Javier R. Kane

Retinoblastoma: One World, One Vision

Retinoblastoma is curable when diagnosed early and treated appropriately; however, the prognosis is dismal when the basic elements of diagnosis and treatment are lacking. In developing countries, poor education, lower socioeconomic conditions, and inefficient health care systems result in delayed diagnosis and suboptimal care. Furthermore, the complexity of multidisciplinary care required is seldom possible. Whereas ocular salvage is a priority in the Western world, death from retinoblastoma is still a major problem in developing countries. To bring the 2 ends of this spectrum together and provide a forum for discussion, the “One World, One Vision” symposium was organized, at which clinicians and researchers from various cultural, geographic, and socioeconomic backgrounds converged to discuss their experiences. Strategies for early diagnosis in developing countries were discussed. Elements of the development of retinoblastoma centers in developing countries were discussed, and examples of successful programs were highlighted. An important component in this process is twinning between centers in developing countries and mentor institutions in high-income countries. Global initiatives by nongovernmental organizations such as the International Network for Cancer Treatment and Research, Orbis International, and the International Agency for Prevention of Blindness were presented. Treatment of retinoblastoma in developing countries remains a challenge; however, it is possible to coordinate efforts at multiple levels, including public administrations and nonprofit organizations, to improve the diagnosis and treatment of retinoblastoma and to improve the outcome for these children.

Use of epidural and peripheral nerve blocks at the end of life in children and young adults with cancer: the collaboration between a pain service and a palliative care service

Background:  Clinicians may avoid continuous pain blocks in pediatric cancer patients at the end of life for fear of complications or of interfering with the desired location of death.

Availability of palliative care services for children with cancer in economically diverse regions of the world

PURPOSE We assessed the availability and quality of palliative care for children with cancer according to national income per capita. METHODS We surveyed physicians who care for children with cancer using the Cure4Kids website (http://www.cure4kids.org). Queries addressed oncology practice site; reimbursement; specialised palliative care, pain management and bereavement care; location of death; decision-making support and perceived quality of care. Responses were categorised by low-, middle- and high-income country (LIC, MIC and HIC). RESULTS Of 262 completed questionnaires from 58 countries (response rate, 59.8%), 242 were evaluable (55%). Out-of-pocket payment for oncology (14.8%), palliative care (21.9%) and comfort care medications (24.3%) was most likely to be required in LIC (p<0.001). Availability of specialised palliative care services, pain management, bereavement care and institutional or national decision-making support was inversely related to income level. Availability of high-potency opioids (p=0.018) and adjuvant drugs (p=0.006) was significantly less likely in LIC. Physicians in LIC were significantly less likely than others to report high-quality pain control (p<0.001), non-pain symptom control (p=0.003) and emotional support (p=0.001); bereavement support (p=0.035); interdisciplinary care (p<0.001) and parental participation in decisions (p=0.013). CONCLUSION Specialised palliative care services are unavailable to children with cancer in economically diverse regions, but particularly in LIC. Access to adequate palliation is associated with national income. Programme development strategies and collaborations less dependent on a single countrys economy are suggested.

Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center.

BACKGROUND End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. METHODS We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white. RESULTS We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). CONCLUSION When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.

Changes in medical care at a pediatric oncology referral center after placement of a do-not-resuscitate order.

OBJECTIVE Parents may fear that a do-not-resuscitate (DNR) order will result in reduction of the level, quality, and priority of their childs medical care. We therefore assessed medical care that was continued, added, and discontinued after a DNR order was placed in the medical record. PATIENTS/METHODS Retrospective review of the charts of 200 pediatric oncology patients at St. Jude Childrens Research Hospital who died between July 1, 2001 and February 28, 2005, were younger than 22 years old at death, and had a documented DNR order. Medical interventions that were added (between the DNR order and death), continued (not discontinued between 24 hours before and 72 hours after DNR), and discontinued (within 72 hours after DNR) were identified and compared by using binomial proportions. RESULTS With the exception of chemotherapy, the studied medical interventions that patients were receiving at the time of the DNR order were continued in 66.7% to 99.3% of cases. Chemotherapy was continued in 33.3%. The most frequently added interventions were oxygen, steroids, and pain medicine. The most frequently discontinued interventions were laboratory draws, chemotherapy, antibiotics, and parenteral nutrition. CONCLUSIONS In this cohort of pediatric oncology patients, the medical interventions being received were continued with a high frequency after placement of a DNR order. Chemotherapy was continued only in a minority of patients, possibly signifying a shift in goals. These findings may help to reassure families that a DNR order need not result in a change in any of their childs medical therapies which appropriately advance the defined goals of care.

Balancing Disclosure of Diagnosis and Assent for Research in Children With HIV

CHILDREN COMPRISE A LARGE SUBGROUP OF PAtients with human immunodeficiency virus (HIV) infection, and their treatment must be defined by pediatric clinical trials. Children’s participation in research trials requires the fully informed consent of the parent or legal guardian, to whom most of the information is commonly directed. However, for nontherapeutic trials, the Code of Federal Regulations also requires that assent (the “affirmative agreement to participate in research”) be obtained from children at appropriate developmental ages. It also assigns to institutional review boards (IRBs) the duty to “determine that adequate provisions are made for soliciting the assent of the children . . . capable of providing assent.” Truly meaningful assent requires that children’s conditions be appropriately disclosed to them. However, disclosure of diagnosis to children with HIV is a complex issue that, when poorly managed, can cause harm to the child and family. For various reasons, parents may be reluctant to allow disclosure of HIV infection to their child. They often worry that children will not exercise discretion and that the child or family will be stigmatized. Cases of maternally transmitted HIV infection may be complicated by parental guilt and a desire to avoid further harm to the child through premature disclosure. Therefore, 3 important questions arise. Can a child who has reached the age of assent participate in pediatric HIV research without knowing his or her diagnosis of HIV or AIDS? What does “disclosure of diagnosis” mean in the context of pediatric HIV? What should be the response of a clinician or researcher when a parent of a child who has reached the age of assent will not agree to a developmentally appropriate process of disclosure? In this Commentary, we consider these questions and offer a practical stepwise disclosure method. Research Participation Without Knowing the Diagnosis

Ethical Decision Making about End-of-life Care Issues by Pediatric Oncologists in Economically Diverse Settings

Purpose: Pediatric cancer represents 1% to 4% of all cancers worldwide, with the majority of diagnoses in developing countries where mortality remains much higher than that in high-income countries. We sought to describe differences in ethical decision-making at the end of life among an international sample of pediatric oncologists practicing in countries with a variety of income levels and resource settings. Methods: Pediatric oncologists subscribing to an educational international oncology Web site were invited to complete a 38-item web-based survey investigating ethical domains related to end-of-life care: level of care, fiduciary responsibility, decision making, and justice. Results: Responses were received from 401 physicians in 83 countries, with most respondents practicing in middle-income or high-income countries. Significant differences in attitudes toward ethical issues existed across the national developmental indices. Conclusions: Further education on ethical principles is warranted in pediatric oncology, particularly among oncologists practicing in low-income or middle-income countries.