatric consent through the analysis of a clinical case study using the principles of biomedical ethics approach. Application of the principles of autonomy, nonmaleficence, beneficence, and justice will be dissected in order to attempt to establish resolution of the ethical dilemma. The main conflict in this case study deals with whether the wishes of an adolescent for end-of-life care should be followed or should the desire of his parents outweigh this request. In terminal cancer, (...) the hope of early palliative care and dignity in dying serve as priorities in therapy. Application of the moral principles to both sides of the dilemma aided in providing an objective resolution to uphold pediatric consent. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' (...) experiences of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

PURPOSE: The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results. METHODS: Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents (...) in a tertiary care oncology setting. RESULTS: The content validity index for individual questions and the overall questionnaires scored as 0.86 for both questionnaires. All 30 parents and 10 adolescents who agreed to participate returned questionnaires. The majority (>95%) indicated that they had a strong or very strong right to receive results. Letter or e-mail was a satisfactory means to return results described as good or neutral (66% parents, 100% adolescents) but more participants wished face-to-face disclosure of results with negative implications (50% parents, 60% adolescents). Very few wanted results disseminated through a Web site. The majority acknowledged the need for peer-review before disclosure (60% of adolescents and parents) but did not want "to be the last to know." CONCLUSIONS: Our data suggest that pediatric oncology patients and parents of children with cancer strongly feel that they have a right to research results, and that they wish to receive these in a timely manner. (shrink)

Background Providing care to children with cancer is one of the most challenging areas of ethical care for nurses. Few studies have addressed nurses’ perception of the barriers to giving ethical care in oncology departments. Thus, it is essential that the ethical challenges in caregiving as perceived by oncology nurses be investigated. Objective The present study was conducted to investigate the ethical challenges as perceived by nurses in pediatric oncology units in the south of Iran. Research design The (...) present study is a qualitative work of research with a conventional content analysis design. Data were collected via individual semi-structured interviews. The collected data were analyzed using the qualitative content analysis method. Participants and research context The participants were 21 nurses from pediatric oncology units in state hospitals who were selected by purposeful sampling. Sampling continued until the data were saturated. The study lasted from April to October 2022. Findings Three main themes, promoting psychological safety in the children, respect for the dignity of the children, and expansion of support for families, and nine subthemes were extracted from the data. Ethical considerations The study’s protocol was approved by the Research Ethics Committee of the University of Medical Sciences and ethical principles were followed throughout the study. Discussion and conclusion From the nurses’ perspective, the major ethical challenges in providing ethical care in pediatric oncology units were reducing tension toward promoting the patients’ psychological safety, showing respect for the identity and dignity of the children with cancer, and expanding support of the patients’ families. By creating the right cultural and professional context and establishing proper protocols, healthcare policymakers and administrators can take effective steps toward eliminating the barriers to providing ethical care. (shrink)

Background Chemotherapy and/or radiotherapy treatments may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of therapies on future reproductive autonomy are a major concern. While a few options are open to post-pubertal patients, the only immediate option currently open to pre-pubertal girls is cryopreservation of ovarian tissue and subsequent transplantation. The aim of the study was to address a current gap in knowledge regarding the offer (...) of fertility preservation by Ovarian Tissue Cryopreservation for prepubescent girls with cancer, and to explore current practices and attitudes of Canadian, French and Moroccan pediatric heme oncologists. The comparative perspective is relevant since legal frameworks surrounding fertility preservation and funding offered by the healthcare system vary greatly. Methods An online survey was sent to the 45 pediatric oncology centers in Canada, France and Morocco. Results A total of 39 centers responded. OTC is offered by almost all pediatric heme oncologists in France, very few in Canada, and none in Morocco. For pediatric hematologists/oncologists who do not propose fertility preservation in Canada, the reasons are: the technique is still experimental, it is not available locally and cost of the technique for the family. 97% of Canadian and 100% of Moroccan pediatric hematologists/oncologists think OTC should be funded by the healthcare system as it is in France and in the province of Quebec in Canada. Conclusions The results of this study show tremendous diversity in the provision of OTC across countries, whereby its offer is correlated with legislation and funding. We argue that the current reality, in which this technology is often not offered to families, raises ethical issues related to justice and equity of access, as well as informed consent and future reproductive autonomy. (shrink)

