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Background: Gonadal damage is a consequence of therapy for pediatric malignancies. Prepubertal males have no semen or mature spermatozoa, posing a challenge for fertility preservation. Testicular tissue cryopreservation is a potential option but is still experimental. We report on a pilot protocol that offered testicular biopsy cryopreservation to families of prepubertal boys with newly diagnosed malignancy. The aims were to determine the acceptability and safety of this procedure.Methods: Parents of prepubertal boys with diagnoses at highest risk for treatment-related gonadal damage were offered the option of testicular cryopreservation. Half of the biopsy was frozen for the subject's potential future use and the remainder used for research. Data on negative intraoperative and/or 7 day post-operative sequelae of testicular biopsies were assessed. Two to four weeks later, parents were asked to complete a questionnaire on factors influencing their decision to have the biopsy or not.Results: Since January 2008, 24 boys have met the eligibility criteria but three required immediate treatment and were excluded. Sixteen of 21 families (76%) consented to testicular biopsy, indicating the prospective acceptability of this option to parents of boys aged 3 months to 14 years; 14 underwent the procedure without any negative intra- or post-operative sequelae. Although the time at diagnosis is stressful, families can give thoughtful consideration to this option. Factors such as religion, finance, ethics and the experimental nature of cryopreservation did not play a major role in decision-making.Conclusions: Parents of prepubertal boys with cancer are willing to pursue testicular tissue cryopreservation at diagnosis, and testicular biopsy caused no acute adverse effects. [ABSTRACT FROM AUTHOR]

Context: Adult survivors of childhood cancer are at risk for medical and psychosocial sequelae that may adversely affect their health status.Objectives: To compare the health status of adult survivors of childhood cancer and siblings and to identify factors associated with adverse outcomes.Design, Setting, and Participants: Health status was assessed in 9535 adult participants of the Childhood Cancer Survivor Study, a cohort of long-term survivors of childhood cancer who were diagnosed between 1970 and 1986. A randomly selected cohort of the survivors' siblings (n = 2916) served as a comparison group.Main Outcome Measures: Six health status domains were assessed: general health, mental health, functional status, activity limitations, cancer-related pain, and cancer-related anxiety/fears. The first 4 domains were assessed in the control group.Results: Survivors were significantly more likely to report adverse general health (odds ratio [OR], 2.5; 95% confidence interval [CI], 2.1-3.0; P<.001), mental health (OR, 1.8; 95% CI, 1.6-2.1; P<.001), activity limitations (OR, 2.7; 95% CI, 2.3-3.3; P<.001), and functional impairment (OR, 5.2; 95% CI, 4.1-6.6; P<.001), compared with siblings. Forty-four percent of survivors reported at least 1 adversely affected health status domain. Sociodemographic factors associated with reporting at least 1 adverse health status domain included being female (OR, 1.4; 95% CI, 1.3-1.6; P<.001), lower level of educational attainment (OR, 2.0; 95% CI, 1.8-2.2; P<.001), and annual income less than 20 000 dollars (OR, 1.8; 95% CI, 1.6-2.1; P<.001). Relative to those survivors with childhood leukemia, an increased risk was observed for at least 1 adverse health status domain among those with bone tumors (OR, 2.1; 95% CI, 1.8-2.5; P<.001), central nervous system tumors (OR, 1.7; 95% CI, 1.5-2.0; P<.001), and sarcomas (OR, 1.2; 95% CI, 1.1-1.5; P =.01).Conclusion: Clinicians caring for adult survivors of childhood cancer should be aware of the substantial risk for adverse health status, especially among females, those with low educational attainment, and those with low household incomes. [ABSTRACT FROM AUTHOR]

Working as specialists in a changing environment, advanced practice nurses in pediatric oncology (APN-POs) benefit from specific pediatric oncology education. The graduates of a pediatric nurse practitioner program in pediatric oncology completed a survey about their educational experience and its impact on their current practice. This practitioner program included a subspecialty education in pediatric oncology and an early form of distance learning. The respondents' answers parallel a number of emerging themes in APN-PO practice and education. Employing distance learning methods in providing subspecialty education holds important implications for future APN-PO education and practice and for the health care of communities throughout the country. Copyright © 2001 by W.B. Saunders Company [ABSTRACT FROM AUTHOR]

Late effects of multi-modality treatments may result in organ compromise or new primary cancers for a growing population of long-term survivors of cancer. It is estimated that there will be 180,000-220,000 childhood cancer survivors living in the United States in the year 2000. This number of survivors warrants program planning specific to their needs. Add to this the number of patients diagnosed with cancer as adults who have reached 5-year survival status, and the total population of long-term survivors of cancer justifies special programs to deal with the issues of survivorship. This paper addresses several questions: (a) What are the needs of cancer survivors? (b) Can these needs be met through specialty survivor clinics? (c) What are the benefits of survivor follow-up clinics? (d) Should survivor clinics for children and adults become standard care? The clinic structure and objectives, and daily procedures for a follow-up clinic in New York State are presented as one model of care. Benefits for a free-standing clinic also are discussed as well as financial considerations and directions for research. [ABSTRACT FROM AUTHOR]

