Long-Term Kidney and Cardiovascular Complications in Pediatric Cancer Survivors.

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.

Late effects in survivors of high-risk neuroblastoma following stem cell transplant with and without total body irradiation.

BACKGROUND: Neuroblastoma is the most common extracranial solid tumor in children. Those with high-risk disease are treated with multimodal therapy, including high-dose chemotherapy, stem cell transplant, radiation, and immunotherapy that have led to multiple long-term complications in survivors. In the late 1990s, consolidation therapy involved myeloablative conditioning including total body irradiation (TBI) with autologous stem cell rescue. Recognizing the significant long-term toxicities of exposure to TBI, more contemporary treatment protocols have removed this from conditioning regimens. This study examines an expanded cohort of 48 high-risk neuroblastoma patients to identify differences in the late effect profiles for those treated with TBI and those treated without TBI. PROCEDURE: Data on the study cohort were collected from clinic charts, provider documentation in the electronic medical record of visits to survivorship clinic, including all subspecialists, and ancillary reports of laboratory and diagnostic tests done as part of risk-based screening at each visit. RESULTS: All 48 survivors of BMT for high-risk neuroblastoma had numerous late effects of therapy, with 73% having between five and 10 late effects. TBI impacted some late effects significantly, including growth hormone deficiency (GHD), bone outcomes, and cataracts. CONCLUSION: Although high-risk neuroblastoma survivors treated with TBI have significant late effects, those treated without TBI also continue to have significant morbidity related to high-dose chemotherapy and local radiation. A multidisciplinary care team assists in providing comprehensive care to those survivors who are at highest risk for significant late effects.

Sociodemographics, Health Competence, and Transition Readiness Among Adolescent/Young Adult Cancer Survivors.

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.

Acceptability and feasibility of survivorship care plans and an accompanying mobile health intervention for adolescent and young adult survivors of childhood cancer.

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.

Mothers' and fathers' views of family management and health-related quality of life for young adult survivors of childhood brain tumors.

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.

Feasibility and acceptability of a pilot tailored text messaging intervention for adolescents and young adults completing cancer treatment.

PURPOSE: Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors. METHODS: Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n = 31) or an AYA survivor handbook (n = 30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received one to two health-related text messages per day over 16 weeks. RESULTS: THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability. CONCLUSIONS: Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.

Clinical diagnosis of attention-deficit/hyperactivity disorder in survivors of pediatric brain tumors.

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.

Development of the Pediatric Neuro-Oncology Rating of Treatment Intensity (PNORTI).

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.

Understanding and Improving Knowledge of Cancer Survivorship Care Among College Providers.

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.

Analysis of semen parameters in a young cohort of cancer patients.

BACKGROUND: Infertility can be the result of some common cancer treatments and can significantly impact quality of life. Semen cryopreservation allows for fertility preservation. We analyzed the semen parameters of specimens collected from pubertal males from the Children's Hospital of Philadelphia (CHOP) in order to expand current knowledge on the quality of these specimens and inform a standard clinical practice. PROCEDURE: Males who were at least Tanner stage III and newly diagnosed with cancer at CHOP were approached regarding sperm banking. The success and quality of the samples collected were analyzed and compared in relation to prior treatment, age, and diagnosis. RESULTS: From 399 patients approached for semen collection, 339 (85%) attempted to bank sperm, of which 265 (78%) were successful and 60 (15%) refused to participate. Therapy prior to sperm banking significantly impacted a successful collection (P < 0.01). Only 16.9% of the untreated patients were azoospermic, whereas 84.0% of the treated subjects were azoospermic. Older patients were less likely to be azoospermic and have a greater quality collection when compared with younger patients (P < 0.01). However, 65% of our youngest patients still were able to cryopreserve semen. There was no difference in azoospermia across diagnostic groups (P = 0.35), though there were differences in quality of semen parameters across diagnoses. CONCLUSION: Our data support that sperm banking pubertal males prior to the initiation of therapy is feasible. While there were differences in quality of semen parameters across age and diagnostic groups, most males, regardless of age or diagnosis, had adequate specimens for cryopreservation.

