Sexual Health in Adolescents and Young Adults With Cancer.

Sexual health (SH), an integral aspect of overall health and quality of life, can be negatively affected by cancer and cancer treatment. SH is influenced by biological, psychological, social, and cultural factors, and, for adolescents and young adults (AYAs), developmental factors. The AYA population (age 15-39 years) is diverse in terms of psychosexual development, interpersonal relationships, and varying levels of independence, resulting in unique SH needs for this population. AYAs with cancer are particularly vulnerable to unmet SH needs related to contraception and infection prevention, sexual function, body image, and romantic/sexual relationships. Sexual dysfunction during and after cancer treatment is reported by 30%-100% of AYA cancer survivors. Clinical guidelines recommend discussing SH and screening for dysfunction but currently lack specifics regarding psychosexual interventions and strategies for incorporating screening into clinical care. Research and clinical priorities include improved provider-AYA communication regarding SH, standardization of SH measures and screening tools, infrastructure to support the SH needs of AYAs across pediatric and adult clinical environments, and engagement of sexual and gender minority AYAs in research. As the field of SH in cancer evolves, interventions need to be tailored to the developmental needs that are unique to AYAs and address the multidimensional aspects of SH.

Educational Intervention to Address Infertility-Related Knowledge Gaps Among Adolescent and Young Adult Survivors of Childhood Cancer.

Purpose: This study evaluates the impact of a personalized educational session on survivors' knowledge of risk for infertility and describes preferences for reproductive health care. Methods: This was a two-phase prospective study of an individualized education session for adolescent and young adult (AYA) survivors aged 18-21 years. Sessions used sex-specific visual aids (phase I) or a personalized handout (phase II). Surveys assessing knowledge of overall risk for infertility (yes/no), level of risk (none, low, moderate, or high), relative impact of treatment on the window of fertility (same/less than peers), and the need to use protection to prevent pregnancy (yes/no) were completed at baseline and 1-month follow-up. Changes in knowledge were assessed using McNemar's test. Preferences for fertility education and fertility status assessment were ascertained. Results: In phase I (n = 44), the educational intervention improved knowledge on the impact on the fertility window (from 69.7% correct responses to 90.9%; p = 0.03). In phase II (n = 54), the addition of a personalized, take-home visual aid significantly improved knowledge across all four concepts: knowledge of risk (68.4%-93.1%; p = 0.03), risk level (39.5%-86.8%; p < 0.001), impact on the fertility window (55.3%-86.8%; p = 0.003), and protection for pregnancy prevention (62.2%-81.1%; p = 0.03). Nearly all males (97%) and 66% of females preferred private sessions. The majority of survivors (73%) would like to undergo fertility status testing in the next 5 years. Conclusion: In this sample of AYA cancer survivors, individualized education sessions with personalized visual aids and assessment of survivors' understanding of information significantly improved knowledge of key reproductive health concepts.

Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer Survivors.

Background and Objectivs: Survivors of pediatric and adolescent cancer are at an increased risk of chronic and debilitating health conditions and require life-long specialized care. Stand-alone electronic personal health records (ePHRs) may aid their self-management. This analysis characterizes young adult survivors and parents who meaningfully use an ePHR, Cancer SurvivorLinkTM, designed for survivors of pediatric and adolescent cancer. METHODS: This was a retrospective observational study of patients seen at a pediatric survivor clinic for annual survivor care. Young adult survivors and/or parent proxies for survivors <18 years old who completed ePHR registration prior to their appointment or within 90 days were classified as registrants. Registrants who uploaded or downloaded a document and/or shared their record were classified as meaningful users. RESULTS: Overall, 23.7% (148/624) of survivors/parents registered and 38% of registrants used SurvivorLink meaningfully. Young adult registrants who transferred to adult care during the study period were more likely to be meaningful users (aOR: 2.6 (95% CI: 1.1, 6.1)) and used the ePHR twice as frequently as those who continued to receive care in our institution's pediatric survivor clinic. Among survivors who continued to receive care at our institution, being a registrant was associated with having an annual follow-up visit (aOR: 2.6 (95% CI: 1.2, 5.8)). CONCLUSIONS: While ePHRs may not be utilized by all survivors, SurvivorLink is a resource for a subset and may serve as an important bridge for patients who transfer their care. Using SurvivorLink was also associated with receiving recommended annual survivor care.

Infertility Education: Experiences and Preferences of Childhood Cancer Survivors.

The majority of children diagnosed with cancer will become long-term survivors; however, many will suffer late effects of treatment, including infertility. Educating patients about potential risk for infertility is important, yet little is known regarding when patients would like to hear this information. The purpose of this study was to assess young adult survivors' previous experience in receiving education about their risk for infertility and determine their preferences for infertility education at various time points during and after treatment. Only 36% of survivors report receiving education about risk for infertility at diagnosis, 39% at end of therapy, and 72% in long-term follow-up/survivor clinic visits. Survivors consistently identified their oncologist as a preferred educator at each time point. Although almost all participants identified wanting education at diagnosis, this time point alone may not be sufficient. End of therapy and survivorship may be times this message should be repeated and adapted for the survivor's needs and developmental stage: conversations about the impact of cancer treatment on future fertility should be ongoing.