BACKGROUND: The success in developing curative therapy for pediatric malignancies permits evaluation of cancer-related sequelae and their effect on the health status of long-term survivors. Numerous studies have demonstrated that cancer and its treatment predispose to a variety of medical and psychosocial sequelae that may adversely affect health status. OBJECTIVE: We evaluated clinical and treatment factors predisposing to poor health outcomes of adults participating in the Childhood Cancer Survivor Study (CCSS). METHODS: Health status was assessed in 9535 adult participants of the CCSS. The CCSS is a retrospective cohort study of individuals diagnosed with childhood cancer between 1970 and 1986, under age 21, and surviving ≥5 y. A randomly selected cohort of the survivors' siblings (N = 2916) served as a comparison group. Six health status domains were assessed: general health, mental health, functional status, activity limitations, cancer-related pain, and cancer-related anxiety and fears. The first 4 domains were assessed in the control group. Multivariate analyses were used to determine the odds ratio (OR) and 95% confidence intervals (CI) associated with health outcomes reported by self-administered questionnaire. RESULTS: The mean age at interview for survivors was 26.8 y (range 18-48). The mean age at cancer diagnosis was 10.0 y (range 0.1-21.0), with a mean interval from diagnosis to completion of questionnaire of 17.4 y (range 6-29). The cohort included 53% male and 87.4% white, non-Hispanic survivors. Primary cancer diagnoses comprised leukemia, Hodgkin's disease, central nervous system tumor, bone tumor, soft tissue sarcoma, non-Hodgkin's lymphoma, Wilms' tumor, and neuroblastoma. Survivors were significantly more likely to report adverse general (OR = 2.5; 95% CI, 2.1-3.0) and mental health (OR = 1.8; 95% CI, 1.6-2.1), activity limitations (OR = 2.7; 95% CI, 2.3-3.3), and functional impairment (OR = 5.2; 95% CI, 4.1-6.6) compared with siblings. Although only 10.9% of survivors reported fair or poor general health, 44% reported at least one adversely affected health status domain. Sociodemographic factors associated with reporting at least one adverse health status domain included: female gender (OR = 1.4; 95% CI, 1.3-1.6), lower level of educational attainment (OR 2.0; 95% CI, 1.8-2.2), and annual income <$20,000 (OR = 1.8; 95% CI, 1.6-2.1). Relative to those with childhood leukemia, risk for at least one adverse health status domain was elevated among those with bone tumors (OR = 2.1; 95% CI, 1.8-2.5), central nervous system tumors (OR = 1.7; 95% CI, 1.5-2.0), and sarcomas (OR = 1.2; 95% CI, 1.1-1.5). CONCLUSION: Clinicians caring for adult survivors of childhood cancer should be aware of the substantial risk for adverse health status, especially among females, those with low educational attainment, and those with low household incomes. Primary care providers should anticipate health problems in these clinical and sociodemographic groups when evaluating adults with a history of childhood cancer and be prepared to address physical and psychosocial sequelae adversely affecting health status. [ABSTRACT FROM AUTHOR]

Background: Only a few small studies have assessed the long-term morbidity that follows the treatment of childhood cancer. We determined the incidence and severity of chronic health conditions in adult survivors.Methods: The Childhood Cancer Survivor Study is a retrospective cohort study that tracks the health status of adults who received a diagnosis of childhood cancer between 1970 and 1986 and compares the results with those of siblings. We calculated the frequencies of chronic conditions in 10,397 survivors and 3034 siblings. A severity score (grades 1 through 4, ranging from mild to life-threatening or disabling) was assigned to each condition. Cox proportional-hazards models were used to estimate hazard ratios, reported as relative risks and 95% confidence intervals (CIs), for a chronic condition.Results: Survivors and siblings had mean ages of 26.6 years (range, 18.0 to 48.0) and 29.2 years (range, 18.0 to 56.0), respectively, at the time of the study. Among 10,397 survivors, 62.3% had at least one chronic condition; 27.5% had a severe or life-threatening condition (grade 3 or 4). The adjusted relative risk of a chronic condition in a survivor, as compared with siblings, was 3.3 (95% CI, 3.0 to 3.5); for a severe or life-threatening condition, the risk was 8.2 (95% CI, 6.9 to 9.7). Among survivors, the cumulative incidence of a chronic health condition reached 73.4% (95% CI, 69.0 to 77.9) 30 years after the cancer diagnosis, with a cumulative incidence of 42.4% (95% CI, 33.7 to 51.2) for severe, disabling, or life-threatening conditions or death due to a chronic condition.Conclusions: Survivors of childhood cancer have a high rate of illness owing to chronic health conditions. [ABSTRACT FROM AUTHOR]