With the cure rate for many pediatric malignancies now between 70% and 90%, infertility becomes an increasingly important issue. Strategies for preserving fertility in girls and adolescent women occur in two distinct phases. The first phase includes oophorectomy and cryopreservation of ovarian cortex slices or individual oocytes; ultrasound-guided needle aspiration of oocytes, with or without in vitro maturation, followed by cryopreservation; and ovarian autografting to a distant site. The second phase occurs if the woman chooses to pursue pregnancy, and (...) includes IVM of the oocytes, followed by in vitro fertilization and transfer of any created embryos to the woman's uterus. For ovarian autografting, the woman would undergo menotropin ovarian stimulation and retrieval of matured oocytes. The ethical challenges with each of these phases are many of fertility preservation and include issues of informed choice. The lack of proven benefit with these strategies and the associated potential physical and psychological harms require careful attention to the key elements of informed choice, which include decisional capacity, disclosure, understanding and voluntariness, and to the benefits of in-depth counseling to promote free and informed choice at a time that is emotionally difficult for the decision makers. (shrink)

Scholars have debated the role that altruistic considerations play—and should play—in recruitment and decision-making processes for clinical trials. Little empirical data are available to support their various perspectives. We analyzed 140 audiotaped pediatric informed consent sessions, of which 95 (68%) included at least one discussion of how participation in a cancer clinical trial might benefit: 1) the pursuit of scientific knowledge generally; 2) other children with cancer specifically; and 3) “the future” and other vaguely defined recipients. Clinicians (...) initiated most (80%) of these discussions of altruism. The enrollment rate of children in the clinical trial was high (83%) overall, but not higher among children whose parents were involved in an altruism-oriented discussion. These findings suggest that: (1) clinicians invoke a spectrum of altruistic considerations rather than a single monothematic notion of altruism, and (2) the effect of altruistic considerations on subsequent enrollment decisions is marginal. While further research on this topic is warranted, bioethical debate should strive to reflect the diversity of altruistic discourse in clinical research encounters and to place this discourse in the context of other, including nonaltruistic, considerations. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Bittersweet Score:A Father’s Account of His Family’s 20-Year Journey After a Pediatric Brain Tumor DiagnosisChristopher RileyI hadn’t seen him for 20 years, not since the day he drilled a hole in Peter’s head and left the stainless steel drill and bloody bit on the bedside table. He figured prominently in the story I often told of that day when he, a doctor in training, [End Page 3] (...) informed my wife Kathy and me that, “Wow,” our five-year-old son had “an impressive tumor” in his brain. He announced it with the admiration I reserve for a touchdown pass or stunning sunset. Since that day, he had become a venerable physician. Back then he was the resident who met us in the ER after our pediatrician told us that the MRI of Peter’s brain was “not normal,” that “there might be a growth.” As if there might not be. I imagined that Peter’s brain might simply have an unusual shape, or that the scan revealed some undiscovered fracture and the authorities only wanted to lock me up and all with my son would be well. The thrilled young doctor slew those hopes with an ice pick: “Wow, that’s an impressive tumor.” I said, “That’s the first time anyone has used the word tumor.” The doctor appeared mortified and started over.Now 20 years later we found ourselves at the same party and I felt a compulsion to introduce myself, remind him we’d met that day in 1993, and tell him what had become of Peter and his family in the decades since he’d made that mortifying mistake, one I hoped had become for him a defining moment. To my disappointment, he didn’t seem to remember.Peter was my red-haired boy. Fearless and whip smart, he told a stream of knock-knock jokes and performed dance routines choreographed by his 8-year-old sister Rachel. Six months of headaches, vomiting and clumsy falls led to discovery of the tumor. When I phoned my parents with the news, I couldn’t speak the words, words that felt as if they spelled my boy’s doom. My body refused to pronounce them.The war for Peter’s life began with surgery. I sat with Kathy in the surgical waiting area, fearing every minute that I would see the surgeon approaching with his shoulders slumped in mortal defeat. I learned during those hours that fear of your child’s death is a physical pain, a constriction in the chest, a suffocation. At the end of that wait, the surgeon told us the tumor was out and Peter had survived. The pathology indicated the tumor was a medulloblastoma. Without additional treatment, including radiation, it was certain to come back. Kathy’s knees buckled. Having just endured one life-and-death battle, we were plunged into another. To complicate matters, Peter wasn’t waking from surgery. Even after the anesthesia wore off, Peter remained groggy, unable to move or focus his eyes.Through the following days, Peter failed to rouse or speak. Sores formed at the back of his neck where his unswallowed saliva pooled. Neurologists doubted he knew us. His doctors hoped Peter would recover but it was possible he would remain as he was indefinitely. As I sat holding his useless hand, watching his useless body, I thought I’d never loved him as much as I did now.Peter’s doctors presented two treatment options. The first consisted of relatively high doses of daily radiation, the most effective known method for preventing the return of the cancer. But radiation wasn’t good for young brains. It “shaved IQ points,” they said in wild understatement. So they offered a second, experimental option, one that reduced radiation by a third and added months of chemotherapy. The doctors hoped this new regimen would be as effective as the old but cause less cognitive damage. They asked us to choose. It seemed impossible. We gathered the scant available data. We weighed the risks. We prayed. We took a leap. Without asking him, we made a decision for Peter we knew... (shrink)

