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)

Research exploring the needs of families of childhood cancer survivors is critical to improving the experiences of future families faced by this disease. However, there are numerous challenges in conducting research with this unique population, including a relatively high mortality rate. In recognition that research with cancer survivors is a relational activity, this article presents a series of cases of parents bereaved by childhood cancer who unintentionally received invitations to participate in survivorship research. We explore (...) six ethical considerations, and compare our experiences with that described previously. Our considerations include the sharing of confidential information with external parties to confirm past patients’ vital status and appropriate researcher responses to bereaved parents. The management of researchers’ emotional safety when working with illness populations and the fact that study invitations can elicit grief responses in non-bereaved families are discussed. To conclude, we argue for the benefits of inviting bereaved parents whose children died after treatment completion in survivorship research. Such parents’ early survivorship experiences will otherwise be systemically neglected. We argue that discussing complex cases can assist researchers to protect participants’ and researchers’ emotional well-being. We hope to contribute to the dearth of discussion about research operating procedures to address these issues. (shrink)

Childhood cancers are life-threatening diseases that affect not only the child but the whole family. Although rates of survival are high with modern therapy, childhood cancers are still serious and...

BackgroundIn childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was (...) to describe the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden.MethodsThis study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation.ResultsData was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows:Interprofessional well-being in team interactionson a team level;Professional comfort when dealing with moral challengeson a personal level; andImproved quality of care for the child and the familyon a care level.ConclusionsHealthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support. (shrink)

Refusing treatment for potentially curable childhood cancers engenders much discussion and debate. I present a case in which the competent parents of a young Amish child with acute myeloid leukemia deferred authority for decision making to the child’s maternal grandfather, who was vocal in his opposition to treatment. I analyze three related concerns that distinguish this case from other accounts of refused treatment.First, I place deference to grandparents as decision makers in the context of surrogate decision making more generally.Second, (...) the maternal grandfather’s ardent refusal of treatment and his rationale appeared to be inconsistent with the beliefs expressed by other family members and by members of the same Amish community, leading members of the medical team to question whether refusal of treatment should be treated differently when it appears to be based on the idiosyncratic beliefs of an individual rather than on community-wide values.Third, the medical team perceived tension and dissension between the nonverbal behavior of some family members and the verbal statements made by the maternal grandfather, leading the team to question the parents’ true wishes and debate how to weigh nonverbal and indirect forms of communication.Finally, building upon the conclusions of these queries, I explore whether, if the child’s prognosis was less favorable or if he were to relapse later, the maternal grandfather should have been permitted to drive a decision to refuse further treatment. (shrink)

The procedures for structuring clinical ethics case reflections in a childhood cancer care setting are presented, including an eight-step model. Four notable characteristics of the procedures are: members of the inter-professional health care team, not external experts, taking a leading role in the reflections; patients or relatives not being directly involved; the model explicitly addressing values and moral principles instead of focussing exclusively on the interests of involved parties; using a case-based rather than principle-based method. By discusing the (...) advantages and disadvantages of the proposed procedures, our paper aims to contribute to the literature on models and procedures for ethical analysis that can be used in clinical settings. It is suggested that our proposed procedures have some advantageous features when it comes to promoting health care staff’s learning to structure their thinking about ethical issues. (shrink)

