Development of a Culturally Competent Service to Improve Academic Functioning for Latino Survivors of Acute Lymphoblastic Leukemia: Methodological Considerations.

Many survivors of childhood acute lymphoblastic leukemia (ALL) develop neurocognitive deficits that compromise academic functioning, especially in the presence of sociodemographic risk factors. The extent to which these risk factors coexist for Latino ALL survivors is not well described, but with shifts in U.S. demographics and improved survival in ALL, culturally competent interventions are needed. The Achieving Best Cognitive Successes after Cancer service was designed and implemented by a team representing nursing, medicine, psychology, and social work. Service components include neurocognitve assessment and individualized intervention for treatment-related risks and improving academic success for school-aged ALL survivors. Interventions are child-focused and parent-directed, recognizing that parents are major sources of support and advocates for their children within school systems. The service was designed to be culturally appropriate for the predominantly Latino patient population at our center, based on (1) linguistic competency of children and parents; (2) multicultural and ecological considerations for urban, low socioeconomic status, and migrant populations; (3) literacy barriers; and (4) contextual factors. This report describes methodological considerations and practice implications relevant to the design and implementation of similar culturally competent services for Latino pediatric cancer survivors.

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients.

There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children's Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.

Reconsidering Physical Activity Restrictions for Mononephric Survivors of Childhood Cancer: A Report From the Children's Oncology Group.

Although traditional recommendations for mononephric childhood cancer survivors are to avoid contact sports in order to protect the remaining kidney, review of available evidence suggests that the majority of renal loss is caused by accidents not involving sports. An interdisciplinary team performed a review of the English literature published from 1999 to 2012 within the PubMed, Cochrane, Google Scholar, and National Guidelines Clearinghouse databases. The level of evidence and proposed recommendations were graded according to an established rubric and GRADE criteria. Our review found that kidney loss is most commonly caused by nonsports activities such as motor vehicle accidents and falls, implying that restrictions on sports-related activity in mononephric pediatric survivors are not well supported. This favors encouraging ordinary sports and related activities without restriction in mononephric childhood cancer survivors because the known benefits of exercise outweigh the exceedingly low risk of renal loss. Accordingly, activity recommendations for mononephric patients have been revised in the most current version of the Children's Oncology Group Long-term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers. This has important implications for this and similar populations who may now undertake individual and organized sports without undue regard for their mononephric status.

Comparative Toxicity by Sex Among Children Treated for Acute Lymphoblastic Leukemia: A Report From the Children's Oncology Group.

BACKGROUND: Epidemiologic studies find sex-based differences in incidence, survival, and long-term outcomes for children with cancer. The purpose of this study was to determine whether male and female patients differ with regard to acute treatment-related toxicities. PROCEDURES: We reviewed data collected on the Children's cancer group (CCG) high-risk acute lymphoblastic leukemia (ALL-HR) study (CCG-1961), and compared male and female patients' toxicity incidence and related variables in the first four phases of treatment. Similar analyses were performed with standard-risk ALL (ALL-SR) patients enrolled in CCG-1991. RESULTS: Among ALL-HR patients, females had significantly more hospital days, delays in therapy, grade 3 or 4 toxicities (e.g., gastrointestinal, liver), and supportive care interventions (e.g., transfusions, intravenous antibiotics) than males. Females were significantly more likely to have died of treatment-related causes than males (Hazard ratio = 2.8, 95%CI = 1.5-5.3, P = 0.002). Five months after beginning the treatment, the cumulative incidence of treatment-related deaths was 2.6% for females and 1.2% for males. Similar disparities were found among ALL-SR patients, with females experiencing significantly more hospital days and treatment-related toxicities than males. CONCLUSIONS: This study complements cancer survivorship studies that also report an increase in treatment-related late effects among females. Risk profiles appear to be different for male and female patients, with females having greater risk of developing both acute and long-term treatment-related toxicities. The underlying biological mechanisms for these sex differences are poorly understood and warrant further study in order to determine how sex-based outcome disparities can be addressed in future clinical trials and practice.

Characterization of transfusion-derived iron deposition in childhood cancer survivors.