In the USA, one child in 285 children is diagnosed with cancer every year, but thanks to improvements in medicine, the survival rate has reached 80%. However, cancer treatments, such as chemotherapy and radiation, are likely to affect their fertility later in life, limiting their ability to conceive. To reduce this risk, ovarian tissue cryopreservation is a surgical procedure that allows the ovarian tissue to be retrieved and cryopreserved in order to be reimplanted back into the abdomen and (...) restore ovarian function in children who become infertile due to gonadotoxic treatments. A case study published in 2014 offered recommendations to help assess whether such a procedure should be offered to female patients who have not yet entered puberty. This paper will investigate whether, in light of more recent and updated literature, their recommendations may need to be revised. (shrink)

The clinical relevance of whole-exome sequencing is unquestionable. In the prenatal setting, the standard testing process of reflexing from karyotype to microarray to single-gene disorders may take several weeks, leaving a family in prolonged turmoil and often without answers in time to make a decision about the pregnancy. WES provides a powerful amount of data more quickly and with a higher yield of diagnostic results, allowing a timelier plan for medical management and decision-making. However, while results that pertain specifically to (...) the testing indication can be isolated, the potential for incidental findings or results that are unrelated to the original testing indication is significant. In 2013, ACMG published recommendations for reporting incidental or secondary findings, providing a list of 57 clinically actionable genes for which reporting should be obligatory. These recommendations were updated in 2015 to include the option to opt out of receiving all secondary findings. The list includes childhood-onset conditions, for which medical management would be immediately impacted. However, the list also includes adult-onset conditions such as hereditary breast and ovarian cancer and Lynch syndrome. Historically, decisions regarding genetic testing for these conditions have been left up to the individual until they reach the age of consent. While the 2015 recommendations are an improvement over the 2013 recommendations insofar as they allow an option to opt out of receiving secondary findings, the recommendations continue to have potentially troubling ethical consequences. (shrink)

BACKGROUND: Researchers have a moral responsibility to offer to return research results to participants, but the needs and attitudes of parents and adolescents with cancer in paediatric oncology regarding the issue are relatively unknown.OBJECTIVES: To explore the needs of potential research participants or their guardians with respect to the offer of a return of research results. METHODS: A questionnaire was used in a focus group and in telephone interviews with eight adolescents and 12 parents of children with cancer. (...) The participants were asked to respond to the questions and to comment on the inclusiveness of the questionnaire.RESULTS: The majority of participants (18 of 20) wished to receive research results. Two somewhat unexpected findings are described. First, all participants in the present study felt that it was the primary responsibility of the participant to retain contact with the researchers for the purpose of obtaining research results. Second, few participants (n=2) indicated that the Internet would be a satisfactory way of transmitting these results. One-half of the participants wished to have face-to-face communication of results.CONCLUSIONS: These results provide preliminary guidance for the return of research results to participants and validate the use of the questionnaire in a larger study of this issue. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Advocates, Not Problem ParentsAnonymous TwoNothing could have prepared us for the shock of hearing that our son had a brain tumor.Rob* was 13½, an active, healthy eighth grader, when he developed a headache so bad he couldn’t get out of bed in the morning. We saw the pediatrician three times over the next ten days. On the third visit, after ruling out problems at home, stress at school, strep (...) throat and mono, he sent us for an MRI. When the radiology tech handed me the films and told us to drive back to the pediatrician’s office, I knew we were in trouble. Sure enough, after all the other patients had left, our long–time doctor called us into his tiny office, shut the door and fumbled with the films as he pointed to a white spot that he said was a brain tumor.So began the experience that would change the course of our lives. We remember the diagnosis in detail and relive it in slow motion. We recall packing suitcases, driving to the hospital, waiting to be seen in the emergency room, and walking through doors marked “Pediatric Hematology/Oncology” for the first time.We date everything “BC” (Before Cancer) or “AD” (After Diagnosis). We are grateful every day that [End Page 13] our son is alive, but we know he is forever changed. We are changed: Our nuclear family, our extended family, everyone who knew us and supported us at the time was affected. A pediatric cancer diagnosis is a bomb that shatters your world without warning. If you’re lucky, you can pick up a lot of the pieces, maybe even most of them, but the world you re–enter is never the one you inhabited before.Our doctor delivered the diagnosis to Rob and me at the same time. I’ve thought about this many times and perhaps one day will ask him: Why did he choose to do it that way? Was it a conscious decision or just happenstance? Was it kinder, in the long run—like pulling off a band–aid quickly—or terribly risky? What if I had collapsed at the news? I asked to step into the hall to use the phone. In a state of numbness, I called my husband. He knew we had had an MRI a few hours earlier. “Come quickly,” I said. “There’s a mass.”We chose to go to a top-ranked major medical center and were admitted that evening. A couple of days later, the discovery of tumor markers in Rob’s cerebrospinal fluid and blood confirmed a central nervous system mixed germ cell tumor. We were told he would require six cycles of chemotherapy, followed by six weeks of radiation, and possibly second–look surgery and high-dose chemo with stem cell rescue on top of that. We were given a consent form listing a catalogue of short–and long–term side effects, among them the likelihood of infertility. We were urged to start treatment as soon as possible.By sheer coincidence I had just completed a project for a small, nonprofit organization that existed to inform young adult cancer patients about their fertility rights and options. I knew that infertility concerns were usually pushed aside at diagnosis to make way for other priorities, namely the urgency of starting treatment. And that’s exactly the kind of pressure we were facing.But my husband and I were not ready to sign away our son’s fertility in what felt like a no–confidence vote, a capitulation. We needed to believe that he would survive and put this horror behind him, that he would look forward to marriage and starting a family. We were willing to cede nothing to the disease at this early stage of the game. Was this rational, naive or selfish on our part? I don’t know.The medical team seemed surprised when we asked for a delay in treatment in order to collect sperm samples. They warned that our son’s condition could decline suddenly—and that postponing treatment by even several days might be dangerous. However, at our insistence, they agreed to the delay... (shrink)

