Fertility Potential and Gonadal Function in Survivors of Reduced-Intensity Hematopoietic Stem Cell Transplantation.

The use of reduced-intensity conditioning (RIC) regimens has increased in an effort to minimize hematopoietic stem cell transplantation (HCT) end-organ toxicity, including gonadal toxicity. We aimed to describe the incidence of fertility potential and gonadal function impairment in adolescent and young adult survivors of HCT and to identify risk factors (including conditioning intensity) for impairment. We performed a multi-institutional, international retrospective cohort study of patients age 10 to 40 years who underwent first allogeneic HCT before December 1, 2019, and who were alive, in remission, and available for follow-up at 1 to 2 years post-HCT. For females, an AMH level of ≥.5 ng/mL defined preserved fertility potential; an AMH level of ≥.03 ng/mL was considered detectable. Gonadal failure was defined for females as an elevated follicle-stimulating hormone (FSH) level >30 mIU/mL with an estradiol (E2) level <17 pg/mL or current use of hormone replacement therapy (regardless of specific indication or intent). For males, gonadal failure was defined as an FSH level >10.4 mIU/mL or current use of hormone replacement therapy. A total of 326 patients (147 females) were available for analysis from 17 programs (13 pediatric, 4 adult). At 1 to 2 years post-HCT, 114 females (77.6%) had available FSH and E2 levels and 71 (48.3%) had available AMH levels. FSH levels were reported for 125 males (69.8%). Nearly all female HCT recipients had very low levels of AMH. One of 45 (2.2%) recipients of myeloablative conditioning (MAC) and four of 26 (15.4%) recipients of reduced-intensity conditioning (RIC) (P = .06) had an AMH ≥.5 ng/m, and 8 of 45 MAC recipients (17.8%) and 12 of 26 RIC recipients (46.2%) (P = .015) had a detectable AMH level. Total body irradiation (TBI) dose and cyclophosphamide equivalent dose (CED) were not associated with detectable AMH. The incidence of female gonadal hormone failure was 55.3%. In univariate analysis, older age at HCT was associated with greater likelihood of gonadal failure (median age, 17.6 versus 13.9; P < .0001), whereas conditioning intensity (RIC versus MAC), TBI, chronic graft-versus-host disease requiring systemic therapy, and CED were not significantly associated with gonadal function. In multivariable analysis, age remained statistically significant (odds ratio [OR]. 1.11; 95% confidence interval [CI], 1.03 to 1.22) for each year increase; P = .012), Forty-four percent of the males had gonadal failure. In univariate analysis, older age (median, 16.2 years versus 14.4 years; P = .0005) and TBI dose (P = .002) were both associated with gonadal failure, whereas conditioning intensity (RIC versus MAC; P = .06) and CED (P = .07) were not statistically significant. In multivariable analysis, age (OR, 1.16; 95% CI, 1.06-1.27 for each year increase; P = .0016) and TBI ≥600 cGy (OR, 6.23; 95% CI, 2.21 to 19.15; P = .0008) remained significantly associated with gonadal failure. Our data indicate that RIC does not significantly mitigate the risk for gonadal failure in females or males. Age at HCT and (specifically in males) TBI use seem to be independent predictors of post-transplantation gonadal function and fertility status. All patients should receive pre-HCT infertility counseling and be offered appropriate fertility preservation options and be screened post-HCT for gonadal failure.

Children's Oncology Group KidsCare smartphone application for parents of children with cancer.

BACKGROUND: Parents of children with cancer must learn and retain crucial information necessary to provide safe care for their child. Smartphone applications (apps) provide a significant opportunity to meet the informational needs of these parents. We aimed to develop, refine, and evaluate a smartphone app, informed by the Children's Oncology Group (COG) expert consensus recommendations, to support the informational needs of parents of children with cancer. PROCEDURE: We employed a user-centered iterative mixed-methods approach in two phases (prototype development/refinement and pilot testing). We engaged parents and clinicians in evaluating the app via qualitative interviews and standardized tools that measured app quality (Mobile Application Rating Scale [MARS]), usability (System Usability Scale [SUS]), and acceptability (System Acceptability Scale [SAS]). We evaluated early usage patterns after public release. RESULTS: Thirty-two parents and 17 clinicians participated. Mean (± standard deviation [SD]) scores for app quality, usability, and acceptability were: MARS: 4.5 ± 0.7 on a 5-point scale; SUS: 86.7 ± 23.8 on a 100-point scale; and SAS: superior (61%); similar (28%); inferior (11%) to written materials. Qualitative findings largely confirmed the quantitative data. Downloads of the app during the first year following public release have exceeded 5000. CONCLUSIONS: The COG KidsCare app prototype was found to be of high quality and received high usability and acceptability ratings. Further testing is needed to determine app effectiveness in improving parental knowledge regarding care of children with cancer.