Advanced practice providers (APPs), widely considered essential to the delivery of healthcare, are one of the fastest-growing workforces in the United States. However, the APP role is evolving, and professional growth and advancement programs for APPs are still emerging at many institutions. Professional mentorship has been long embraced by other healthcare disciplines and numerous organizations because of the benefits gained from helping employees increase knowledge, enhance skills, and achieve scholarly goals, such as retention. Thus, there is a dearth of evidence on building effective APP mentorship models. This article details the development of an APP mentorship model and program designed to support both the mentor and mentee across the career trajectory., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Objective: The objective of this study was to describe the burden of adverse kidney and hypertension outcomes in patients evaluated by pediatric nephrology in a multidisciplinary survivorship clinic., Study Design: Retrospective chart review of all patients followed up by nephrology in our multidisciplinary survivorship clinic from August 2013 to June 2021. Data included clinic blood pressure, longitudinal ambulatory blood pressure monitoring (ABPM), echocardiography, serum creatinine, and first-morning urine protein/creatinine ratios. For patients with multiple ABPMs, results of initial and most recent ABPMs were compared., Results: Of 422 patients followed in the multidisciplinary cancer survivorship clinic, 130 were seen by nephrology. The median time after therapy completion to first nephrology visit was 8 years. The most common diagnoses were leukemia/myelodysplastic syndrome (27%), neuroblastoma (24%), and Wilms tumor (15%). At the last follow-up, 68% had impaired kidney function, 38% had a clinical diagnosis of hypertension, and 12% had proteinuria. There were 91 ABPMs performed in 55 (42%) patients. Patients with multiple ABPMs (n = 21) had statistically significant reductions in overall median blood pressure loads: systolic initial load 37% vs most recent 10% (P = .005) and diastolic load 36% vs 14% (P = .017). Patients with impaired kidney function were more likely to have received ifosfamide. Patients with hypertension were more likely to have received total body irradiation or allogeneic stem cell transplant., Conclusions: History of leukemia/myelodysplastic syndrome, neuroblastoma, and Wilms tumor was frequent among survivors seen by nephrology. There was significant improvement in cardiovascular measures with increased recognition of hypertension and subsequent treatment., (Copyright © 2022 Elsevier Inc. All rights reserved.)

The creation of professional advancement programs is an important goal to support development of nurses and other team members. Maintaining consistency among programs within one institution poses a challenge. The development of an overarching framework has provided this structure. Our framework is composed of core components, key elements, and best practices that can be applied to ensure consistency among all programs. This framework can be applied to existing programs or guide new eight programs., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Objective: Fewer than one-third of childhood cancer survivors receive follow-up from an adult provider, and adolescent and young adults (AYAs) from structurally minoritized sociodemographic groups often face health disparities that can impact transition to adult-oriented care. The primary aim of this study was to determine the relation among sociodemographic factors, cumulative effects, and transition beliefs/expectations and goals, and the moderating role of health competence beliefs in AYA survivors of childhood cancer., Methods: A total of 195 AYAs (aged 15-29) reported sociodemographic information, completed the Transition Readiness Inventory assessing positive beliefs/expectations and goals related to transition, and completed the Health Competence Beliefs Inventory assessing health perceptions, healthcare satisfaction, cognitive competence, and autonomy. A cumulative sociodemographic factor variable was computed to investigate the potential additive effects of multiple sociodemographic factors associated with disparities. T-tests, Pearson correlations, and multivariate linear regressions were used., Results: Cumulative sociodemographic factors were not related to transition readiness, and insurance type was the only factor associated with health competence beliefs and transition readiness, such that AYAs with public insurance reported lower healthcare satisfaction, cognitive competence, and transition goals relative to those with private insurance. There were no interaction effects; however, health competence beliefs were significantly associated with transition beliefs/expectations and goals., Conclusion: Public insurance is a barrier to holding positive beliefs/expectations and goals about transition, yet other sociodemographic factors associated with risks for poor transfer were not related to transition readiness. Multi-level interventions to reduce disparities and improve transition readiness should target health competence beliefs and barriers created by insurance., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Family management (FM) challenges of maternal caregivers of young adult survivors of childhood brain tumors are well documented, but there are no evidence-based caregiver interventions to improve FM., Objectives: The aims of this study were to (1) generate the knowledge necessary for developing a caregiver intervention (stage 0) and (2) modify an existing, efficacious intervention by engaging stakeholders (stage 1)., Methods: Stages 0 and 1 of the National Institutes of Health Stage Model for Behavioral Intervention Development and the FM Styles Framework were used in this study., Results: In stage 0, families with condition-focused FM patterns were identified as at risk for poor problem solving. The 12-item Condition Management Ability scale of the FM Measures was selected as the screener to identify condition-focused maternal caregivers. Problem solving was identified as a potential mechanism for promoting behavior change. In stage 1, Bright IDEAS for Everyday Living was modified by integrating the FM Styles Framework creating Training in Problem Solving for Caregivers of Young Adult Survivors of Childhood Brain Tumors. Qualitative and quantitative assessments of feasibility and acceptability by maternal caregivers were excellent and used to improve selected areas of concern., Conclusion: Feedback from stakeholders indicates that Training in Problem Solving is a promising approach to shifting FM patterns and improving the functioning of caregivers, young adult survivors, and families., Implications for Nursing Practice: When developing interventions, the use of systemic methods can provide both clinically based and scientifically acceptable solutions. Those interventions based on both problem solving and FM are potentially promising but need further testing., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