Randomized clinical trial of therapeutic music video intervention for resilience outcomes in adolescents/young adults undergoing hematopoietic stem cell transplant: a report from the Children's Oncology Group.

BACKGROUND: To reduce the risk of adjustment problems associated with hematopoietic stem cell transplant (HSCT) for adolescents/young adults (AYAs), we examined efficacy of a therapeutic music video (TMV) intervention delivered during the acute phase of HSCT to: 1) increase protective factors of spiritual perspective, social integration, family environment, courageous coping, and hope-derived meaning; 2) decrease risk factors of illness-related distress and defensive coping; and 3) increase outcomes of self-transcendence and resilience. METHODS: This was a multisite randomized, controlled trial (COG-ANUR0631) conducted at 8 Children's Oncology Group sites involving 113 AYAs aged 11-24 years undergoing myeloablative HSCT. Participants, randomized to the TMV or low-dose control (audiobooks) group, completed 6 sessions over 3 weeks with a board-certified music therapist. Variables were based on Haase's Resilience in Illness Model (RIM). Participants completed measures related to latent variables of illness-related distress, social integration, spiritual perspective, family environment, coping, hope-derived meaning, and resilience at baseline (T1), postintervention (T2), and 100 days posttransplant (T3). RESULTS: At T2, the TMV group reported significantly better courageous coping (Effect Size [ES], 0.505; P = .030). At T3, the TMV group reported significantly better social integration (ES, 0.543; P = .028) and family environment (ES, 0.663; P = .008), as well as moderate nonsignificant effect sizes for spiritual perspective (ES, 0.450; P = .071) and self-transcendence (ES, 0.424; P = .088). CONCLUSIONS: The TMV intervention improves positive health outcomes of courageous coping, social integration, and family environment during a high-risk cancer treatment. We recommend the TMV be examined in a broader population of AYAs with high-risk cancers.

Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer.

INTRODUCTION: To provide an overview of factors related to recruitment of adolescents and young adults (AYA) into research and recruitment rates and reasons for refusal from a multicenter study entitled "Stories and Music for Adolescent/Young Adult Resilience during Transplant" (SMART). METHODS: A randomized clinical trial study design was used. The settings included 9 hospitals. The sample included AYAs (aged 11-24 years) who were undergoing a stem cell transplant. Several instruments were used to measure symptom distress, coping, resilience, and quality of life in AYA with cancer. RESULTS: A total of 113 AYA were recruited (50%) for this study. Strategies were refined as the study continued to address challenges related to recruitment. We provide a description of recruitment strategies and an evaluation of our planning, implementing, and monitoring of recruitment rates for the SMART study. DISCUSSION: When designing a study, careful consideration must be given to factors influencing recruitment as well as special considerations for unique populations. Dissemination of strategies specific to unique populations will be helpful to the design of future research studies.

Primary care providers as partners in long-term follow-up of pediatric cancer survivors.

PURPOSE: To develop a model of shared healthcare delivery that includes primary care providers (PCP) and ensures best practice in follow-up of pediatric cancer survivors. METHOD: Structured interviews with healthcare professionals (HCPs) were used to ascertain familiarity and confidence in providing care to survivors. Partnerships were made with HCP societies, and survivor care lectures were given at HCP meetings. HCP's preferences for ongoing continuing education (CE) opportunities were ascertained. Cancer SurvivorLink(TM), a web-based tool, was developed to allow patients to securely store their healthcare documents and share them electronically with registered HCPs. Educational material developed for Cancer SurvivorLink(TM) includes CE modules and QuickFacts--concise summaries of late effects. Website utilization was monitored utilizing Google Analytics. RESULTS: HCPs described moderate to very low familiarity with survivor care, but high interest in online CE learning. Thirty-one lectures were given to HCP groups to increase awareness. Preferred types of ongoing CE were: lectures, online text, and video modules. CE material was developed based on feedback from HCPs and website utilizations and includes 19 QuickFacts and 5 CE modules. During the first year, the website had 471 unique visitors and 1,129 total visits. QuickFacts received 345 views with Neurocognitive, Survivor Care 101, and Endocrine being most visited, and 49 CME modules have been completed. CONCLUSIONS: PCPs are interested in partnering in models of shared care for pediatric cancer survivors. Effective educational initiatives include lectures within HCP's professional education constructs and web-based CE opportunities. PCP involvement in survivor care alleviates some barriers to care such as geographic distance to the the cancer center and ensures that more pediatric cancer survivors receive recommended coordinated surveillance for late effects of cancer therapy.