INTRODUCTIONIs the non-therapeutic circumcision of infant males morally permissible? The most recent major development in this long-simmering debate was the 2012 release of a policy statement and technical report on circumcision by the American Academy of Pediatrics . In these documents, the US paediatricians’ organisation claimed that the potential health benefits of infant circumcision now outweigh the risks and costs. They went on to suggest that their analysis could be taken to justify the decision of parents to choose circumcision for (...) their incompetent children.1Circumcision and ‘health benefits’The AAP's pronouncement unleashed a firestorm of commentary, much of it censorious. In this issue, human rights attorney J Steven Svoboda and Professor of Clinical Paediatrics Robert Van Howe take the AAP to taski for committing numerous significant errors, both in their analysis of relevant evidence and in basic medical-ethical reasoning.3 In addition, an independent international panel—composed of 38 leading paediatricians, paediatric surgeons, urologists, medical ethicists and heads of hospital boards and children's health societies—has likewise condemned the findings of the AAP. Writing in the journal Pediatrics, these authors state: "Only one of the arguments put forward by the American Academy of Pediatrics has some theoretical relevance in relation to infant male circumcision; namely, the possible protection against urinary tract infections in infant boys, which can easily be treated with antibiotics without tissue loss. The other claimed health benefits, including protection against HIV/AIDS, genital herpes, genital warts, and penile cancer, are questionable, weak, and likely to have little public health relevance in a Western context, and they do not represent compelling reasons for surgery before boys are old enough to decide for themselves.4"My own analysis of the AAP documents—and of ‘health benefits’ defences of circumcision generally—can be found elsewhere.5 Let me turn my attention in this editorial, then, to …. (shrink)

This article provides a discussion of the limits of both narrative and culture based on a close textual analysis of the short story, “People Like That Are the Only People Here: Canonical Babbling in Peed Onk,” by Lorrie Moore. In this story, a mother describes her experiences on a pediatric oncology ward when her infant son develops Wilms' tumor. The authors examine how the story satirically portrays the spurious claims of language, story, and culture to protect us from an (...) unjust universe and then exposes their false promises. The various personal, professional, and genre-specific narratives we use to create order and coherence from the terror of serious illness are ultimately ineffective. Similarly, the superficially comforting culture of the hospital ward cares more about creating the illusion of control than it does about the suffering of sick children. Language and culture cannot make sense of human anguish, the article concludes, yet they are all we have to hold back the chaos. Mystery and uncertainty, as part of the human condition, must become part of our stories and part of our culture. (shrink)

Viola and Ben, two pediatric oncology patients, need to undergo chemotherapy that might decrease their fertility. Both of them want to participate in the decisions related to their cancer treatment and fertility preservation. Should they be involved, and if so when and how?In many jurisdictions, children are not entitled to provide legally valid consent for medical decisions.1 As a result, others, usually parents, take on the role of surrogate decision-makers who act in their best interest. Still, it is (...) important to keep in mind that the age limit for competence set by legislation does not necessarily coincide with children’s clinical decision-making capacity: some children may be able to make certain health-care... (shrink)