As the number of Advanced Practice Providers (APPs) has increased across health care settings, institutions have identified the need to provide opportunities for the advancement, growth, and development of APPs. An APP Professional Advancement Program was developed and implemented at our freestanding, pediatric academic medical center that employs over 700 APPs. This program was designed to support all APPs regardless of their role and practice setting by recognizing their accomplishments and providing the tools and resources needed to pursue opportunities to further their professional development and leadership. This article describes the development, implementation, and sustainment of an APP Professional Advancement Program., (Copyright © 2021 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.)

Objectives: To provide a summary of the emerging and ongoing survivorship challenges facing childhood, adolescent, and young adult cancer survivors and their families., Data Sources: Research and review articles, websites, and clinical guidelines specific to childhood cancer survivorship were used., Conclusion: Many challenges exist in assuring quality long-term follow-up and risk-based screening for childhood cancer survivors. Although many childhood cancer survivors survive well into adulthood, they are at risk for a vast number of later complications of their cancer treatment necessitating annual cancer surveillance. In addition, many childhood cancer survivors are not engaging in long-term follow-up recommendations for clinic attendance, risk-based surveillance, and screening for potentially life-ending events. Pediatric oncology nurses and advanced practice nurses have played an enormous role in the design of childhood cancer survivorship programs and are an integral member of the multidisciplinary health care team who care for this population. Nurses have an obligation to continue to advance the survivorship care of childhood cancer survivors and lead interventional opportunities to improve the lifelong health-related quality of life and overall physical health., Implications for Nursing Practice: Pediatric oncology nurses and advanced practice registered nurses must have a working knowledge of the many late effects that childhood cancer treatment has on the long-term health of childhood cancer survivors. Nurses are well-placed in positions to continue the efforts begun more than 2 decades prior by pediatric oncology nurses who saw the value and necessity of designated survivorship programs., Competing Interests: Declaration of Competing Interest None., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Background: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA., Procedure: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA., Results: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app., Conclusions: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management., (© 2021 Wiley Periodicals LLC.)

Purpose: To examine associations between fathers' and mothers' appraisals of family management and physical and emotional health-related quality of life (QOL) for young adult survivors of childhood brain tumors., Design: Cross-sectional., Sample: 47 mothers and 39 fathers (39-67 years old); 47 survivors (18-33 years old)., Methods: Analyses evaluated relationships among family management (Survivor's Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty, View of Condition Impact, Parental Mutuality), quality of life, and parental role., Findings: Except for Parental Mutuality, family management ratings were not significantly different for mothers and fathers, and parental views of survivors' physical and emotional QOL improved with better family management. Parental role moderated associations between physical and emotional QOL and Survivors' Daily Life and between emotional QOL and Condition Management Ability, Condition Management Effort, and View of Condition Impact., Implications for Psychosocial Providers: Assess and address survivor QOL through family management from multiple perspectives.

Due to the complexity of cancer late effects, the education required to provide anticipatory guidance and support to the caregivers of adolescent and young adult (AYA) survivors of childhood brain tumors can be difficult. Therefore, identifying challenges to family management (FM) could be helpful in anticipating complications with the integration of tumor and treatment late effects into family life. Building on previous research that described FM for children with chronic conditions, children who survived cancer, and the Family Management Styles Framework, the purpose of this study was to identify FM challenges for caregivers of AYA survivors of childhood brain tumors to guide clinical practice and research. Directed content analysis was used to identify FM challenges in data from semistructured interviews with 45 maternal caregivers for AYA survivors of childhood brain tumors living with them. Caregivers were largely White (89%) with an average age of 52 years, educated beyond the high school level (67%), and were partnered or married (53%). On average, caregivers had been caring for the AYA for 21 years since diagnosis, and 56% of their survivors had moderate functional restrictions. A primary and a secondary analyst were assigned to the data for each interview and completed a single summary matrix. A list of challenges was created by the research team based on Family Management Styles Framework, the literature, and clinical expertise. Seven core challenges to FM were identified: ensuring survivor well-being, supporting survivor independence, encouraging sibling well-being, planning family activities, sustaining parents as caregivers, attending to survivor late effects, and providing support and advocacy.