BACKGROUND: Childhood cancer survivors (CCS) receiving packed red blood cell (PRBC) transfusions may have increased risk for vital organ iron deposition causing serious late effects. METHODS: This cross-sectional cohort study of a CCS cohort quantified organ iron content by magnetic resonance imaging. Iron status by serum markers and hemochromatosis gene mutation status were assessed. RESULTS: Seventy-five patients who had received a range (0-392 mL/kg) of cumulative PRBC transfusion volumes were enrolled (median age 14 years, range 8-25.6 years at evaluation). Median follow-up time was 4.4 years, and median time since last transfusion was 4.9 years. Cancer diagnoses included acute lymphoblastic or myelogenous leukemia (ALL/AML; n = 33) and solid tumors (n = 42). Liver and pancreatic iron concentrations were elevated in 36 of 73 (49.3%) and 19 of 72 (26.4%) subjects, respectively. Cardiac iron concentration was not increased in this cohort. In multivariate analysis, cumulative PRBC volume (P < 0.0001) and older age at diagnosis (P < 0.0001) predicted elevated liver iron concentration. CONCLUSIONS: Iron overload (IO) may occur in children and adolescents/young adults treated for cancer and is associated with cumulative PRBC transfusion volume and age at diagnosis. IMPACT: These findings have implications for development of monitoring and management guidelines for cancer patients and survivors at risk for IO, exploration of the additive risk of liver/pancreatic damage from chemotherapeutic exposures, and health education to minimize further liver/pancreatic damage from exposures such as excessive alcohol intake and hepatotoxic medications.

Children's Oncology Group nursing research framework.

OBJECTIVES: To describe the development and application of an organizing research framework to guide Children's Oncology Group (COG) nursing research. DATA SOURCES: Research articles, reports and meeting minutes. CONCLUSION: An organizing research framework helps to outline research focus and articulate the scientific knowledge being produced by nurses in the pediatric cooperative group. IMPLICATIONS FOR NURSING PRACTICE: The use of a COG nursing research organizing framework can facilitate the clinical nurse's understanding of how children and families sustain or regain optimal health when faced with a pediatric cancer diagnosis through interventions designed to promote individual and family resilience.

Adolescents' psychosocial health-related quality of life within 6 months after cancer treatment completion.

BACKGROUND: Health-related quality of life (HRQOL) may be affected by cure-directed therapy given to pediatric oncology patients. Identification of HRQOL risk/protective factors may facilitate the development of clinical interventions. OBJECTIVE: The study purpose was to assess adolescents' psychosocial HRQOL soon after treatment completion using patient-reported outcome measures. METHODS: Subjects were recruited from May 2005 to February 2007 to participate in a structured interview that collected information on demographics, symptoms, HRQOL (PedsQL 4.0), and coping (Adolescent Coping Orientation for Problem Strategies Questionnaire). Disease/treatment information was abstracted from medical records. Data analysis included descriptive approaches for data summarization and regression modeling for estimation and testing. RESULTS: A total of 94 participants were included in the analyses. Their mean psychosocial functioning summary scores fell between the means reported for healthy children and children with cancer; 18% were more than 1 standard deviation below the mean. In the univariate analyses, lower psychosocial HRQOL was associated with central nervous system tumors (P = .01), radiation therapy (P = .01), and treatment duration of 13 to 24 months (P < .01). Protective factors identified in multivariable analyses included older age and use of humor for coping; risk factors included symptoms of pain, fatigue, and posttraumatic stress. CONCLUSION: Although most patients rated their psychosocial HRQOL as good, a subset (18%) may have increased risk for impaired HRQOL. IMPLICATIONS FOR PRACTICE: Clinical assessment of psychosocial HRQOL using patient-reported outcome measures during the early posttreatment phase is recommended. Longitudinal studies are needed to further explore risk/protective factors and to identify targeted interventions to minimize the adverse psychosocial effects of cancer treatment and maximize healthy survivorship.

Post-traumatic growth among an ethnically diverse sample of adolescent and young adult cancer survivors.

OBJECTIVE: Although some survivors of childhood cancer report significant psychosocial distress, many also report having derived benefits, or post-traumatic growth (PTG), from their cancer experience. This study examines PTG and its correlates among an ethnically diverse sample of adolescent/young adult (AYA) cancer survivors who have recently completed treatment. METHODS: Survivors of childhood cancer (n = 94; 47% Hispanic), ages 11-21 and within 6 months of completing cancer therapy, were recruited from three pediatric cancer centers. Participants completed a structured interview that assessed demographics, PTG, post-traumatic stress symptoms, health-related quality of life, optimism, and depressive symptoms. Diagnosis/treatment information was collected from each patient's medical record. Multiple regression analyses were used to identify significant correlates of PTG. RESULTS: The majority of survivors reported positive growth. PTG was positively associated with psychosocial functioning and post-traumatic stress symptoms and inversely associated with physical functioning and depressive symptoms. PTG was significantly lower among survivors of bone tumors (vs. survivors of other cancers) and Hispanic survivors who primarily spoke English at home (vs. Hispanics who primarily spoke Spanish at home and non-Hispanics). PTG was not significantly related to age, sex, optimism, cancer treatment modality, duration of treatment, or treatment intensity. CONCLUSIONS: The AYA survivors commonly reported PTG in the immediate aftermath of cancer treatment. Findings regarding PTG among more acculturated Hispanic and bone tumor AYA survivors may help to inform risk-adapted clinical interventions, among those transitioning from active treatment to post-treatment surveillance, to mitigate negative long-term sequelae and enhance positive psychosocial adaptation from the cancer diagnosis and treatment.

