The Australian New Zealand Consortium in Children, Adolescents, and Young Adults Oncofertility action plan.

International and national oncofertility networks, including the US-led Oncofertility Consortium, FertiProtekt, and the Danish Network, have played pivotal roles in advancing the discipline of oncofertility over the last decade. Many other countries lack a shared approach to pediatric oncofertility health service delivery. This study aims to describe baseline oncofertility practices at Australian New Zealand Children's Haematology/Oncology Group centers in 2019-2021, describe binational priorities for care, and propose a 5-year action plan for best practice to be implemented by the newly formed Australian New Zealand Consortium in Children, Adolescents, and Young Adults (CAYA) Oncofertility (ANZCO).

High-dose chemotherapy for Ewing sarcoma and Rhabdomyosarcoma: A systematic review by the Australia and New Zealand sarcoma association clinical practice guidelines working party.

INTRODUCTION: Patients with high-risk or metastatic Ewing sarcoma (ES) and rhabdomyosarcoma (RMS) have a guarded prognosis. High-dose chemotherapy (HDT) with autologous stem cell transplant (ASCT) has been evaluated as a treatment option to improve outcomes. However, survival benefits remain unclear, and treatment is associated with severe toxicities. METHODS: A systematic review was conducted, using the population, intervention, comparison outcome (PICO) model, to evaluate whether utilization of HDT/ASCT impacts the outcome of patients with ES and RMS compared to standard chemotherapy alone, as part of first line treatment or in the relapse setting. Medline, Embase and Cochrane Central were queried for publications from 1990 to October 2022 that evaluated event-free survival (EFS), overall survival (OS), and toxicities. Each study was screened by two independent reviewers for suitability. A qualitative synthesis of the results was performed. RESULTS: Of 1,172 unique studies screened, 41 studies were eligible for inclusion with 29 studies considering ES, 10 studies considering RMS and 2 studies considering both. In ES patients with high-risk localised disease who received HDT/ASCT after VIDE chemotherapy, consolidation with melphalan-based HDT/ASCT as first line therapy conveyed an EFS and OS benefit over standard chemotherapy consolidation. Efficacy of HDT/ASCT using a VDC/IE backbone, which is now standard care, has not been established. Survival benefits are not confirmed for ES patients with metastatic disease at initial diagnosis. For relapsed/refractory ES, four retrospective studies report improvement in outcomes with HDT/ASCT with the greatest evidence in patients who demonstrate a treatment response before HDT, and in patients under the age of 14. In RMS, there is no proven survival benefit of HDT/ASCT in primary localised, metastatic or relapsed disease. CONCLUSION: Prospective randomised trials are required to determine the utility of HDT/ASCT in ES and RMS. Selected patients with relapsed ES could be considered for HDT/ASCT.

Clinical Impact of Comprehensive Molecular Profiling in Adolescents and Young Adults with Sarcoma.

Sarcomas are a heterogenous group of tumours that commonly carry poor prognosis with limited therapeutic options. Adolescents and young adults (AYAs) with sarcoma are a unique and understudied patient population that have only achieved modest survival gains compared to other groups. We present our institutional experience of AYAs with sarcoma who underwent comprehensive molecular profiling (CMP) via either large-panel targeted DNA sequencing or whole genome and transcriptome sequencing and evaluated the feasibility and clinical impact of this approach. Genomic variants detected were determined to be clinically relevant and actionable following evaluation by the Molecular Tumour Board. Clinicians provided feedback regarding the utility of testing three months after reporting. Twenty-five patients who were recruited for CMP are included in this analysis. The median time from consent to final molecular report was 45 days (interquartile range: 37-57). Potentially actionable variants were detected for 14 patients (56%), and new treatment recommendations were identified for 12 patients (48%). Pathogenic germline variants were identified in three patients (12%), and one patient had a change in diagnosis. The implementation of CMP for AYAs with sarcoma is clinically valuable, feasible, and should be increasingly integrated into routine clinical practice as technologies and turnaround times continue to improve.

Experiences of Oncofertility Decision-Making and Care in a National Sample of Adolescent and Young Adult Cancer Patients and Parents.

