Journal of Pediatric Oncology Nursing recent issues

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.

Management of Procedural Sedation in Varying Practice Settings

Kline, N. E. — Wed, 02 Sep 2009 14:25:13 PDT

Nutritional Assessment of Children With Cancer

Mosby, T. T., Barr, R. D., Pencharz, P. B. — Wed, 02 Sep 2009 14:25:13 PDT

Regardless of which parts of the world they live in, most children will develop and grow at a similar rate if proper nutrition is ensured. Children from developing countries are at risk for primary malnutrition. Children undergoing anticancer therapy are at higher risk for secondary malnutrition, including obesity and growth retardation. Periodic nutritional assessments are important for planning effective dietary interventions for such children. In this review, we describe malnutrition as it occurs in children with cancer and various ways of assessing the nutritional status of these children, depending on the availability of resources in their local hospitals. Objective and subjective data should be used to complete the nutritional assessment. We discuss screening methods, including the use of subjective global assessment. Different parts of nutritional assessment include medical history; physical examination; biochemical and hematological data, such as visceral proteins, blood glucose levels, and lipid profiles, hemoglobin and hematocrit, and the lymphocyte count; anthropometric measurements; and food and nutrition history. We review medical tests and procedures to determine nutritional status, including nitrogen balance, delayed cutaneous hypersensitivity, prognostic nutritional index, creatinine height index, maldigestion and malabsorption tests, indirect calorimetry, and dual energy X ray absorptiometry (DXA scan). Evaluation and interpretation of data and estimation of nutritional risk are discussed, including proper techniques and use of anthropometric measures, selection and use of growth charts, calculation of caloric and protein needs, and the percentage of calories ingested. These methods will enable local health care providers to accurately assess the nutritional status of children with cancer, identify children at risk, and plan adequate nutritional interventions.

Chemotherapy-Related Side Effects in Childhood Acute Lymphoblastic Leukemia in Indonesia: Parental Perceptions

Wed, 02 Sep 2009 14:25:13 PDT

Noncompliance with prescribed medication has been associated with increased chance of relapse and poor outcome. Side effects may be an important cause of noncompliance. Fifty-one parents of children with acute lymphoblastic leukemia in a tertiary care hospital in Indonesia were interviewed about their perception of side effects and their impact on treatment noncompliance and daily activities. A symptom checklist assessing 13 common symptoms was used to examine side effects. During chemotherapy, childhood acute lymphoblastic leukemia patients suffered from psychological as well as physical side effects. The most frequent side effect reported by parents was behavior alteration (92%). Second and third in frequency were increased appetite and infections, reported by 88% and 83% of parents, respectively. The most severe side effects were leg weakness, increased appetite, and behavior alteration. The overall frequency of side effects was weakly correlated to noncompliance. Reducing the impact of side effects may increase compliance with the treatment.

The Role of 131I-MIBG in High-Risk Neuroblastoma Treatment

Lessig, M. K. — Wed, 02 Sep 2009 14:25:13 PDT

Despite aggressive research and treatment, high-risk neuroblastoma continues to have a devastating mortality rate of more than 40%. Research conducted over the past 2 decades has shown that the radioisotope ¹³¹I-MIBG (metaiodobenzylguanidine) is effective in the treatment of this difficult patient population. The purpose of this article is to review the diagnosis, staging, and conventional treatment of neuroblastoma and to understand the mechanism of action of MIBG and ¹³¹I-MIBG. This article also reviews treatments for high-risk neuroblastoma patients and analyzes recent research studies that used ¹³¹I-MIBG to better define the role of this treatment in high-risk neuroblastoma patients. In addition, this article explores the role of the advanced practice nurse to serve at the forefront in the implementation of a multidisciplinary ¹³¹I-MIBG treatment program.

Moderate Intravenous Sedation With Fentanyl and Midazolam for Invasive Procedures in Children With Acute Lymphoblastic Leukemia

Mantadakis, E., Katzilakis, N., Foundoulaki, E., Kalmanti, M. — Wed, 02 Sep 2009 14:25:13 PDT

Data were collected prospectively on 100 consecutive invasive procedures, that is, lumbar and bone marrow punctures (alone or in combination), in 16 patients less than 21 years of age with acute lymphoblastic leukemia (ALL). Efficacy of sedation and the need for restraint were graded according to 2 multiple-point scales. All invasive procedures were successfully performed. Oxygen by face mask was needed in 5 cases, whereas no patient required sedation reversal; 92% of the time, the patient was calm, cooperative, and responding to verbal commands, whereas in 97 procedures, there was no or only minimal patient movement that did not interfere with the completion of the procedure. Inpatient administration of midazolam and fentanyl by trained pediatric providers is safe and effective for invasive procedures in children and adolescents with ALL.