BACKGROUND: The offer of return of research results to study participants has many potential benefits. The current study examined the offer of return of research results by analyzing consent forms from 2 acute lymphoblastic leukemia studies of the 235 institutional members of the Children's Oncology Group. METHODS: Institutional review board (IRB)-approved consent forms from 2 standard-risk acute lymphoblastic leukemia studies (Children's Cancer Group [CCG] 1991 and Pediatric Oncology Group [POG] 9407) were analyzed independently by 2 reviewers. RESULTS: The (...) authors received replies from 202 of the 235 institutions that were contacted (85%). One hundred eighty-one institutions had CCG 1991 (n = 96) or POG 9905 (n = 85) protocols that were approved by an IRB. Most institutions provided contact information for the principal investigator (n = 175; 97%) and a member of the institution's research services office (n = 154; 85%). Only 5 (2.8%) institutions provided an indication of a participant's right to receive a summary of research results; most of these institutions provided details on how (n = 5) or when (n = 5) this was to occur. All of these institutions (n = 162; 89.5%) provided a specific statement offering new information that might affect a participant's decision to continue to participate in a study. Only 2 institutional consent forms offered participants the option to receive research results, and only 10 (5.5%) consent forms contained an unambiguous, specific statement offering to provide new information after the study was closed. CONCLUSIONS: Few institutional review board-approved consent forms explicitly indicate the right of research recipients to receive a summary of the results of the research in which they have participated. (shrink)

When should doctors seek protective custody to override a parent’s refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25–50%. This is not the case when the treatment in question is open heart (...) surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40–50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations. (shrink)