PROMIS pediatric measures in pediatric oncology: valid and clinically feasible indicators of patient-reported outcomes.

BACKGROUND: Establishing the ability of children and adolescents with cancer to complete the NIH-sponsored PROMIS pediatric measures electronically and the preliminary validity estimates of the measures (both full item banks and short forms) in pediatric oncology will contribute to our knowledge of the impact of cancer treatment on these young patients. PROCEDURES: A total of 203 8- to 17-year olds were administered eight PROMIS pediatric measures in a cross-sectional study design to establish known-group validity. Of the 200 who completed all or most of the items, a slight majority were male (55.5%) and white (54%). Patients were either undergoing treatment for cancer (n = 93) or in survivorship following treatment for cancer (n = 107). Measures were completed using computer interface during an in-person interaction with researchers. RESULTS: Only 3 of 203 participants did not complete the PROMIS pediatric measures. As hypothesized, participants in treatment were significantly different (worse) on parent-reported clinical indicators (blood counts, fatigue, and appetite) and on seven self-reported measures (depression, anxiety, peer relationships, pain interference, fatigue, upper extremity function, and mobility) from participants in survivorship. Females reported worse fatigue, anger, and pain interference than males. Worse patient-reported outcomes for patients in active treatment persisted after adjusting for potential confounding variables. CONCLUSIONS: Children and adolescents in treatment for cancer or in survivorship and ranging from 8 to 17 years of age can complete multiple PROMIS pediatric measures using a computer interface during an outpatient clinic visit or inpatient admission. Findings establish known-group validity for PROMIS pediatric measures in pediatric oncology.

Children's Oncology Group's 2013 blueprint for research: nursing discipline.

Integration of the nursing discipline within cooperative groups conducting pediatric oncology clinical trials provides unique opportunities to maximize nursing's contribution to clinical care, and to pursue research questions that extend beyond cure of disease to address important gaps in knowledge surrounding the illness experience. Key areas of importance to the advancement of the nursing discipline's scientific knowledge are understanding the effective delivery of patient/family education, and reducing illness-related distress, both of which are integral to facilitating parental/child coping with the diagnosis and treatment of childhood cancer, and to promoting resilience and well-being of pediatric oncology patients and their families.

Recommendations for the return of research results to study participants and guardians: a report from the Children's Oncology Group.

PURPOSE: The Children's Oncology Group (COG) strongly supports the widely recognized principle that research participants should be offered a summary of study results. The mechanism by which to do so in a cooperative research group setting has not been previously described. METHODS: On the basis of a review of the available empirical and theoretic literature and on iterative, multidisciplinary discussion, a COG Return of Results Task Force (RRTF) offered detailed recommendations for the return of results to research study participants. RESULTS: The RRTF established guidelines for the notification of research participants and/or their parents/guardians about the availability of research results, a mechanism for and timing of sharing results via registration on the COG public Web site, the scope of the research to be shared, the target audience, and a process for creating and vetting lay summaries of study results. The RRTF recognized the challenges in adequately conveying complex scientific results to audiences with varying levels of health literacy and recommended that particularly sensitive or complex results be returned using direct personal contact. The RRTF also recommended evaluation of the cost, effectiveness, and impact of sharing results. CONCLUSION: These recommendations provide a framework for the offering and returning of results to participants. They can be used by individual investigators, multi-investigator research collaboratives, and large cooperative groups.

Cancer survivor identity shared in a social media intervention.

This study investigates how cancer survivors construct their identities and the impact on their psychological health, as measured by depression and survivor self-efficacy. Fourteen young adult survivors of pediatric cancer participated in a customized social networking and video blog intervention program, the LIFECommunity, over a 6-month period. Survivors were asked to share their stories on various topics by posting video messages. Those video blog postings, along with survey data collected from participants, were analyzed to see how cancer survivors expressed their identities, and how these identities are associated with survivors' psychosocial outcomes. In survivors who held negative stereotypes about cancer survivors, there was a positive relationship with depression while positive stereotypes had a marginal association with cancer survivor efficacy. Findings indicate that although pediatric cancer survivors often do not publicly discuss a "cancer survivor identity," they do internalize both positive and negative stereotypes about cancer survivorship. It is important for practitioners to be aware of the long-term implications of cancer survivor identity and stereotypes.