The majority of the studies underlined how adolescent and young adult Cancer Survivors had no significant differences in their well-being and quality of life compared with a control group of healthy counterparts, although French et al. found less years of education among cancer survivors. The present study aimed at comparing AYA cancer survivors and a control group of peers who had no history of serious illness, in terms of well-being, cognitive functioning, and perceptions of life. Participants in (...) this study were 205 AYA cancer survivors, 126 males, off therapy from a mean of 10.87 years, with a mean age of 18.96, recruited during follow-up visits and healthy counterparts, matched for age and gender. They all completed self-report questionnaires: Ladder of Life, BSI-18 and Cognitive problems. Paired t test evidenced significant differences between survivors and controls in perceptions of quality of life regarding 5 years before the current time [t = −3.39; p = 0.001], with a lower level for childhood cancer survivors. Specifically, Hierarchical regression identified a shorter time since the completion of treatment and a trend of stem cell transplantation experience as factors associated with negative perception of precedent quality of life. The AYA cancer survivors reported lower cognitive difficulties than controls [t = −3.41; p = 0.001]: in memory [t = −4.52; p = 0.001], in concentration [t = −4.66; p = 0.001] and in mental organization skills [t = −2.56; p = 0.01], even if they had a lower educational attainment [X2 = 131.28; p = 0.001]. They showed similar satisfaction with their psychological well-being and their lives as healthy counterparts, except for past life perceptions associated with the cancer period. Important recommendations for future research and clinical suggestions could be given. (shrink)

As long-term childhood cancer survivors are at risk for late effects, ongoing medical care is crucial to detect and treat physical illnesses as early as possible. However, previous research from around the world has shown that many adult survivors did not participate in long-term medical follow-up. This study aimed to provide insight into German survivors’ care situation, with a particular focus on barriers to follow-up care. We investigated a sample of adult CCS drawn from the German Childhood (...) Cancer Registry’s oldest cohort. Our analyses included data from a standardized medical examination, a self-report questionnaire, and in-depth interviews with a subsample. Half of the participants reported participating in some kind of medical follow-up. In a logistic regression analysis, attendance of medical follow-up care was associated with higher age. Reasons for non-attendance were assigned to four categories: lack of information about medical follow-up and/or its purpose, termination by the health care provider, structural barriers, and emotional-motivational aspects. The interviews contributed to a better understanding of how these reported barriers played out in the care of individual survivors. Further, they revealed that some survivors currently in medical follow-up had had periods without follow-up care in the past—which were also in many cases related to a lack of information, both on the part of health care providers and CCS themselves. The results indicated that a large proportion of long-term CCS do not receive the recommended follow-up care. Further, there is a great need for more information regarding the aims of long-term medical follow-up and available offers. This is an important prerequisite for CCS to make informed decisions. (shrink)

This study aims to present the profile of scientific production on the use of religiosity/spirituality in coping with childhood cancer. It is an integrative review in the bases/libraries Cumulative Index to Nursing and Allied Health Literature, Psychology Information, Pubmed, Scientific Electronic Library Online, and Latin America and the Caribbean Literature on Health Sciences. The guiding question was “How is religiosity/spirituality present in the treatment experiences of children and adolescents with cancer?” By the inclusion/exclusion criteria, 31 studies were (...) retrieved. Most studies are from the United States; 2015 was the greatest publication year, and the participants in these surveys were children, adolescents, family members, and health professionals. Most studies did not specify what the participants’ belief was. Interviews were the most used collection instruments, and the hospital environment was the main place for recruiting the subjects. The data found provide significant information for understanding the profile of scientific production related to the investigation of religiosity/spirituality in the experiences of cancer by children and adolescents and point out possible paths for future investigations in the area. (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)

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)

This article concerns the problem of assessing selected body compo- sition parameters after completion of antitumor therapy and comparing them with the same parameters of healthy children. A high percentage of overweight and obesity, as well as abnormal fat distribution in convalescents with cancer shows a significant adverse effect of therapy on body composition and suggests the need for early intervention in terms of diet and exercise, which would help patients to quickly achieve the proper parameters of body composition. (...) Two main problems will be mentioned during the presented data analysis. Firstly, in each group there was a small number of observations. Because of this, the real differences between examined subgroups may have been omitted. Secondarily, many variables are correlated and are not normally distributed. Therefore, be- side the standard statistical tests to compare two groups, principal component analysis was applied to reduce the dimensions of the attribute space and to attempt to classify two groups of patients. (shrink)