A Brief Report of Caregiver Needs and Resource Utilization During Pediatric Hematopoietic Stem Cell Transplantation

Wed, 02 Sep 2009 14:25:13 PDT

Hematopoietic stem cell transplantation (HSCT) is used to eradicate disease and restore normal hematopoietic, immunologic, and/or metabolic functioning. HSCT is a complex treatment that is physiologically and psychologically demanding on the recipient, caregiver, and family. The purpose of this study was to identify needs and resources of family caregivers of pediatric HSCT recipients during the first year after transplant. Parental caregivers (n = 161) completed an online survey. The most cited sources of information were the HSCT team (87.7%), books and other print materials (83.1%), and the Internet (81.5%). However, more than half of the respondents reported that finding resources and services was a problem. More than half identified managing the emotional and social impact of the transplant on their child, posttransplant and follow-up care, practical strategies for caregiving, maintaining the family, and taking care of themselves during this first year as important topics to address. Adequately and regularly assessing caregiver and family needs and providing resources to meet those needs, especially during transitions in care, are important components of transplant care.

Coping With Cancer: A Web-Based Educational Program for Early and Middle Adolescents

O'Conner-Von, S. — Wed, 02 Sep 2009 14:25:13 PDT

Educating patients is a primary responsibility of all nurses; however, because of time constraints and staff shortages, pediatric oncology nurses are often unable to adequately prepare patients for cancer treatment. Instead, patients frequently rely on the Internet as a source of information about cancer, some of which can be outdated and inaccurate. Adolescents regard the Internet as a valuable source of health information as it is easily accessible, less threatening, and confidential. Considering the need for accurate, readily available information for adolescents with cancer, the purpose of this study was to develop and validate an innovative, interactive Web-based educational program to prepare early and middle adolescents for cancer treatment. Titled "Coping With Cancer," this program was developed by the investigator after conducting in-depth interviews of adolescent cancer survivors and their parents. Based on the transactional model of coping, the program focuses on enhancing the adolescent’s knowledge of cancer, cancer treatment, and healthy coping strategies. Coping With Cancer can be an effective resource for pediatric oncology nurses in providing ongoing education for adolescents with cancer.

Implementation of an Oral Care Protocol and Its Effects on Oral Mucositis

Hogan, R. — Fri, 29 May 2009 14:59:46 PDT

Oral complications are commonly seen in pediatric oncology patients. Induced by chemotherapy or radiation, oral mucositis is a debilitating side effect that has much clinical significance. Oral mucositis may decrease the effectiveness of treatment as well as decrease the quality of life in the pediatric oncology patient. Therefore, it is our responsibility as health care professionals to reduce the incidence and/or severity of mucositis as much as possible. One intervention that has been proven to be successful is basic oral hygiene implemented through an oral care protocol. It is important that nurses are educated on the significance of adequate dental hygiene and the process and need for institutional change of protocols. Nurses and other health care professionals can positively influence patient care by incorporating the evidence-based practice of an oral care protocol— improving consistency of care while promoting an intervention of proven benefit against oral mucositis.

Diagnostic Dilemma: Solitary Fibrous Tumor or Hemangiopericytoma of the Submandibular Region in a Patient with Multiple Odontogenic Keratocysts

Garg, D., Palaskar, S., Shetty, V. P., Bhushan, A., Bhatia, P., Sarin, J. — Fri, 29 May 2009 14:59:46 PDT

Solitary fibrous tumors (SFTs) are rare spindle cell neoplasms that originate from mesothelial-lined surfaces, mainly the pleura and peritoneum. SFT is a distinctive mesenchymal neoplasm of the pleura but can be found in extrapleural sites. The treatment of SFT is simple excision or wide local resection. This is the case study of a 14-year-old girl who presented with a large diffuse swelling in the left submandibular region, ultimately diagnosed with SFT and surgically excised.

Proton Beam Radiation Therapy in the Treatment of Pediatric Central Nervous System Malignancies: A Review of the Literature

Semenova, J. — Fri, 29 May 2009 14:59:46 PDT

One of 5 pediatric cancers occurs within the central nervous system. Although outcomes have improved, the greatest challenge with these patients remains the balance between cure and long-term morbidity. Patients who have undergone radiation therapy remain at high risk for developing a multitude of severe long-term sequelae. As radiation therapy remains a mainstay of treatment much attention has gone into improving its quality and precision. Multiple options exist for these patients, including conventional photon radiotherapy, conformal radiation, and now, proton beam radiotherapy. Proton beams are able to provide utmost precision for targeting the site of the tumor while decreasing radiation doses to surrounding tissues. Studies are showing that the benefits of proton therapy surpass both conventional radiation as well as conformal radiation therapy, and as a result medical centers around the United States are working to open more facilities and improve patient access. As research becomes more readily available and new centers open, pediatric patients will have the option to be treated with this technology in order to preserve cognitive function and decrease long-term effects.