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

Objective: The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods: Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results: Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions: TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.

Discrepancies among Measures of Executive Functioning in a Subsample of Young Adult Survivors of Childhood Brain Tumor: Associations with Treatment Intensity.

OBJECTIVES: Treatments for childhood brain tumors (BT) confer substantial risks to neurological development and contribute to neuropsychological deficits in young adulthood. Evidence suggests that individuals who experience more significant neurological insult may lack insight into their neurocognitive limitations. The present study compared survivor, mother, and performance-based estimates of executive functioning (EF), and their associations with treatment intensity history in a subsample of young adult survivors of childhood BTs. METHODS: Thirty-four survivors (52.9% female), aged 18 to 30 years (M=23.5; SD=3.4), 16.1 years post-diagnosis (SD=5.9), were administered self-report and performance-based EF measures. Mothers also rated survivor EF skills. Survivors were classified by treatment intensity history into Minimal, Average/Moderate, or Intensive/Most-Intensive groups. Discrepancies among survivor, mother, and performance-based EF estimates were compared. RESULTS: Survivor-reported and performance-based measures were not correlated, although significant associations were found between mother-reported and performance measures. Survivors in the Intensive/Most-Intensive treatment group evidenced the greatest score discrepancies, reporting less executive dysfunction relative to mother-reported F(2,31)=7.81, p.05). CONCLUSIONS: There may be a lack of agreement among survivor, mother, and performance-based estimates of EF skills in young adult survivors of childhood BT, and these discrepancies may be associated with treatment intensity history. Neuropsychologists should use a multi-method, multi-reporter approach to assessment of EF in this population. Providers also should be aware of these discrepancies as they may be a barrier to intervention efforts. (JINS, 2016, 22, 900-910).

Relationship between sleep problems and psychological outcomes in adolescent and young adult cancer survivors and controls.

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.

Health-related quality of life of adolescent and young adult survivors of childhood brain tumors.

OBJECTIVE: Our aim was to expand research on predictors of health-related quality of life (HRQOL) for adolescent and young adult survivors of childhood brain tumors who are not living independently by evaluating the mediating role of family functioning in the association of disease severity/treatment late effects with survivor self-report and caregiver-proxy report of physical and emotional HRQOL. METHODS: Mothers (N = 186) and their survivors living at home (N = 126) completed self-report and caregiver-proxy report of physical and emotional HRQOL. Mothers completed family functioning measures of general family functioning, caregiving demands, and caregiver distress. Medical file review and caregiver report were used to evaluate disease severity/treatment late effects. RESULTS: Using structural equation models, family functioning was adjusted for sociodemographic factors. Disease severity/treatment late effects had significant direct effects on self-report and caregiver-proxy report of physical and emotional HRQOL. Family functioning had a significant direct effect on caregiver-proxy report of physical and emotional HRQOL, but these findings were not confirmed for self-report HRQOL. Model-fit indices suggested good fit of the models, but the mediation effect of family functioning was not supported. CONCLUSIONS: Disease severity/treatment late effects explained self-report and caregiver-proxy report of physical and emotional HRQOL for these adolescent and young adult survivors of childhood brain tumors. Family functioning was implicated as an important factor for caregiver-proxy report only. To enhance physical and emotional HRQOL, findings underscore the importance of coordinated, multidisciplinary follow-up care for the survivors who are not living independently and their families to address treatment late effects and support family management.

Testicular tissue cryopreservation in prepubertal male children: an analysis of parental decision-making.