Purpose: Survivors of pediatric brain tumors often have neurodevelopmental late effects, such as inattention. Symptoms may mirror those of attention-deficit/hyperactivity disorder (ADHD), which affects ~ 5-8% of the general population. This retrospective study of survivors followed at a large tertiary care center examined the prevalence of a clinical diagnosis of ADHD, and risk factors associated with ADHD diagnosis and ADHD-related medication use., Methods: A retrospective chart review of brain tumor survivors (n = 528), diagnosed between 2000 and 2015, who were at least 6 years old and 2 years from the end of tumor-directed therapy or from diagnosis, if no interventions were received. Clinical and demographic data were extracted from the medical record., Results: Survivors were 55.7% male with mean age 8.15 ± 4.4 (0.0-16.0) years at brain tumor diagnosis. The most common diagnoses were low-grade glioma, medulloblastoma, and craniopharyngioma, with 52.5% of tumors supratentorial. Of the survivors, 81.3% received surgery, 40.0% radiation therapy, and 36.6% chemotherapy. Sixty-nine survivors (13.1%) had ADHD diagnoses, 105 (19.9%) had symptoms of ADHD without diagnoses, and 64 (12.1%) had ADHD medication use. ADHD diagnosis was associated with younger age at tumor diagnosis (p = 0.05) and supratentorial tumor location (p = 0.001). ADHD diagnosis was not associated with gender, tumor type, or treatment type., Conclusions: Survivors of brain tumors are at increased risk of ADHD and related symptoms. The greatest increase in risk occurs for survivors with diagnoses at younger ages and supratentorial tumors. Additional research is warranted, as select survivors may benefit from behavioral or pharmacologic ADHD treatments to optimize functioning.

Background: This article presents an overview of pediatric relapsed and refractory acute lymphoblastic leukemia (ALL) and chimeric antigen receptor (CAR) T-cell therapy in pediatric patients., Objectives: Acute and chronic post-CAR T-cell effects and considerations are discussed, along with survivorship considerations., Methods: A case study illustrates the identification and management of physiologic and psychosocial sequelae., Findings: B-cell aplasia, hypogammaglobulinemia, infections, and cumulative effects of CAR T-cell therapy and other treatments are a concern in the pediatric population. Unique to pediatric and young adult survivors of childbearing potential are implications for post-treatment fertility. Financial toxicities and psychosocial needs require a family-centered approach to interventions that address the impact of CAR T-cell therapy not only on the patient, but also on caregivers and siblings.

This study aimed to assess college providers' basic knowledge of the health risks of young adult cancer survivors (YAS) and related care guidelines and to determine whether an educational in-service is an effective platform for increasing college health providers' knowledge about survivorship care at a large university health center. During phase 1, staff from college health centers and office of disabilities in the Philadelphia area (n = 40 staff members from 24 colleges/universities) completed a needs assessment on their experiences with YAS and preferences for education and care coordination. During phase 2, a 1-h educational in-service, informed by results of the survey, was provided to 18 health center medical providers. While most providers indicated that YAS are at risk for chronic health conditions because of cancer treatment, nearly all were unfamiliar with the content of published long-term follow-up guidelines for cancer survivorship. Over half did not have knowledge of cancer survivorship services in their area. All respondents were interested in more education on cancer survivorship care. Attendees of the in-service increased their knowledge of survivorship follow-up guidelines, awareness of local survivorship resources, and comfort with caring for YAS at posttest relative to baseline. The in-service was highly acceptable to providers and feasible to implement. College providers had little baseline knowledge of cancer survivorship guidelines, but were motivated to obtain more information. Through an educational in-service, college health providers may be better equipped to provide acute and longitudinal survivorship care to a vulnerable population who are at risk for inadequate engagement in risk-based follow-up care.

Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record, ((c) 2018 APA, all rights reserved).)

Measures of treatment intensity for childhood cancer are needed in research in order to control for variability in treatments. Existing measures of treatment intensity for childhood cancers do not reflect the complexities of treatment protocols for central nervous system (CNS) tumors. This paper describes the development of the Pediatric Neuro-Oncology Rating of Treatment Intensity (PNORTI). PNORTI development occurred in three phases. Phase 1: five experts in pediatric neuro-oncology created a 5-point scale of treatment intensity and 42 pediatric neuro-oncology providers completed a three-part online questionnaire to evaluate the classification system and apply the rating system to 16 sample patients. Validity was determined by respondents classifying therapy modalities into intensity levels. Inter-rater reliability was calculated from ratings of the 16 sample patients. Phase 2: three experts revised the PNORTI based on survey results and 18 pediatric neuro-oncology providers evaluated the classification system. Phase 3: ten experts in pediatric neuro-oncology refined and finalized the PNORTI and rated 10 sample patients using the PNORTI. Agreement between median ratings of the survey respondents and criterion raters for chemotherapy intensity (r's = .82 and 1.0) and overall treatment intensity level (r's = .91 and .94) were high in Phases 1 and 2. Inter-rater reliability also was very high when using the PNORTI to classify the 16 sample patients in Phase 1 (median agreement of r = .93 and rICC = .99) and the 10 sample patients in Phase 3 (median agreement of r = .92 and rICC = .98). The PNORTI is a valid and reliable method for classifying the intensity of different treatment modalities used in pediatric neuro-oncology.