This study concerns the problem of late complications of antineo-plastic therapy. Reduced parameters of the cardiorespiratory system in childhood may have a tremendous impact on health. In order to assess the selected parameters, to evaluate physical endurance, and compare the results with those obtained for healthy children, a test was carried out on a treadmill, until 80% of maximum pulse rate was reached. To compare the differences between the treatment group and the control group, three approaches were used. The (...) first one was the classical statistical inference, the second consisted in forming a multidimensional normal model and also involved modelling of the correlation between variables. The unstructured type of the working correlation matrix was chosen to obtain the results and correct standard errors. In the last approach, logistic regression was used to model the relationship between binary outcome and covariates, and to differentiate between the groups of patients on the basis of their cardiovascular parameters. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bringing Cancer Care to Those who Don't Have ItLawrence N. ShulmanI have been treating cancer patients in the Harvard Medical School hospitals since 1977, and in those 35 years we have made tremendous progress. Though work still needs to be done, and far too many patients still die of cancer, many are cured. In particular, children and young adults have a high rate of cure from (...) such diseases as Hodgkin's lymphoma, non-Hodgkin's lymphoma, acute lymphoblastic leukemia, and childhood sarcoma. Patients with breast cancer in the US have a greater than 80% chance for long-term survival. The death rate from cervical cancer in the US is very low. These results have been achieved by making diagnoses earlier, in many cases surgical excision, and often systemic therapies such as chemotherapy, hormonal therapy, radiation therapy, and more recently by using so-called "targeted" therapies—those directed at particular molecular characteristics of the cancer cells.Princess Dina Mired has said that the opportunity to survive cancer should not be an accident of geography. In cases where we already have effective and inexpensive tools to cure cancer, these treatments should be considered a basic human right, a life-saving medical service.I met Patty, a young woman living in the U.S. during November of her senior year in high school, after she discovered a small lump above her left collar bone. Though she felt entirely well, she called her primary care doctor who saw her the next day, felt the enlarged lymph node, and referred her to a surgeon, who did a biopsy later that week. Her primary care doctor also called me, and we scheduled a visit when the pathology results were available. The following week the pathologist notified Patty's pediatrician that the biopsy showed Hodgkin's lymphoma. When I met Patty, she was a bright and focused young woman, waiting to hear about her college applications and enjoying her senior year. Her cancer diagnosis was completely out of context with her life as she planned it, but with the support of her family and boyfriend, she seemed prepared to take things one step at a time. A PET CT scan demonstrated a modest mass in the mediastinum (chest), but no other disease. She was in an early stage of the disease with an excellent prognosis. We recommended and administered six months of chemotherapy with doxorubicin, bleomycin, vinblastine, and dacarbazine—four chemotherapy agents that are off-patent, and relatively inexpensive. She lost her hair, not a trivial issue for her, but otherwise felt reasonably well during the treatment. She was determined to graduate with her classmates, and was able continue to attend school and keep up with her work. In June, seven months into her cancer diagnosis and treatment, she graduated with honors, and was on track to enroll in college in September.Like other 18-year-old women with Hodgkin's lymphoma, Patty had an over 80% chance for cure with the potential for a long and productive life ahead of her because we could perform a biopsy, make a diagnosis, and safely and effectively treat her with four inexpensive, off-patent, chemotherapy drugs. She had nearly the same likelihood of living a long and fruitful life as her classmates, and had the same chances for childbearing. In my line of work, with the knowledge we now possess, to allow someone like Patty to die without a chance of curative care is simply unacceptable. Treatment of curable cancers should be considered on par with the right to clean water, adequate nutrition, treatment for infectious disease, and access to maternal and child healthcare services.But in many places in the world, people with cancers we could easily eradicate in Boston have no access to cancer services, and do die unnecessarily. The local healthcare infrastructure has no [End Page E10] capacity to evaluate a patient, perform or process a biopsy, make a diagnosis, or treat the patient with potentially curative surgery, chemotherapy and radiation. I have rounded on the wards of hospitals in developing countries, stopping to talk with numerous patients like Patty: young women, some of whom might have had Hodgkin's lymphoma, but no... (shrink)