Specialized Summer Camp for Children with Cancer: Social Support and Adjustment

Conrad, A. L., Altmaier, E. M. — Fri, 29 May 2009 14:59:46 PDT

The purpose of this study was to assess the types of social support received by children attending a week-long residential summer camp for children with cancer. Following the camp, families were sent a social support questionnaire (for the child to complete) and the Child Behavior Checklist (for parents to complete). Analyses evaluated children's adjustment rated by parents, support reported by children, and the relationship between adjustment and support. Girls reported receiving more support than boys, and both genders reported receiving more support at camp than children in the general population. Ratings of adjustment were not different from normative data for boys or girls. No relationship was found between adjustment and support. The camp environment is very supportive and may offer forms of support not available in other environments. Research is needed to further understand how camp can be supportive, what factors may affect that support, and how the experience enhances children's quality of life.

Behavioral Inhibition and Its Relation to Anxiety and Depression Symptoms in Adolescents With Sickle Cell Disease: A Preliminary Study

Carpentier, M. Y., Elkin, T. D., Starnes, S. E. — Fri, 29 May 2009 14:59:46 PDT

Several investigations have found support for the role of behavioral inhibition in the etiology of childhood anxiety and depression disorders. However, nothing is known about how this relation extends to children with a chronic, life-threatening illness. The purpose of the current study was to examine behavioral inhibition and its relation to anxiety and depression symptoms among 30 adolescents with sickle cell disease (SCD). Adolescents with SCD and their primary caregivers completed instruments assessing demographic information, behavioral inhibition, and anxiety and depression symptoms. A majority of adolescents with SCD classified themselves as middle or low on behavioral inhibition. Adolescents with SCD who classified themselves as high on behavioral inhibition displayed higher levels of anxiety and depression than adolescents with SCD who classified themselves as low on behavioral inhibition; adolescents with SCD endorsing the middle behavioral inhibition category generally scored in between. These data extend previous work with healthy children and adolescents and suggest that early and continued assessment of behavioral inhibition may be important in preventing adverse psychological outcomes among a group that is already at risk for internalizing disorders.

Qualitative Analysis of the Role of Culture in Coping Themes of Latina and European American Mothers of Children With Cancer

Fri, 29 May 2009 14:59:46 PDT

It has been well established that mothers of children diagnosed with cancer experience high levels of distress. Latina mothers may be at risk for higher levels of distress related to language barriers, cultural factors, and economic, immigration, and acculturation stressors. Despite the increasing US Latino population, few studies have examined the role of culture within pediatric oncology, including how mothers cope with their child's cancer. This study used qualitative analysis of 24 sessions from 3 Latina and 3 European American mothers of children recently diagnosed with cancer. The session transcripts were divided into a total of 2328 thought segments that were then analyzed for themes using a collaborative iterative process. Analysis identified 9 shared coping themes that included, with some variations: gathering information, professional help-seeking, activities, problem solving, positive thinking, present orientation, reframing, avoidance, and religion. Three themes were culture specific: only European American mothers discussed compromise, whereas normalization and perspective taking were unique to the Latina mothers and suggest that the cultural value of simpatía influences coping. Clinical and research recommendations are discussed.

Pain Control at the End of Life for Children With Cancer

Kline, N. E. — Tue, 07 Apr 2009 18:01:37 PDT

Parental Fears Following Their Child's Brain Tumor Diagnosis and Treatment

Anclair, M., Hoven, E., Lannering, B., Boman, K.K. — Tue, 07 Apr 2009 18:01:37 PDT

The objective of this study is to portray the ill- ness-related threats experienced by parents of children after the diagnosis of central nervous system (CNS) tumor. Parents were asked to rate the extent to which they experienced a set of specific fears related to their child's brain tumor and its treatment. Outcomes for parents of CNS tumor patients (n = 82) were compared with those of reference parents of patients treated for acute lymphoblastic leukemia (n = 208). The fears about an illness recurrence and the late effects of treat- ment were most prominent among parents of CNS tumor patients. For 7 out of 11 kinds of fear, parents of CNS tumor patients expressed a stronger fear than the reference group. More than a quarter of the parents of children treated for CNS tumors feared a complete decline of the child. Parents of CNS tumor patients experience relatively heightened cancer related fears in several domains. The fear of devastating consequences felt by one fourth of parents signals the need of indi- vidualized psychological support and information at diagnosis and follow-up to facilitate parental coping with the posttreatment situation.