Background: This study underscores the importance of the survivor/parent dynamic in understanding the knowledge level of childhood cancer survivors and their parents with regard to cancer diagnosis, treatments, and potential late effects, and to assess the impact of parental knowledge on survivor's knowledge., Procedure: A convenience sample (N = 219 dyads) consisting of childhood cancer survivors with a parent match was used. Survivors 2 years out from completion of therapy, aged 16 to 25 years, and fluent in English or Spanish completed 2 questionnaires to assess adolescent and young adult and parental knowledge regarding diagnosis, treatment, and long-term risks., Results: Data from the survivor/parent dyad confirm that parents are more knowledgeable than their child regarding treatment specifics. However, survivors are more accurate when assessing second tumor and fertility risk. More knowledgeable parents led to more knowledgeable survivors., Conclusions: Although parents were well-informed about treatment specifics, they were not as accurate in identifying risks appropriately. Therefore, education must be directed at both parent and survivors to maximize knowledge.

Purpose: Gonadal damage is a common consequence of treatment for pediatric malignancies. Nononcologic conditions may also utilize treatments with potential impact on fertility. Models for oncology fertility preservation programs have emerged and demonstrate that a multidisciplinary team approach can have a positive impact on referral patterns, appropriate risk counseling, and access to fertility preservation options. Expansion of programmatic breadth is needed, providing improved care to nonmalignant conditions where the disease itself may impact reproductive health or treatment modalities., Methods: With support from the Department of Pediatrics Chair's Initiative, a multidisciplinary, hospital-wide Fertility Preservation Service was created at the Children's Hospital of Philadelphia. A centralized team provides fertility consults across the institution, allowing for risk-based counseling and facilitation of fertility preservation options (both standard care and experimental)., Results: Team structure, consult process, and available fertility options for prepubertal and pubertal males and females are described. Preinitiative and postinitiative referral patterns were analyzed. Postinitiative referrals from divisions outside oncology more than doubled (34% vs. 15% at baseline)., Conclusions: A comprehensive model for fertility counseling provides accessible, high-value fertility preservation care to pediatric and young adult patients with a wide variety of diagnoses. A centralized point of contact ensures timely referrals and risk-based counseling and streamlines access to fertility preservation procedures., (Copyright © 2017 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: Young adult survivors (YAS) of childhood cancer require annual adult-focused, cancer-related follow-up given their risk for late effects of treatment. This study describes perception of and engagement with adult-focused, cancer-related follow-up care and general health care among YAS formally transferred to adult care from pediatric survivorship care., Methods: YAS transferred from pediatric survivorship care in the prior 1-5 years completed measures indicating engagement with cancer-related follow-up care, other health care utilization, content of communication by providers, quality of cancer-related care, and satisfaction with health care in the prior year., Results: Eighty YAS (M age = 27.7 years, M time since diagnosis = 10.4 years) participated. Just over half of YAS surveyed (n = 44, 55%) endorsed continuing cancer-related follow-up care since transfer. Those with cancer-related follow-up endorsed seeing subspecialty survivorship providers (n = 16, 44%) and primary care providers (n = 22, 50%) or utilizing a shared care model (n = 6, 14%). About a third of YAS endorsed seeing subspecialists (n = 29, 36%) or using other support services (n = 22, 27%). YAS-perceived content of communication varied significantly depending on care model with less cancer-related content being discussed by primary care providers, though perceived quality of cancer-related care and satisfaction with health care was generally favorable., Conclusions: YAS report less than optimal engagement in cancer-related follow-up care and communication in their health care encounters., Implications for Cancer Survivors: Young adult survivors should receive anticipatory guidance about expectations for delivery and content of adult-focused cancer-related follow-up care.

Purpose: How cancer history and distress relate to sleep outcomes of adolescents and young adults (AYAs) is unclear. The current study compares AYA cancer survivors to controls on indicators of sleep and fatigue; examines the concurrent association between psychological status, sleep, and fatigue; and investigates the lagged relationship between sleep and fatigue problems with psychological functioning., Methods: AYA cancer survivors (n = 167) and controls (n = 170), ages 16 to 30, completed measures at a survivorship clinic/primary care visit (time 1) and 2 months later (time 2). Participants completed questions about sleep quality, quantity, sleep medication use, self-reports of sleep problems, and fatigue in addition to measures of depression, anxiety, and posttraumatic stress symptoms (PTSS)., Results: There were no differences in sleep quantity or quality between survivors and controls, but survivors reported significantly more fatigue. Within groups, AYAs with self-reported sleep and fatigue problems reported significantly higher depression, anxiety, and PTS symptoms. Controlling for baseline depression, sleep, and fatigue problems at time 1 significantly predicted depression at time 2 in survivors but not in controls., Conclusion: This study offers important insight into the psychological functioning of childhood cancer survivors and prospectively describes sleep and fatigue as risk factors for poor psychological functioning in survivors. These findings support screening for sleep problems in AYA survivors as these difficulties are closely related to mental health functioning.