Childhood cancer incidence is rising, affecting a growing proportion of elementary school students. For most of these children, school attendance can be limited by hospitalisations, treatments and side effects. However, little is yet known about the educational needs and experiences of this population. This phenomenological study explored the school experiences of 10 6- to 12-year-old children with cancer as they underwent chemotherapy. Results revealed perceptions that attending school in the hospital or home during cancer treatment is (...) essentially lonely, confusing and “different”. These perceptions intertwined to illuminate five themes: school should involve fun activities; group educational formats are preferable; old school is the “best school”; being a “good student” is important during treatment; and attending school is complicated during treatment. Therefore, hospital-based and homebound schooling programmes should integrate socially interactive and cognitively engaging curriculum to best support the learning needs of this population. (shrink)

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)

In recent decades the improved treatment of childhood cancer has increased the proportion of children being cured. However, the intensive treatment required also implies a heavy burden for the children and their families. The purpose of this article is to judge the ethical aspects of different treatment regimens used for children with cancer by means of a case study. The analysis is based on the ethical model by Beauchamp and Childress. The assessment is based on every person, (...) or group of persons, involved and is on the principles of autonomy, nonmaleficence, beneficence and justice. The analysis shows that intensification of treatment of children with cancer is ethically justified from a deontological point of view. The consequences are more difficult to anticipate from a utilitarian perspective. Au cours de plusiurs décennies les traitements plus efficaces des cancers des enfants ont augmentés la proportion des enfants guéris. Pourtant, le traitement intensif pose aussi un lourd fardeau aux enfants et leurs familles. Le but de cet article est d'évaluer les implications éthiques des différents traitements utilisés pour enfants souffrants de cancer, à l'aide d'une étude particulière. L'analyse éthique est basée sur le modèle de Beauchamp et Childress. L'évaluation est basée sur chaque personne ou sur les groupes de personnes impliqués, et sur les principes d'autonomie, nonmaléficence, bénéficence et justice. L'analyse montre que l'intensification du traitement des enfants souffrant de cancer est justifié éthiquement du point de vue déontologique. Les conséquences de ces actions sont plus difficiles à prévoir vue d'une perspective utilitaire. Die verbesserte Behandlung von Kinderkrebs in den vergangenen Jahrzehnten hat die Proportion der geheilten Kinder ansteigen lassen. Die intensive Behandlung bedeutet aber auch eine schwere Belastung für die Kinder und ihre Familien. Der Zweck dieses Artikels ist es, die ethischen Aspekte der verschiedenen Behandlungsmethoden bei Kinderkrebs durch eine Fallstudie abzuwägen. Die ethische Analyse basiert auf dem ethischen Modell von Beauchamp und Childress. Die Beurteilung berücksichtigt jede betroffene Person oder Personengruppe und beruht auf den Prinzipien der Selbstbestimmung, Schädlichkeit bzw. Unschädlichkeit, Nutzen und Verträglichkeit und Gerechtigkeit. Diese Analyse zeigt, dass die Intensivierung der Behandlung von krebskranken Kindem von einem deontologischen Standpunkt aus ethisch vertretbar ist. Die Folgen der Behandlung sind jedoch vom Nützlichkeitsgesichtspunkt her schwieriger vorauszusehen. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

Global health is at a crossroads. The 2030 Agenda for Sustainable Development has come with ambitious targets for health and health services worldwide. To reach these targets, many more billions of dollars need to be spent on health. However, development assistance for health has plateaued and domestic funding on health in most countries is growing at rates too low to close the financing gap. National and international decision-makers face tough choices about how scarce health care resources should be spent. Should (...) additional funds be spent on primary prevention of stroke, treating childhood cancer, or expanding treatment for HIV/AIDS? Should health coverage decisions take into account the effects of illness on productivity, household finances, and children's educational attainment, or just focus on health outcomes? Does age matter for priority setting or should it be ignored? Are health gains far in the future less important than gains in the present? Should higher priority be given to people who are sicker or poorer? Global Health Priority-Setting provides a framework for how to think about evidence-based priority-setting in health. Over 18 chapters, ethicists, philosophers, economists, policy-makers, and clinicians from around the world assess the state of current practice in national and global priority setting, describe new tools and methodologies to address establishing global health priorities, and tackle the most important ethical questions that decision-makers must consider in allocating health resources. (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)