Background: Understanding is an important goal of the informed consent process in research. We sought to assess the interrater reliability (IRR) and concurrent validity of two measures of understanding in child and young adult subjects and their parents. Methods: We conducted a cross-sectional survey and interview-based study of children and young adults participating in a clinical trial for cancer, along with one parent per child or young adult subject. We estimated the IRR of the Semi-Structured Comprehension Interview (SSCI) and (...) the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). We also estimated concordance between the SSCI, the MacCAT-CR, and the Quality of Informed Consent (QuIC). Results: For our sample of 32 subjects (16 parent–child pairs), IRR estimates were high for total score on the SSCI (intraclass correlation coefficient [ICC] = 0.88, 95% confidence interval [CI] = 0.76–0.94), as well as on the understanding (ICC = 0.93, 95% CI = 0.86–0.97) and reasoning (ICC = 0.97, 95% CI = 0.94–0.98) subscales of the MacCAT-CR. IRR was lower for the appreciation subscale of the MacCAT-CR (ICC = 0.70, 95% CI = 0.47–0.84). Scores on the SSCI were strongly correlated with scores on the understanding subscale of the MacCAT-CR (Spearman's rho = 0.72, 95% CI = 0.48–0.85) and the QuIC (Spearman's rho = 0.66, 95% CI = 0.24–0.87). Mean administration time for the SSCI was 3.1 minutes (95% CI = 2.7–3.5 minutes). Conclusions: The SSCI is a valid and reliable measure of understanding for use with both pediatric and adult research participants. It is easy to administer and score consistently, even by nonprofessional raters. The SSCI is a promising tool for use by clinician-investigators to study, detect, and correct deficiencies in understanding among children, adolescents, and adults making decisions about research participation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Semi-Personal Story from a Ukrainian NGO Professional (or a Semi-Professional Story from a Ukrainian Person) Living through the WarYuliya NogovitsynaI live in Kyiv with my husband and two daughters. On 24 February 2022, my husband woke me up at 5 am tapping me on the shoulder and saying, “Yulia, wake up. There are bombings outside. The war started”. [End Page 160]That day was our younger daughter’s birthday. She (...) turned six. We had planned a birthday party for her with friends, cake, candles and birthday gifts. Instead, we had to move both daughters to the bathroom where there are no windows so that broken glass did not hurt them if a missile hit.I am the Program Director at Tabletochki Charity Foundation, Ukraine’s largest childhood cancer NGO (https://tabletochki.org/en/). For 11 years before the war, we have been fostering childhood cancer care in Ukraine—through our direct assistance to families, support of pediatric oncology units, professional development of medical personnel, and advocacy.The Russian invasion of Ukraine in February 2022 dramatically changed the healthcare system landscape in Ukraine. The physical threat, treatment disruption, exposure of immunosuppressed patients to improper conditions in bomb shelters and cellars, interruption in supplies, infrastructure damage, logistics failure, and funding constraints have been among the most manifested immediate and deferred implications of the war for the health-care system in Ukraine.That said, the biggest professional challenge was uncertainty and inability to plan. You have nothing to rely on in developing at least a short-term strategy. This may sound speculative and unimportant—who bothers about uncertainty when there is a physical threat to your life? But this is a wrong perception—uncertainty paralyzes and disables long before a bullet or missile reaches you.War also brings the collapse of relationships, partnerships, and coalitions. It depletes and limits resources, whether human, financial, or emotional. Scarce resources make hospitals, healthcare professionals, and NGOs compete for patients, donors, and financing. The war and the external threat unite only for a short period of emergency response. Once the situation transitions to a protracted conflict, people and institutions start fighting for their own survival.My family stayed in Ukraine but moved to Lviv, a city in Western Ukraine, which turned into an evacuation hub for children with cancer. More than 1,000 children with cancer were evacuated and referred for treatment abroad through the SAFER Ukraine collaborative initiative by St. Jude Global, Tabletochki, West-Ukrainian Specialized Children’s Medical Center (WUSCMC), and other international and local partners.During the first months of the war, we worked hand-in-hand day and night to bring critically ill children to safety and treatment. We sent evacuation convoys from Lviv to Poland twice a week, the largest one with 71 families, included four buses and 11 ambulances. We slept 4-5 hours per day. Within two weeks, my hands and legs were trembling from constant tension, concentration, and tiredness.And even this extremely fast-responding and effective evacuation may be questioned. We have been facing an ethical dilemma—whether the safety needs of the existing patients prevail over the needs of future patients in diagnostics and treatment in Ukraine. We discussed more than once whether we should stop evacuation and referral of children to European hospitals to sustain the Ukrainian childhood cancer care system and prevent it from degradation. It is very uncomfortable to confront such questions. Could our heroic efforts to evacuate as many Ukrainian children with cancer as possible turn into an evil for future patients to come? By evacuating patients, we left pediatric oncology units empty, without work for Ukrainian pediatric oncologists, and the usual pathways for diagnostics and treatment were disrupted. A healthcare system without patients is like a cardiovascular system without blood.My family returned to Kyiv in August 2022 for our daughters to continue their schooling. There were (and still are) only five to seven kids in a class; other children left Ukraine or switched to online studies. My husband and I decided that our children will attend school offline—despite the regular missile attacks. This is a private school; we pay for it. In such a way... (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors (...) then negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Prepping for the Day You Hope Never Arrives:Facing RecurrenceTerra TrevorMy 14–year–old son was eight years past diagnosis of a brain tumor. Gone were the pristine sick days when his white hooded sweatshirt stayed spotlessly clean for weeks at a time. Each time he left a muddy footprint on the kitchen floor I rejoiced; it felt so good to have a healthy kid again. However, my son was a survivor (...) of an anaplastic ependymoma, grade IV, brain tumor, and although I wanted to be out of the woods, I knew we were not. I’d climbed out of the space where medical problems were fi led in my mind, yet I kept the door open because statics showed that the type of brain tumor he had, frequently recurred.Still, I was determined to keep our lives as ordinary as possible. But for a brain tumor family this meant staying connected to sources of support. Parent programs, patient and sibling support groups [End Page 27] and camps, and we remained connected to hospital resources. Most of all we needed to have fun as a family, and we attended the cancer survivor picnics and parties our hospital hosted, where the doctors served as volunteers, grilling hamburgers and dishing up ice cream for the guest of honor patients.My husband and I felt confident that as long as we worked as a team with our doctors and stayed connected to resources offered, we would find a way to meet any challenges that might surface.In the end ultimately what saved us was this mosaic of support provided to us over the years from a multitude of good people and organizations offering help when we needed it most. And I had the opportunity to learn to accept help, which it turns out, is far harder than offering to help.Shortly after my son Jay celebrated his 8th year as a brain tumor survivor, I watched him open the medicine cabinet and reach for the bottle of Advil, for the second time in a row that day. “Do you have a headache again?” I asked. He shrugged his shoulders, then hiccupped hard, and ducked his head in the toilet and threw up. Tears welled in his eyes. I sank into the deep, silent panic that made me calm.Our primary care physician called in an authorization for an MRI. Jay hid his fear behind a mask of quiet strength. It was ten days before his fifteenth birthday.While we waited for the MRI appointment, that week Jay was elected student of the month, and he got a lead part in the school play. My idyll of family hood continued until the MRI confirmed my worst fear—the tumor was back, and this time its fingers spread into the brainstem.We had to decide on a plan of treatment. Surgery was scheduled. When Jay was admitted to the hospital and I requested that he be placed in the pediatric ward, an environment he was familiar with, they agreed. Although Jay was a teenager, the recurrence caused him to revert emotionally back to a younger age. It was as if he was seven–years–old again, reliving his first brain tumor experience, and he kept his childhood security item—a small teddy bear with him, tucked under the hospital covers, like he had with the first diagnosis.Luck held. With surgery most of the tumor was resected and symptoms disappeared. Three days later, on Thanksgiving, he was feeling well enough to be excited about the Thanksgiving dinner our hospital provided us. A table and chairs were brought in, along with a feast of good food. The nurses gave Jay lavish attention, they laughed at the corny jokes he told, and made us feel like special company.Within a week Jay was out of the hospital, recovering well. But what to do about the remaining brain tumor slivers that were inoperable? He had already received his lifetime dose of whole brain radiation, and chemotherapy available offered little hope of curing a recurrent tumor. But there was a small chance that stereotactic radiation might stall tumor growth. We set up a consultation.We had... (shrink)

