Kathleen S. Ruccione

Research triangulation to derive meaning‐based quality‐of‐life theory: Adolescent Resilience Model and instrument development

We describe the triangulation of qualitative and quantitative research methods used to develop and test the Adolescent Resilience Model (ARM). The differences in meaning‐based and function‐based health‐related quality of life (HRQL) are discussed, and method triangulation is presented as a means of developing models of HRQL that represent the perspectives of the adolescent and family. Qualitative methods of phenomenology, simultaneous concept analysis, focus groups and thematic analysis were used to generate the ARM. Quantitative instrumentation and structural equation model development and testing were used to evaluate the ARM. A decision‐making process for combining qualitative and quantitative research, so that both approaches are equally valued and used, is also presented. Int. J. Cancer Suppl. 12:125–131, 1999. ©1999 Wiley‐Liss, Inc.

PROMIS Pediatric Measures in Pediatric Oncology: Valid and Clinically Feasible Indicators of Patient-Reported Outcomes

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.

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

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.

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

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.

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 nursings 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 disciplines 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. Pediatr Blood Cancer 2013; 60: 1031–1036.

Survivors of childhood and adolescent cancer: A multidisciplinary approach: Third Edition

Because of the tremendous advances in childhood and adolescent cancer treatment, medical and psychosocial survivorship issues have gained more attention in the last decade. Health professionals are now more likely to encounter cancer survivors in their clinical practice and will be presented with the challenge of sifting through the emerging scientific knowledge and evidence-based practices. This volume, now in its second edition, aids in simplifying this task by providing an overview of the health issues in survivorship, and successfully integrates relevant information on the study of the delayed consequences, or Blate effects[, of cancer treatment. According to the 2003 reportChildhoodCancer Survivorship: Improving Care and Quality of Life (Institute of Medicine, National Research Council of the National Academies), approximately two thirds of childhood cancer survivors are likely to experience at least one late effect resulting from the disease process, treatment, or both. Most important for mental health workers, neurocognitive and psychological symptoms are among the most common of such late effects. These can have an impact on quality of life in a variety of settings, including academic achievement, work performance, and interpersonal relationships. When conducting a comprehensive mental health evaluation and treatment plan for these survivors, providers must carefully consider the potential physical and emotional impact of their childhood cancer experience. The editors have divided the volume into 22 chapters that provide an in-depth overview of late effects by organ system. They also address legal concerns, methodological problems in the study of childhood cancer survivors, and special issues related to the transition from adolescence to adulthood. Throughout the text, readers will find a highly organized chapter format, clinically useful tables, and impressive figures. Although the majority of this text focuses on medical late effects, the chapters relevant to psychiatry are well constructed. In Chapter 4, BCentral Nervous System Effects[, Nina Kadan-Lottick and Joseph Neglia address a wide range of central nervous system late effects, including paralysis, neuropathies, blindness, seizures, behavioral disturbances, diminished intellectual function, learning difficulties, school failure, and limited employability. This chapter carefully reviews the neurotoxic effects of radiation and chemotherapy, as well as the unique risks associated with central nervous system tumors. The authors discuss the variable impact of toxic andmetabolic insults depending on an individual_s stage of brain development. There is also emphasis on neural plasticity and capacity for recovery following brain insult. One of the most useful aspects of this section is a table addressing the domains of neurobehavioral function and screening questions to detect potential abnormalities. In Chapter 19, BPsychological Aspects of Long-term Survivorship[, Mary Rourke and Anne Kazak are careful to note that most survivors of childhood and adolescent cancer do not develop traditional psychological issues later in life. They also stress that many individuals will express the positive outcomes of the childhood cancer experience (e.g., stronger family relationships, greater sense of hope). The authors broadly define Bpsychological late effects[ as Bthe influence of cancer, treatment, and survivorship on survivors_ and their family members_ feelings, thoughts, behaviors and relationships[ (p. 295). The authors effectively present the research involving posttraumatic stress symptoms in survivors and their family members. This section is especially rich, and highlights the various developmental differences in survivors. For example, the child and adolescent survivors tend to experience traumatic reactions related to concrete events such as painful procedures, whereas young adult survivors may experience additional distress such as worry over late effects or infertility concerns. The emphasis on the family is also one of the strong points of the chapter. The authors note that Bnearly all families (99%) have at least one member who struggles with reexperiencing symptoms[ (p. 297). Here we are reminded that in treating this population it is important to also address the psychological needs of family members. In conclusion, this text is clear, concise, and full of useful information to better understand the unique needs of child and adolescent cancer survivors. Perhaps a child and adolescent psychiatrist who wishes to become more versed in this B O O K R E V I E W S Assistant Editor: Andres Martin, M.D., M.P.H.

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.

Recommendations for the Return of Research Results to Study Participants and Guardians: A Report From the Children's Oncology Group

PURPOSE The Childrens 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.

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.

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.