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)

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)

BackgroundVaccination against human papillomavirus (HPV) is a pivotal tool for preventing a significant cause of cervical cancer. One particular culturally recognized context associated with negative attitudes toward the HPV vaccine is the religiousness of parents. However, relatively speaking, there remains a scarcity of studies that have focused specifically on religious groups, especially non-Christian groups. PurposeTo better understand the basis for members of an ultra-Orthodox Jewish community to object to the HPV vaccine and how such objections can and cannot be (...) reduced, thereby improving cultural competence—namely, the cultural understanding and ethical addressing of HPV vaccination refusal. MethodsThis qualitative study conducted semi-structured interviews with ten Israeli ultra-Orthodox mothers who are opposed to administering the HPV vaccine to their daughters. The content analysis addressed these results and extracted the major issues arising from these particular interviews. ResultsFour main novel insights were found pertaining to the negative stance toward HPV vaccination among mothers in an ultra-Orthodox Jewish community: (a) lack of knowledge about the HPV vaccine is not part of the reasoning against it; (b) rabbinical authority might have a lesser influence than expected for the moderation of HPV vaccine refusal; (c) complicated viewpoints regarding childhood vaccination may be the larger non-moderating context for HPV vaccination refusal; and (d) cultural competence is important for the ability to change the negative attitudes toward HPV vaccination. ConclusionsThe study may improve cultural competence regarding HPV vaccination and contribute to decreasing objections to the HPV vaccine in ultra-Orthodox communities. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Invisible HarmKimberly ZieselmanI’m a 48–year–old intersex woman born with Androgen Insensitivity Syndrome (AIS) writing to share my personal experience as a patient affected by a Difference of Sex Development (DSD). Although I appear to be a DSD patient “success story”, in fact, I have suffered and am unsatisfied with the way I was treated as a young patient in the 1980’s, and the continued lack of appropriate care for (...) intersex people even today.As the Executive Director of the advocacy organization Advocates for Informed Choice and a board member of the AIS–DSD Support Group since 2012, I have heard doctors reference the “silent happy majority” of DSD patients all too often. They speak [End Page 122] of patients who were treated in childhood and went on to live (seemingly) contented lives. It appears however that doctors have drawn this conclusion from the fact that most of their patients have not returned to complain about their treatment. While there is little evidence to support the success doctors claim, there is quite a bit of evidence that suggests my suffering is the norm rather than the exception.Medical professionals would likely include me in that “silent majority,” only seeing a woman who identifies and appears typically female, graduated law school, married for over twenty years, with adopted children and a successful career. And while I have been fortunate in many ways, I no longer want my voice to be presumed buried within that silent majority. Instead, I am speaking out today to tell my story.My StoryAt age 15 I was diagnosed with amenorrhea and referred to a reproductive oncologist who told my parents I had a partially developed uterus and ovaries that would likely soon become cancerous. We were told my vagina was abnormally short and might require surgery in order to have heterosexual intercourse.Neither my parents nor I was ever told I had AIS and XY chromosomes, or that the gonads being removed were testes, not ovaries. I was told I needed a “full hysterectomy” to prevent cancer and hormone replacement therapy. That summer I spent my 16th birthday recuperating from surgery. I spent the next 25 years living a lie.A lie that has had a profound and harmful impact on me.At some level, I knew I was not being told the whole truth. My parents’ and the doctors’ actions signaled to me something more might be going on. But I was afraid to ask questions; my parents were distressed and I didn’t want to cause them any more pain. Over the years I have wondered just how much my parents knew but withheld from me (albeit with good intentions). I sensed something awful was being hidden from me, and I didn’t know whom I could trust.When I asked my doctor if I could meet someone else with my condition, I was told I was different, that there was “nobody” with my medical condition in the world, that my situation was “very rare.” I was told to get on with my life and not talk about my surgery because it wasn’t important; I was healthy and could adopt if I wanted to become a parent. I was told I must take a hormone pill each day for the rest of my life to stay healthy.But what I heard was, “you are not a real woman: you are a damaged freak, so go out and fake the rest of your life and be sure nobody knows your secret.” So that’s what I did. I was a “good girl” and took my pills, didn’t ask questions and did what the men in white coats asked me to do. There was no support provided for either my parents or me. No social workers, no therapists. Perhaps most shockingly, there was no true informed consent.A few years ago I was diagnosed with post-traumatic stress syndrome caused by anxiety I had been harboring for over two decades about my past surgery and fear of getting cancer. I decided to obtain my medical records from the hospital and discover the truth.Covering several pages of... (shrink)