A Structured Discharge Education Intervention for Parents of Newly Diagnosed Pediatric Oncology Patients.

Background: Parents of children newly diagnosed with cancer require specialized knowledge and skills in order to safely care for their children at home. The Children's Oncology Group (COG) developed expert consensus recommendations to guide new diagnosis education; however, these recommendations have not been empirically tested. Methods: We used a sequential two-cohort study design to test a nurse-led Structured Discharge Teaching Intervention (SDTI) that operationalizes the COG expert recommendations in the setting of a tertiary children's hospital. Outcomes included parent Readiness for Hospital Discharge Scale (RHDS); Quality of Discharge Teaching Scale (QDTS); Post-Discharge Coping Difficulty (PDCD); Nurse Satisfaction; and post-discharge unplanned healthcare utilization. Results: The process for discharge education changed significantly before and after implementation of the SDTI, with significantly fewer instances of one-day discharge teaching, and higher involvement of staff nurses in teaching. Overall, parental RHDS, QDTS, and PDCD scores were similar in the unintervened and intervened cohorts. Almost 60% of patients had unplanned healthcare encounters during the first 30 days following their initial hospital discharge. Overall nurse satisfaction with the quality and process of discharge education significantly increased post-intervention. Discussion: Although the structure for and process of delivering discharge education changed significantly with implementation of the SDTI, parent RHDS and QDTS scores remained uniformly high and PDCD scores and non-preventable unplanned healthcare utilization remained similar, while nurse satisfaction with the quality and process of discharge education significantly improved, suggesting that further testing of the SDTI across diverse pediatric oncology settings is warranted.

Education Milestones for Newly Diagnosed Pediatric, Adolescent, and Young Adult Cancer Patients: A Quality Improvement Initiative.

The diagnosis of cancer in a child, adolescent, or young adult is an emotionally overwhelming time. To improve the quality of education and support provided to patients and caregivers with a new cancer diagnosis, we executed a quality improvement initiative to (a) define key education milestones for the delivery of essential education during the first 2 months following diagnosis and (b) to define role accountability within the multidisciplinary team for delivery of content and execution of tasks. To develop education milestones, we (a) identified educational content from review of the literature, (b) determined the sequence of content delivery through qualitative interviews with patients and caregivers, and (c) developed education milestones by evaluation of existing workflows. To develop task lists, we (a) determined which multidisciplinary team member was best suited to deliver specific content and (b) defined discrete tasks required to execute education milestones. Key content topics and preferred sequence are as follows: Emotional Adjustment to Diagnosis, When and How to Call the Doctor, Medication Management, Practical Needs, Line Care, and Access to Nontherapeutic Clinical Trials. Eight education milestones were defined across the initial 2 months following cancer diagnosis. The education milestones are paired with task lists. The education milestones and task lists guide the execution of complex education across a multidisciplinary service line in an emotionally challenging time. Early information focuses on essential content, role responsibility is clearly defined, and psychosocial support services are purposefully and iteratively integrated into care during the initial weeks following a cancer diagnosis.

A Standardized Education Checklist for Parents of Children Newly Diagnosed With Cancer: A Report From the Children's Oncology Group.

Parents of children newly diagnosed with cancer must acquire new knowledge and skills in order to safely care for their child at home. Institutional variation exists in the methods and content used by nurses in providing the initial education. The goal of this project was to develop a checklist, standardized across institutions, to guide nursing education provided to parents of children newly diagnosed with cancer. A team of 21 members (19 nurses and 2 parent advocates) used current hospital educational checklists, expert consensus recommendations, and a series of iterative activities and discussions to develop one standardized checklist. The final checklist specifies primary topics that are essential to teach prior to the initial hospital discharge, secondary topics that should be discussed within the first month after the cancer diagnosis, and tertiary topics that should be discussed prior to completion of therapy. This checklist is designed to guide education and will set the stage for future studies to identify effective teaching strategies that optimize the educational process for parents of children newly diagnosed with cancer.