Shortages of generic, injectable chemotherapeutics have been increasing in prevalence since 2006. Due to the lack of access to first-line, lifesaving treatments, physicians have been forced to ration chemotherapy between patients. Although the scarcity has been managed with good intentions, it has been done in an ad hoc manner, without the benefit of an ethically grounded and standardized schema. Using an approach based on the “accountability for reasonableness” method by Daniel and Sabin, I establish a framework and protocol for rationing (...) that is specific to chemotherapy. Prior to the state of true shortage, I present guidelines for the use of an adequate supply of chemotherapy with knowledge of upcoming scarcity. Within the rationing framework itself, I first prioritize emergency use of chemotherapeutics and those already receiving treatment at the time of shortage. I advocate for stratifying patients based on the prognostic indicators of their cancer type, using a combination of clinical-trial-based initial response and longer term survival, followed by the patients’ line of treatment. All patients who are not able to receive their “best” treatment must receive a sequent, next-best treatment, and their treatment team must have the ability to appeal to a rationing committee in special circumstances. I reject the ideas of stratification based on the intention of the treatment, perceived quality of life, pre-existing condition not impacting performance status, the classical “sickest first” argument, and giving preference to pediatric cases. Lastly, I advocate for any system of rationing to be transparent to those it affects and acknowledge the difficulties it presents to patients and physicians alike. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:My Lost SurvivorVirginia HammondI can’t remember the exact words as I brought my 7–year–8–month–old daughter Ann to the university medical center late spring for a review of her brain surgery from March 1990, but the words were something like it was a remarkable 98% resection, then the team went on to say 75% was considered successful and they were surprised since the surgery was not done at a major (...) medical facility. I explained to the team we had three neurosurgeons in our town from major facilities out of state who were very well regarded so I opted to stay in town for her surgery, but valued the university medical center’s recommendation for radiation treatment. The next decision I had to make was where. I not only had to consider my daughter, but my toddler that I had to drag everywhere through all this as I had no family nearby to help me. I opted for a 75–mile drive.The radiation protocol was for eight weeks of hyperfractionated radiation. I would leave the house with the both kids by 7:30 a.m. and stay until 3:30 p.m. because there were two treatments a day around six hours apart. I had thoughts that I would be able to take the kids to the zoo or children’s museum in between treatments, but Ann was much too sick for that. We spent most of our day at the playroom in the cancer patient house next to the radiation facility. We eventually got a room at the cancer home.Even before the radiation therapy, Ann became sick and would wake up every morning vomiting very much like she would before the tumor resection. This vomiting went on for almost two years after her surgery and radiation. We were bounced around between doctors and specialist then finally a pediatric neurologist was concerned about how thin and frail she was and prescribed a medication that goes by the generic name Cyproheptadine hoping it would help her appetite. Within a couple of days, much to my surprise, the medicine stopped the morning vomiting and she began to eat and regain some strength as she approached the age of ten.Now that Ann was no longer showing the outward physical signs of being ill, her school didn’t think it was necessary to make accommodations for Special Education, or follow the recommendations made by a neuropsychologist’s report. I was told her educational performance was average for her age and grade level. The school did discover she could not hear in her left ear and sent home a note that demanded I seek medical attention. I explained to [End Page E4] them her doctors were well aware of her perforation in her ear and decided they wanted more time to pass from the brain surgery before performing ear surgery.There was one bright spot during her elementary school years. She had a teacher who went out of his way to make sure Ann was responding to what was being taught. Aware of her hearing deficit in her left ear and some of her cognitive deficits, he sat her in the classroom where she could hear at her best and placed her next to classmates who would not distract her. When she would forget to bring her homework home, he would stop by the house with it rather than write a disciplinary action against her. She responded so well to this teacher, she was one of a couple of students in her class that was sent to the countywide science competition. She thrived that year, but never again was she to have a professional teacher that made sure she got it!When Ann was 11, the ear doctor decided it was time for her left ear perforation to be repaired and that would restore her hearing in that ear. She had the surgery, but the hearing was never restored.Ann’s ability to learn was becoming more difficult. I pulled her out of traditional public school to home school her through public charter school. I wish I had another option as she didn’t always appreciate my... (shrink)