Cortisone, initially known as ‘compound E’ was the medical sensation of the late 1940s and early 1950s. As early as April 1949, only a week after Philip Hench and colleagues first described the potential of ‘compound E’ at a Mayo Clinic seminar, the New York Times reported the drug’s promise as a ‘modern miracle’ in the treatment of rheumatoid arthritis. Given its high profile, it is unsurprising that historians of medicine have been attracted to study the innovation of cortisone. It (...) arrived at the end of a decade of ‘therapeutic revolutions’, kicked off by penicillin transforming the treatment of bacterial infections and ending with hopes of a revolution in the treatment of non-infectious, chronic inflammatory diseases. Despite these studies of cortisone’s introduction, few historians have taken the story forward and considered how cortisone was adopted and adapted into clinical practice. This article tells the longer of how the drug and its derivatives were taken from research laboratories and integrated into clinical practice; what has in recent decades become known as translational medicine. In exploring cortisone’s first decade in Britain, we focus specifically on its role in the treatment of RA. Our approach is always to consider cortisone’s use in the context of other treatments available to clinicians, and at local and national institutional settings. We do not discuss the many other therapeutic uses of cortisone, which ranged for topical applications for skin diseases to the management of cancers, especially childhood leukaemia, nor do we discuss its close analogue ACTH—AdenoCorticoTropic Hormone. We think there are lessons in our study for TM policies today. (shrink)

Cortisone, initially known as ‘compound E’ was the medical sensation of the late 1940s and early 1950s. As early as April 1949, only a week after Philip Hench and colleagues first described the potential of ‘compound E’ at a Mayo Clinic seminar, the New York Times reported the drug’s promise as a ‘modern miracle’ in the treatment of rheumatoid arthritis. Given its high profile, it is unsurprising that historians of medicine have been attracted to study the innovation of cortisone. It (...) arrived at the end of a decade of ‘therapeutic revolutions’, kicked off by penicillin transforming the treatment of bacterial infections and ending with hopes of a revolution in the treatment of non-infectious, chronic inflammatory diseases. Despite these studies of cortisone’s introduction, few historians have taken the story forward and considered how cortisone was adopted and adapted into clinical practice. This article tells the longer of how the drug and its derivatives were taken from research laboratories and integrated into clinical practice; what has in recent decades become known as translational medicine. In exploring cortisone’s first decade in Britain, we focus specifically on its role in the treatment of RA. Our approach is always to consider cortisone’s use in the context of other treatments available to clinicians, and at local and national institutional settings. We do not discuss the many other therapeutic uses of cortisone, which ranged for topical applications for skin diseases to the management of cancers, especially childhood leukaemia, nor do we discuss its close analogue ACTH—AdenoCorticoTropic Hormone. We think there are lessons in our study for TM policies today. (shrink)

