Journal of Pediatric Oncology Nursing current issue

A Call to Action

Hobbie, W. L., Ogle, S. — Fri, 16 Oct 2009 13:06:48 PDT

The Legacy of Pediatric Oncology Nursing in Advancing Survivorship Research and Clinical Care

Ruccione, K. — Fri, 16 Oct 2009 13:06:48 PDT

Today, the growing population of cancer survivors, both pediatric and adult, along with the accumulated weight of data characterizing late and lingering effects of cancer and its treatment are attracting attention in the form of reports, conferences, publications and media coverage.The emphasis on survivorship research and outcomes-based clinical care began with pediatric oncology, and pediatric oncology nurses have been at the forefront of survivorship clinical care, research, and education for more than 30 years.This article highlights these contributions to the body of survivorship knowledge and quality of care, as well as areas of ongoing challenge and future directions suggested by thought leaders in our specialty. Key contributions are examined decade by decade and against the six recommendations for health care policy and practice delineated in the two recent IOM survivorship reports: evidence-based guidelines for follow-up care, standards and models of care, increasing awareness of late effects and needed follow-up care, improving professional education and training, improving access to care for survivors, and increasing research to prevent or manage late effects.

Brain Tumor Survivors Speak Out

Carlson-Green, B. — Fri, 16 Oct 2009 13:06:48 PDT

Although progress has been made in the treatment of childhood brain tumors,work remains to understand the complexities of disease, treatment, and contextual factors that underlie individual differences in outcome. A combination of both an idiographic approach (incorporating observations made by adult survivors of childhood brain tumors) and a nomothetic approach (reviewing the literature for brain tumor survivors as well as childhood cancer survivors) is presented. Six areas of concern are reviewed from both an idiographic and nomothetic perspective, including social/emotional adjustment, insurance, neurocognitive late effects, sexuality and relationships, employment, and where survivors accessed information about their disease and treatment and possible late effects. Guidelines to assist health care professionals working with childhood brain tumor survivors are offered with the goal of improving psychosocial and neurocognitive outcomes in this population.

Transitioning Survivors of Central Nervous System Tumors: Challenges for Patients, Families, and Health Care Providers

Eshelman-Kent, D., Gilger, E., Gallagher, M. — Fri, 16 Oct 2009 13:06:48 PDT

Survivors of central nervous system tumors (SCNST) are a growing group of cancer survivors who require risk-based, long-term health care due to the chemotherapy, surgery, and radiation they have received.Although treatment strategies are being developed to reduce morbidity and mortality, ultimately this subgroup of pediatric cancer survivors often faces moderate to severe late effects of their treatment.As a result, they will need lifelong health care that includes risk-based health care due to cancer treatment exposures as well as primary adult health care, including primary and secondary preventative care. The best way to accomplish lifelong health care for SCNST as they enter adulthood is not clearly defined. In this article, the authors plan to (1) present an overview of the complexities of health care problems that make transition challenging for SCNST; (2) review the evolving transition literature; (3) explore the barriers to successful transition; (4) discuss methods to facilitate transition; (5) describe approaches, strategies, and models for survivorship care in SCNST; (6) present issues for consideration when transitioning SCNST; and (7) provide information on transition-related resources.

Endocrine Late Effects in Survivors of Pediatric Brain Tumors

Shaw, S. — Fri, 16 Oct 2009 13:06:48 PDT

Central nervous system tumors are the most common solid tumor diagnosed in children under the age of 14 years. Chronic health conditions related to endocrine and metabolic late effects are one of the most common medical late effects seen in childhood cancer survivors. Over the past 2 decades, outcomes have improved significantly for children diagnosed with a brain tumor. Curative therapy for childhood brain tumors survivors places them at significant risk for complex multi-organ medical late effects.These late effects can create a negative effect on cognition, growth, organ function, body image, sexual function and quality of life. Treatment related complications can occur many years after completion of therapy. Close monitoring is necessary so that early detection and intervention can hopefully decrease the full negative impact of many of these effects. Lifelong medical surveillance with a multidisciplinary team approach is essential to maximize health and improve the quality of life of survivors of pediatric brain tumors.

Exploring Family Management of Childhood Brain Tumor Survivors

Deatrick, J. A., Mullaney, E. K., Mooney-Doyle, K. — Fri, 16 Oct 2009 13:06:48 PDT

Family management of childhood chronic conditions consists of 6 family factors: (1) the family’s view of the child’s daily life, (2) the impact of the condition on family life, (3) the difficulty of family life, (4) the family’s effort managing the child’s condition, (5) the family’s ability managing the child’s condition, and (6) parental mutuality. Recently, the Family Management Measure (FaMM), which measures family management of children with chronic conditions (excluding cancer), was validated. The purpose of this descriptive study was to examine the comparability of these 6 factors in families with childhood brain tumor survivors. First, 14 advanced practice nurses who are experts in neuro-oncology and survivorship rated items on the FaMM as relevant and clear to families of brain tumor survivors. Second, 22 cognitive interviews with parents of brain tumor survivors described family management as comparable with families of children with other chronic illness. In this report, 2 hypothetical, contrasting case studies of family management are used to illustrate family management within the context of brain tumor survivors.