On Receiving the Diagnosis of Cancer: The Adolescent Perspective

Stegenga, K., Ward-Smith, P. — Tue, 07 Apr 2009 18:01:37 PDT

The adolescent life stage encompasses unique developmental challenges. Little is known about the experience of receiving a cancer diagnosis during this already demanding life stage. The aim of this study is to explore the lived experience of being diagnosed with cancer from the perspective of the adolescent. A phenomenological approach is used to perform semistructured interviews with 10 adolescents who have been diagnosed with cancer within the previous 4 to 6 months. Colaizzi's method of analysis is used to allow themes to emerge from these data. Six themes capture the essence of being diagnosed with cancer from the perspective of the adolescent: (1) the stunning loss of normalcy, (2) gaining information, (3) the importance of friends and their reactions, (4) getting used to it, (5) giving back, and (6) family support. The results of this study provide an emerging understanding of the unique perspective of the adolescent with cancer. Understanding this perspective is critical to meet the needs of this population.

Radiation Therapy Preparation by a Multidisciplinary Team for Childhood Cancer Patients Aged 31/2 to 6 Years

Filin, A., Treisman, S., Peles Bortz, A. — Tue, 07 Apr 2009 18:01:37 PDT

Approximately 50% to 60% of children with cancer require radiation therapy. Radiation is one modality of treatment for pediatric malignancies and is used as complementary, palliative, emergency, or sole treatment. The goal of this program was to provide the child and family with coping strategies and minimize the necessity for anesthesia during radiation treatment. Since the beginning of the project, 55 children have participated in the preparation program. The developers of the program have found it worthwhile for the program to be flexible and matched to each child's and family's specific needs and capabilities. It has been found that the radiation therapy preparation program minimizes anxiety and increases satisfaction with care among the child, family, and staff involved.

School Reentry for Children With Cancer: Perceptions of Nurses, School Personnel, and Parents

Moore, J. B., Kaffenberger, C., Goldberg, P., Kyeung Mi Oh, , Hudspeth, R. — Tue, 07 Apr 2009 18:01:37 PDT

The purpose of this interdisciplinary descriptive study was to examine the perceptions of nurses, school personnel, and parents about school reentry for children with cancer and to determine whether activities and services performed supported school reentry. The study also investigated parents' perception of the impact of cancer on their child's academic performance, cognitive ability, and school attendance. Results of the study showed that few activities and services were performed to facilitate children's school reentry by either nurses or school personnel. Parents reported no significant differences in their children's cognitive ability or academic performance. School attendance was significantly lower after diagnosis and therapy. Conclusions were that communication among nurses, school personnel, and parents was a major barrier to providing effective services to students and their parents. Nurses were unsure of how to help parents navigate the school bureaucracy, school personnel felt they needed more information, and parents felt that their children were not receiving all the school reentry services needed. Individuals in this study recommended that a liaison position be created to coordinate services.

Use of Continuous Intravenous Ketamine for End-Stage Cancer Pain in Children

Conway, M., White, N., Jean, C. St., Zempsky, W. T., Steven, K. — Tue, 07 Apr 2009 18:01:37 PDT

Children in the terminal stage of cancer may experience intractable pain despite the use of high doses of opioids. The resultant sedating effect of the opioids limits the child's ability to communicate and participate in activities, thereby negatively affecting quality of life. Ketamine, an intravenous (IV) anesthetic with analgesic properties, when used in low doses, may be useful in managing pediatric cancer pain at the end of life. Ketamine can prevent the development of opioid tolerance and provide additional analgesia without an increase in sedating effects. At the authors' institution, 2 children with end-stage cancer were started on continuous infusion low-dose ketamine to help achieve adequate pain control and allow the children to be home and interactive for the last weeks of their lives. Each case illustrates the complexities of achieving and maintaining adequate pain control and promoting care of the child and family in a setting that is most appropriate for them.

Ethical Considerations in Pediatric Oncology Phase I Clinical Trials According to The Belmont Report

Haylett, W. J. — Tue, 07 Apr 2009 18:01:37 PDT

Whether to suggest enrollment of pediatric oncology patients with advanced or refractory disease into a Phase I clinical trial may present a significant ethical dilemma for health care professionals. Phase I trials are experimental and unpredictable by nature, yet health care professionals must ensure the trial's therapeutic intent as well as address the many vulnerabilities of the child with terminal cancer. After reviewing the role and phases of clinical research in pediatric oncology, this article discusses ethical considerations in Phase I clinical trials according to The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects in Research and discusses specific applications of these key ethical principles.