Cortisone, initially known as ‘compound E’ was the medical sensation of the late 1940s and early 1950s. As early as April 1949, only a week after Philip Hench and colleagues first described the potential of ‘compound E’ at a Mayo Clinic seminar, the New York Times reported the drug’s promise as a ‘modern miracle’ in the treatment of rheumatoid arthritis. Given its high profile, it is unsurprising that historians of medicine have been attracted to study the innovation of cortisone. It (...) arrived at the end of a decade of ‘therapeutic revolutions’, kicked off by penicillin transforming the treatment of bacterial infections and ending with hopes of a revolution in the treatment of non-infectious, chronic inflammatory diseases. Despite these studies of cortisone’s introduction, few historians have taken the story forward and considered how cortisone was adopted and adapted into clinical practice. This article tells the longer of how the drug and its derivatives were taken from research laboratories and integrated into clinical practice; what has in recent decades become known as translational medicine. In exploring cortisone’s first decade in Britain, we focus specifically on its role in the treatment of RA. Our approach is always to consider cortisone’s use in the context of other treatments available to clinicians, and at local and national institutional settings. We do not discuss the many other therapeutic uses of cortisone, which ranged for topical applications for skin diseases to the management of cancers, especially childhood leukaemia, nor do we discuss its close analogue ACTH—AdenoCorticoTropic Hormone. We think there are lessons in our study for TM policies today. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Doctor at War, Doctor Washing FeetLuke MillerThis man is any one of my patients. Cancer is in his body, he has been told, and now this story has become connected with some fact of bodily functioning. The tumor is now in his brain, the MRI report says, and now some weakness, headache, confusion, or dimming of his sight corroborates this finding. In the white–walled clinic room he speaks (...) with me, the resident doctor, as the attending doctor studies the pictures of his brain on a computer screen. He sits on the edge of the examining table, and his wife, or daughter, or concerned friend looks on. She is the one with the anxious face, the tightened lips; he is more open and still, relaxed into his position, sitting on the edge of this table in this white room, as the cancer sits inside him, growing and changing.The neurologic exam starts from the head and works its way down, to the very end of the big toes; at least, that is how I was taught to perform it, and that is how it is organized in my mind, so that is how I must carry it out. There is the high-est—the thinking skills that process the world and express it in intelligible language—and the lowest, the most distant nerves I imagine as simple conduits of a binary signal: off or on, yes or no. My exam, however, betrays this simple hierarchy of nerves. In everything I measure, there is some [End Page 202] participation of high and low, of brain and distant simple nerve.Two years bridged college and medical school. I lived in Rome for four months during this time, learning Italian, visiting churches large (Saint Peter’s, San Paolo Fuori le Mura) and small (San Carlo alle Quattro Fontane, Santa Maria della Vittoria). I had graduated from a small Midwestern Mennonite college, where most of the people I passed and greeted on campus every day were my friends (and relatives, given the tight–knit ethnic heritage of most Mennonites in the United States.) In my previous travel to Europe I had been studying Mennonite history with a class, tracing the stories of the Anabaptist martyrs, the ancestors of the Mennonites, and the centuries of persecution that started in the time of the Reformation and stretched to living memory. In my childhood their stories had mixed with stories from the Bible: the fires of the faithful burned at the stake, the tongue screws to keep them from witnessing to their beliefs as they burned, the Anabaptist prisoner who turned back during his own escape across a frozen river to save his drowning pursuer, giving his own life for his enemy’s, like Christ. We are not a people of war, these stories taught us; we are a people of God’s peace. We are not a people of this world, we were taught; my ancestors emigrated to Russia and North America to found their own separate communities to live out their vision of God’s kingdom on the earth. We are citizens of a country, but do not pledge allegiance to a national flag. We will give our lives to save others, even our enemies, we are taught, but will not kill or do violence even to protect our own. In my travels after college, my story, the martyr stories, the story of my small people, seemed so minor next to the beauty of Rome, the aqueducts, fountains, bright mosaics, ancient churches made of heavy stone.New images and new stories continued to fill my world as I began medical school. In a single afternoon’s lecture the embryo became a blastocyst, and then exploded into a multitude of cells, folding as it grew. “My” cadaver, opened with a simple blade, presented new lessons for me every day: nerves to trace, organs to map, muscles and vessels to name. Inside the whole, the human, were a hundred organs, each with its own secrets and sicknesses, a trillion cycling cells.Mennonites wash feet. It’s a ritual, or as close as a non–sacramental, non–clerical community might have to a ritual. We do... (shrink)