Objective: Caregivers of adolescents and young adults (AYA) with complex medical conditions, including brain tumor survivors, have protracted and often complex roles, yet a gap exists in understanding their perceived competence. The aim of this study is to test a hypothesized model based on the theoretical and empirical literature: better caregiver health, better survivor health, and better family functioning contribute directly to fewer caregiving demands, which in turn contribute to greater caregiver competence., Method: Telephone interviews using structured self-report questionnaires were conducted in this cross-sectional study with a sample of 186 caregivers (mothers) of childhood brain tumor survivors aged 14-40 years old who live with at least one parent. Structural equation modeling (SEM) was used to test the hypothesized model., Results: The final SEM model suggests that survivor health and family functioning directly predict caregiver competence. Caregiver health indirectly predicts caregiver competence through caregiver demands and then family functioning. Family income directly predicts family functioning. The model showed adequate fit (CFI = 0.905, TFI = 0.880, and RMSEA = 0.081). Overall, the model accounted for 45% of variance in caregiver competence., Conclusions: For this sample of caregivers of AYA with medically complex conditions, family functioning and the health of survivors are both important to how they evaluate their skills as caregivers. The results of this study underscore the crucial role of care models that focus on optimizing the health of the survivor, caregiver, and family, along with supporting a family centered approach to their care.

Background: Childhood cancer survivors treated with cranial or total body irradiation (TBI) are at risk for growth hormone deficiency (GHD). Recombinant growth hormone (rhGH) therapy is associated with slipped capital femoral epiphysis (SCFE). We compared the incidence of SCFE after TBI versus cranial irradiation (CI) in childhood cancer survivors treated with rhGH., Procedure: Retrospective cohort study (1980-2010) of 119 survivors treated with rhGH for irradiation-induced GHD (56 TBI; 63 CI). SCFE incidence rates were compared in CI and TBI recipients, and compared with national registry SCFE rates in children treated with rhGH for idiopathic GHD., Results: Median survivor follow-up since rhGH initiation was 4.8 (range 0.2-18.3) years. SCFE was diagnosed in 10 subjects post-TBI and none after CI (P < 0.001). All 10 subjects had atypical valgus SCFE, and 7 were bilateral at presentation. Within TBI recipients, age at cancer diagnosis, sex, race, underlying malignancy, age at radiation, and age at initiation of rhGH did not differ significantly between those with versus without SCFE. The mean (SD) age at SCFE diagnosis was 12.3 (2.7) years and median duration of rhGH therapy to SCFE was 1.8 years. The SCFE incidence rate after TBI exposure was 35.9 per 1,000 person years, representing a 211-fold greater rate than reported in children treated with rhGH for idiopathic GH deficiency., Conclusions: The markedly greater SCFE incidence rate in childhood cancer survivors with TBI-associated GHD, compared with rates in children with idiopathic GHD, suggests that cancer treatment effects to the proximal femoral physis may contribute to SCFE., (Copyright © 2013 Wiley Periodicals, Inc.)

Background: We previously developed a reliable and valid method for classifying the intensity of pediatric cancer treatment. The Intensity of Treatment Rating Scale (ITR-2.0) 1 classifies treatments into four operationally defined levels of intensity and is completed by pediatric oncology specialists based on diagnosis, stage, and treatment data from the medical record. Experience with the ITR-2.0 and recent changes in treatment protocols indicated the need for a minor revision and revalidation., Methods: Five criterion raters reviewed the prior items, independently proposing additions and/or changes in the classification of diseases/treatments. Subsequent to a group discussion of the proposed changes, a revised 43-item ITR was evaluated. Pediatric oncologists (n = 47) completed a two-part online questionnaire. Validity of the classifications was determined by the oncologists classifying each disease/treatment into one of the four levels of intensity. Inter-rater reliability was calculated by having each oncologist classify the treatments of 12 sample patients using the new version which we call the ITR-3., Results: Agreement between median ratings of the 43 items for the pediatric oncologists and the criterion raters was high (r = 0.88). The median of the raters was either identical (81%) with the criterion ratings or discrepant by one level. Inter-rater reliability was very high when using the ITR-3 to classify 12 sample patients, with a median agreement of 0.90 and an intraclass correlation coefficient (r(ICC) = 0.86)., Conclusions: With these minor modifications and updates, the ITR-3 remains a reliable and valid method for classifying pediatric oncology treatment protocols., (Copyright © 2011 Wiley Periodicals, Inc.)