Association of projected transfusional iron burden with treatment intensity in childhood cancer survivors.

BACKGROUND: Packed red blood cell (PRBC) transfusion is a mainstay in childhood cancer treatment, but has potential for inducing iron overload. The purpose of this study was to determine whether treatment intensity is predictive of projected iron burden resulting from PRBC transfusions among survivors of several forms of childhood cancer. PROCEDURE: This retrospective cohort study involved patients treated at Children's Hospital Los Angeles (CHLA) between June 1, 2004 and December 31, 2009. Clinical/demographic data were abstracted from medical records. Treatment Intensity Level was determined for each patient using a published scale. Adjusted cumulative PRBC transfusion volume for each patient (ml/kg) was used to compute the adjusted total iron burden (mg/kg) based upon the average hematocrit of the product. RESULTS: Median age of the cohort (n = 214) was 7.9 years (range 0.2-20.2). One hundred and fourteen (53.3%) were male and 129 (60.3%) were Hispanic/Latino. Diagnoses included acute leukemia and six solid tumors, management of which represents a range of cancer treatment intensities. The number of transfusions, transfusion volumes, and projected iron burden were significantly increased and exceeded upper limits of normal among patients with higher treatment intensity. Multivariate analysis found younger age and lower hemoglobin at diagnosis to be associated with greater iron burden after adjusting for treatment intensity. CONCLUSION: Greater treatment intensity is associated with need for more PRBC transfusions, and thus increased risk of iron overload among childhood cancer survivors. Iron overload may represent another clinically significant late effect following childhood cancer treatment.

Health care reform 2010: expected favorable impact on childhood cancer patients and survivors.

Despite generations of health care advocacy on behalf of children with chronic diseases, these special patients have faced barriers to care within the health care system. Among other challenges, children with cancer and adults who have survived childhood cancer have encountered soaring health care costs and gaps in coverage. This article reviews the key areas of 2010 federal health care reform, the Patient Protection and Affordable Care Act, pertaining to the care of children and adolescents with cancer and childhood cancer long-term survivors.

The legacy of pediatric oncology nursing in advancing survivorship research and clinical care.

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.

Creating a novel structure for nursing research in a cooperative clinical trials group: the Children's Oncology Group experience.

OBJECTIVE: To describe a novel structure designed to integrate nursing research into the Children's Oncology Group (COG). DATA SOURCES: Review articles, reports, and newsleters. CONCLUSION: A new structure using nurse researcher-advanced practice nurse dyads has succesfully integrated nurse researchers into COG scientific activity, as evidenced by the development of concept proposals, companion protocols, nursing objectives in therapeutic trials, and nurse-led publications. IMPLICATIONS FOR NURSING PRACTICE: This provides a promising method for integrating nurse researchers and increasing multidisciplinary research collaboration in cooperative oncology group.

Development of risk-based guidelines for pediatric cancer survivors: the Children's Oncology Group Long-Term Follow-Up Guidelines from the Children's Oncology Group Late Effects Committee and Nursing Discipline.

The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers are risk-based, exposure-related clinical practice guidelines intended to promote earlier detection of and intervention for complications that may potentially arise as a result of treatment for pediatric malignancies. Developed through the collaborative efforts of the Children's Oncology Group Late Effects Committee, Nursing Discipline, and Patient Advocacy Committee, these guidelines represent a statement of consensus from a multidisciplinary panel of experts in the late effects of pediatric cancer treatment. The guidelines are both evidence-based (utilizing established associations between therapeutic exposures and late effects to identify high-risk categories) and grounded in the collective clinical experience of experts (matching the magnitude of risk with the intensity of screening recommendations). They are intended for use beginning 2 or more years following the completion of cancer therapy; however, they are not intended to provide guidance for follow-up of the survivor's primary disease. A complementary set of patient education materials ("Health Links") was developed to enhance follow-up care and broaden the application of the guidelines. The information provided in these guidelines is important for health care providers in the fields of pediatrics, oncology, internal medicine, family practice, and gynecology, as well as subspecialists in many fields. Implementation of these guidelines is intended to increase awareness of potential late effects and to standardize and enhance follow-up care provided to survivors of pediatric cancer throughout the lifespan. The Guidelines, and related Health Links, can be downloaded in their entirety at www.survivorshipguidelines.org.