Rudolf Steiner, the often undervalued, multifaceted genius of modern times, contributed much to the regeneration of culture. In addition to his philosophical teachings, he provided ideas for the development of many practical activities including education--both general and special--agriculture, medicine, economics, architecture, science, religion, and the arts. Today there are thousands of schools, clinics, farms, and many other organizations based on his ideas. Steiner's original contribution to human knowledge was based on his ability to conduct spiritual research, the investigation of metaphysical (...) dimensions of existence. With his scientific and philosophical training, he brought a new systematic discipline to the field, allowing for conscious methods and comprehensive results. A natural seer from childhood, he cultivated his spiritual vision to a high degree, enabling him to speak with authority on previously veiled mysteries of life. Topics include: true human nature as a basis for medical practice; the science of knowing; the mission of reverence; the four temperaments; the bridge between universal spirituality and the physical; the constellation of the supersensible bodies; the invisible human within us: the pathology underlying therapy; cancer and mistletoe, and aspects of psychiatry; case history questions: diagnosis and therapy; anthroposophic medicine in practice: and three case histories. (shrink)

When positionally cloned in late 1989, it was anticipated that mutations within the Wilms' tumour suppressor gene (WT1) would prove responsible for this common solid kidney cancer of childhood. Characterisation of the WT1 expression pattern and of the structure of the encoded protein isoforms and their mode of action has now spanned almost a decade. WT1 proteins act as nucleic acid-binding zinc finger-containing transcription factors involved in both transactivation and repression. These activities are facilitated and constrained by interactions (...) with other proteins. Expression analyses and knockout mice indicate that WT1 protein plays a critical role in normal kidney and gonad development. Specific constitutional WT1 mutations results in several urogenital anomaly syndromes. While only 10% of sporadic Wilms' tumours do display WT1 mutation, WT1 is mutated in other cancers, including acute myeloid leukaemia. Much is still to be determined in WT1 biology. The next decade will see at least three streams of attention. The first two, elucidation of the role of WT1 in RNA metabolism and the characterisation of further protein partners, may together explain the distinct tissue-specific functions of WT1. Finally, further research into the role of WT1 in haematopoiesis will improve our understanding of WT1 in leukaemia. BioEssays 21:191-202, 1999. (C) 1999 John Wiley & Sons, Inc. (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)

In 1939, just before graduating from high school in the small town of Ridgeway in northeast Iowa, Everett Kuntz spent his entire savings of $12.50 on a 35mm Argus AF camera. He made a camera case from a worn-out boot, scraps from a tin can, and a clasp from his mother’s purse. For the next several years, especially during the summers when he worked on his parents’ dairy farm, he clicked the shutter of his trusty Argus all around the quiet (...) town. Everett bought movie reel film in bulk from a mail-order house, rolled his own film, and developed it in a closet at home, but he never had the money to print his photographs. More than two thousand negatives stayed in a box while he married, raised a family, and worked as an electrical engineer in the Twin Cities. When he became ill with cancer in the fall of 2002—sixty years after he had developed the last of his bulk film—Everett opened his time capsule and printed the images from his youth. He died in 2003, having brought his childhood town back to life just as he was leaving it. A sense of peace radiates from these images. Whether skinny-dipping in the Turkey River, wheelbarrow-racing, threshing oats, milking cows, visiting with relatives after church, or hanging out at the drugstore or the movies, Ridgeway’s hardworking citizens are modest and trusting and luminous in their graceful harmony and their unguarded affection for each other. Visiting the town in 2006 as he was writing the text to accompany these photographs, Jim Heynen crafted vignettes that perfectly complement these rediscovered images by blending fact and fiction to give context and voice to Ridgeway’s citizens. (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)