Purpose: To describe survivorship services provided by the Children's Oncology Group (COG), an assessment of services was undertaken. Our overall aims were (1) to describe survivorship services, including the extent of services provided, resources (personnel, philanthropy, and research funding), billing practices, and barriers to care and 2) to describe models of care that are in use for childhood cancer survivors and adult survivors of childhood cancer., Methods: One hundred seventy-nine of 220 COG institutions (81%) completed an Internet survey in 2007., Results: One hundred fifty-five (87%) reported providing survivorship care. Fifty-nine percent of institutions provide care for their pediatric population in specialized late effects programs. For adult survivors, 47% of institutions chose models of care, which included transitioning to adult providers for risk-based health care, while 44% of institutions keep survivors indefinitely at the treating institution (Cancer Center Based Model without Community Referral). Sixty-eight percent provide survivors with a copy of their survivorship care plan. Only 31% of institutions provide a detailed summary of results after each clinic visit, and 41% have a database to track survivor health outcomes. Minimal time required for initial and annual survivorship visits is estimated to be approximately 120 and 90 min, respectively. The most prevalent barriers to care were the lack of dedicated time for program development and a perceived insufficient knowledge on the part of the clinician receiving the transition referral., Conclusions: Not all COG institutions provide dedicated survivorship care, care plans, or have databases for tracking outcomes. Transitioning to adult providers is occurring within the COG. Survivorship care is time intensive.

Purpose: The goal of this study was to identify profiles of young adult (YA)-aged cancer survivors' beliefs about their health and well-being. Survivors' beliefs and their associated psychosocial and demographic characteristics may be clinically useful in survivorship care. Patients and methods: YA survivors of pediatric leukemias ( n =51), lymphomas ( n =24), and solid tumors ( n =44), aged 18-29 years old ( N =119), were categorized using cluster analysis based on their responses to the Health Competence Beliefs Inventory, a measure assessing beliefs about their health, satisfaction with healthcare, autonomy, and cognitive competence. Profiles of beliefs generated by cluster analysis were examined using self-report measures of health problems, distress, demographics, and provider-reported health problems and cancer treatment intensity. Results: Three distinct clusters were identified: Adaptive ( n =54), Low Autonomy ( n =25), and Vulnerable ( n =40). Adaptive survivors had positive beliefs, low distress, and minimal health problems. The Low Autonomy survivors were similar to those in the Adaptive cluster except they had low autonomy beliefs and the majority reported living with their parents. The Vulnerable cluster had more negative beliefs, the most medical problems, and the highest levels of distress. Conclusion: Health competence belief profiles identified unique subsets of YA survivors of pediatric cancer that have potentially distinct risk factors. Categorizing survivors by health belief patterns may help healthcare providers treat and educate their patients in ways that are tailored to individual survivors' needs and risks.

Childhood cancer has long-term implications for survivors and their family members. While the impact of cancer on the family continues into adulthood, little research exists on family related issues during this important developmental period. In order to advance our understanding of families of adolescent and young adult (AYA) childhood cancer survivors, a measure of health-related beliefs for parents of AYA cancer survivors was developed. Exploratory factor analysis based on the mothers' data was used to identify four factors among 23 items: Social Competence, Satisfaction with Healthcare, Health Perceptions, and Health Apprehension. The scales are associated with psychological distress, quality of life, and posttraumatic stress symptoms but unrelated to age of the child at diagnosis and cancer treatment intensity. The beliefs identified in this study are consistent with clinical observations of families of young adult survivors and provide indications for the importance of ongoing attention to the families of childhood cancer survivors., ((c) 2011 APA, all rights reserved)

Background: Adolescent and young adult survivors of childhood cancer are a vulnerable population. Health beliefs may be related to necessary follow-up care., Purpose: This study seeks to develop a measure of health beliefs for adolescents and young adults with and without a history of cancer., Methods: Inductive and deductive methods and focus groups were used to develop the Health Competence Beliefs Inventory. Cancer survivors (n = 138) and comparison participants (n = 130) completed the Health Competence Beliefs Inventory and other measures. Healthcare providers reported current medical problems., Results: A series of iterative exploratory factor analyses generated a 21-item four-factor solution: (1) Health Perceptions; (2) Satisfaction with Healthcare; (3) Cognitive Competence; and (4) Autonomy. Survivors reported significantly different Health Competence Beliefs Inventory scale scores than comparisons (p < .05). The Health Competence Beliefs Inventory was associated with beliefs, affect, quality of life, posttraumatic stress symptoms, and medical problems., Conclusions: The Health Competence Beliefs Inventory is a promising measure of adolescent and young adult perceptions of health and well-being.