The emotional experience and the type of communication about cancer within the family are important factors for successful coping with pediatric oncology. The main purpose is to study mother’s and children’s emotional experiences concerning cancer, whether they communicate openly about the disease, and relationships between the type of communication and the different emotions expressed by the children. Fifty-two cancer patients aged 6–14 years and their mothers were interviewed in separate sessions about the two central themes of (...) the study: emotional experiences and type of communication. Analyses of response categories were performed to subsequently compare the age-groups and the mother–child responses. According to the results, mothers expressed emotions such as fear, sadness, or anxiety, while children report sadness, pain, but also happiness. Significant positive correlations were observed between mothers’ sadness and older children’s sadness, mothers’ anxiety and children’s fear, and mothers’ anxiety and children’s happiness. Regarding communication type, mothers tend to hide information about the disease from younger children and to provide direct information to the older children. Children usually prefer to communicate their concerns to parents; however, children whose mothers convey anxiety are more likely to prefer to communicate with others. These results support the idea that parents should talk honestly with their children, explaining their illness in an age-appropriate way, and encouraging them to share their emotional experiences. Further studies are needed from a developmental perspective to understand the disease management of children and families. (shrink)

Background: There are few standardized measures available to assess executive function in a naturalistic setting for children. The Children’s Cooking Task is a complex test that has been specifically developed to assess EF in a standardized open-ended environment. The aim of the present study was to evaluate the internal consistency, inter-rater reliability, sensitivity and specificity, and also convergent and divergent validity of the Norwegian version of CCT among children with pediatric Acquired Brain Injury and healthy controls.Methods: The present study (...) has a cross-sectional design, based on baseline data derived from a multicenter RCT. Seventy-five children with pABI from two university hospitals with parent-reported executive dysfunction and minimum of 12 months since injury/completed cancer therapy, as well as 59 HCs aged 10–17 years, were assessed with CCT using total errors as the main outcome measure. The pABI group completed tests assessing EF on the impairment level within the ICF framework, and on the participation level. In addition, they completed tests of intellectual ability, processing speed, attention, learning, and memory. Finally, overall functional outcome was evaluated for the children with pABI.Results: Acceptable internal consistency and good inter-rater reliability were found for the CCT. Children with pABI performed significantly worse on the CCT than the HCs. The CCT identified group membership, but the sensitivity and specificity were overall classified as poor. Convergent validity was demonstrated by associations between the CCT and performance-based tests assessing inhibition, cognitive flexibility, and working memory, as well as teacher-reported executive dysfunction. Divergent validity was supported by the lack of association with performance-based measures of learning and memory, attention, and verbal intellectual ability. However, there was a moderate association between the CCT and performance-based tests of processing speed. Lastly, better performance on the CCT was associated with a better functional outcome.Conclusion: Our study with a relatively large sample of children with pABI and HC’s demonstrated good psychometric properties of the CCT. CCT performance was associated with the overall level of disability and function, suggesting that CCT is related to the level of activity in everyday life and participation in society. Hence, our study suggests that the CCT has the potential to advance the assessment of EF by providing a valid analysis of real-world performance. Nevertheless, further research is needed on larger samples, focusing on predictors of task performance, and evaluating the ability of CCT to detect improvement in EF over time. The patterns of error and problem-solving strategies evaluated by the CCT could be used to inform neuropsychological rehabilitation treatmentand represent a more valid outcome measure of rehabilitation interventions. (shrink)

Multiple groups, including the National Bioethics Advisory Commission, the American Society of Clinical Oncology, the National Coalition of Comprehensive Cancer Centers, Workgroup 6 of the Summit Series on Cancer, PRIM&R, the Bell Report, and prominent ethicists have called for replacing the current system of local institutional review with central review for multisite national trials. We argue that this need is particularly acute in pediatric oncology, as shown by the experience of the Children's Oncology Group.

Hastings Center Report, Volume 51, Issue 5, Page 4-5, September‐October 2021.

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of health (...) care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of health (...) care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)