BACKGROUND: Infertility is an unfortunate treatment-related consequence for some pediatric malignancies as well as some non-malignant conditions treated with stem cell transplant. Unlike pubertal males, prepubertal males cannot produce semen for cryopreservation. This manuscript reports on the acceptability and safety of a multi-institutional protocol for offering testicular tissue cryopreservation to families of prepubertal male children at highest risk for infertility. Data on decision influences, decision-making control, and emotional state when considering this option are described. PROCEDURE: Prepubertal males facing gonadotoxic therapy were offered testicular cryopreservation. Post-biopsy, patients were followed for acute side effects. In addition, parents and patients were asked to complete questionnaires, whether or not they chose to cryopreserve tissue. RESULTS: Seventy-four prepubertal male children were approached. Fifty-seven families (77%) consented to the testicular biopsy; 48 of 57 underwent the procedure. There was one post-operative side effect. Parents who agreed to testicular cryopreservation and those that did not felt in control of this decision. Parents who consented to the biopsy and refusers were not deterred by the experimental nature of the protocol. An important decision-making influence was the risk of the biopsy. CONCLUSION: Biopsy and cryopreservation of testicular tissue from prepubertal male children was performed successfully and safely at three institutions. Parents faced with this option at diagnosis can make an informed decision and weigh carefully the risks and benefits. Although asked to make a decision soon after they were given a difficult diagnosis, parents uniformly felt in control of this decision.

Childhood cancer survivors exposed to total body irradiation are at significant risk for slipped capital femoral epiphysis during recombinant growth hormone therapy.

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.

Prospectively examining physical activity in young adult survivors of childhood cancer and healthy controls.

BACKGROUND: This study compares young adult survivors of childhood cancer (YASCC) and young adults without a history of serious illness/injury on physical activity levels and examines psychological predictors of physical activity in survivors over a 2-month period. PROCEDURE: YASCC participants (n = 117) and healthy controls (n = 148), ages 18-30, recruited during cancer survivorship clinic or primary care clinics completed self-report measures of physical activity, health problems, psychological distress, and health beliefs (Health Perceptions, Satisfaction with Healthcare, Cognitive Competence, and Autonomy). Survivorship providers completed ratings of health problems and treatment intensity for survivors. RESULTS: Survivors had significantly lower levels of physical activity than controls. Family income, survivor-reported health problems and less positive health beliefs were associated with lower rates of physical activity. Provider-reported survivor health problems and ratings of cancer treatment intensity were not related to survivor physical activity. Less positive survivor beliefs about their cognitive competence predicted survivor physical activity 2 months later after accounting for other pertinent demographic, medical and psychological variables. CONCLUSIONS: YASCC were significantly less active than healthy controls. YASCC with more self-identified health problems and negative beliefs about their cognitive competence were less physically active. Beliefs about their health and cognitive competencies may be viable areas for assessment and intervention in order to promote increased engagement in physical activity.

Development of a Multidisciplinary Professional Advancement Framework.

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.

Communicating neurocognitive impacts of childhood cancer: Engaging stakeholders to identify research priorities.

OBJECTIVE: Supporting childhood cancer survivors with neurocognitive late effects is critical and requires additional attention in the research arena. This convening project's aim was to engage parents, healthcare providers, and education stakeholders in order to identify research priorities regarding patient/family-provider communication about neurocognitive impacts associated with childhood cancer. METHODS: Specific components of the Stakeholder Engagement in quEstion Development (SEED) method were combined with an online e-Delphi consensus building approach. Multiple modalities were utilized for engagement including in-person/hybrid meetings, email/Zoom/call communications, targeted-asynchronous learning activities by stakeholders, iterative surveys, and hands-on conceptual modeling. RESULTS: Twenty-four (parents n = 10, educators n = 5, healthcare providers n = 9) participated in the year-long project, generating 8 research questions in the stakeholder priority domains of training families/caregiver, access of neuropsychological assessment, tools to facilitate communication and training medical providers. CONCLUSIONS: This paper illustrates a successful stakeholder convening process using multi-modal engagement to establish research priorities. The resulting questions can be utilized to guide research projects that will fill gaps to providing optimal care to children with neurocognitive late effects. PRACTICE IMPLICATIONS: This process can be used as a template for tackling other healthcare issues that span across disciplines and domains, where stakeholders have rare opportunities to collaborate.

A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment.

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.