Purpose: Cancer and its treatments are known to compromise fertility in adolescents and young adults (AYAs). The emotional burden of possible infertility is reduced in those who receive supportive oncofertility care. In legal minors, provision of health care must consider the legal context and desire that AYAs have for autonomous decision-making, together with their competence to make health decisions. This has important implications for how oncofertility discussions may, or may not, involve parents. The aim of this study was to explore oncofertility decision-making and care experiences in a national Australian sample of AYA cancer patients and their parents. Methods: AYAs aged 15-25 years and parents were recruited from 17 cancer care sites and CanTeen Australia as part of a national AYA cancer care study. The cross-sectional survey included open-ended questions regarding oncofertility care experiences. We used reflexive thematic analysis to identify themes. Results: Data were available for 99 AYAs and 111 parents. Four themes were identified: emotional care needs; parent-AYA dynamics including AYA autonomy and agency; decision-making considerations including values and practicalities; and reflections on oncofertility care and follow-up. Both AYAs and parents placed importance on AYA autonomy in fertility decision-making, but many AYAs appreciated the role of parents in providing support and guidance throughout the process. Conclusion: Health care professionals are encouraged to autonomously engage AYAs around fertility decision-making, while concurrently offering opportunities that promote parental support. Better psychological support and follow-up oncofertility care are also needed.

Experiences of Family and Partner Support in Fertility Decision-Making Among Adolescents and Young Adults with Cancer: A National Australian Study.

Purpose: To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. Methods: As part of a nationally representative Australian cross-sectional study of 15-25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.2] years at diagnosis; 51% male) were surveyed regarding FP decision-making. Results: One hundred sixty-one (83%) participants reported discussion of potential effects of cancer and its treatment on fertility, of whom 57 (35%) did not undertake FP (51% of females; 19% of males). Parental involvement (mothers 62%, fathers 45%) in decision-making was considered helpful, including for 73% of 20-25-year olds with partners. Sisters and brothers were involved less often, yet rated helpful in 48% and 41% of cases, respectively. Older participants were more likely than younger ones to have involved partners (47% vs. 22%, p = 0.001) and less likely to have involved mothers (56% vs. 71%, p = 0.04) or fathers (39% vs. 55%, p = 0.04). Conclusion: This is the first quantitative study to explore family and partner involvement in AYA FP decision-making in both females and males in a nationally representative sample. Parents are important resources who commonly assist AYAs with these complex decisions. Although many AYAs will be the main decision-makers when it comes to FP, particularly as AYAs mature, these data suggest that resources and support should be available for and inclusive of parents, partners, and siblings.

Evaluating the accuracy and efficacy of an electronic medical record alert to identify paediatric patients with low-risk febrile neutropenia.

BACKGROUND: Point-of-care decision support, embedded into electronic medical record (EMR) workflows, has the potential to improve efficiency, reduce unwarranted variation and improve patient outcomes. A clinical-facing best practice advisory (BPA) in the Epic EMR system was developed to identify children admitted with low-risk febrile neutropenia (FN) who should be considered for treatment at home after a brief inpatient stay. We evaluated the accuracy and impact of this BPA and identify areas for improvement. METHODS: The low-risk FN BPA was co-designed with key-stakeholders and implemented after a one-month testing phase. Mixed methodology was used to collect and analyse data. The sensitivity and positive predictive value of the BPA was calculated using FN episodes captured in a prospectively collected database. Overall effectiveness was defined as the proportion of alerts resulting in completion of a FN risk assessment flowsheet. RESULTS: Over the 12-month period 176 FN episodes were admitted. Overall, the alert had poor sensitivity (58%) and positive predictive value (75%), failing to trigger in 62 (35%) episodes. In the episodes where the alert did trigger, the alert was frequently dismissed by clinicians (76%) and the overall effectiveness was extremely low (3%). Manual review of each FN episode without a BPA identified important design limitations and incorrect workflow assumptions. DISCUSSION: Given the poor sensitivity and limited impact on clinician behaviour the low-risk BPA, in its current form, has not been an effective intervention at this site. While work is ongoing to enhance the accuracy of the BPA, alternative EMR workflows are likely required to improve the clinical impact.

Cost-effectiveness of home-based care of febrile neutropenia in children with cancer.

INTRODUCTION: Home-based treatment of febrile neutropenia (FN) in children with cancer with oral or intravenous antibiotics is safe and effective. There are limited data on the economic impact of this model of care. We evaluated the cost-effectiveness of implementing an FN programme, incorporating home-based intravenous antibiotics for carefully selected patients, in a tertiary paediatric hospital. METHODS: A decision analytic model was constructed to compare costs and outcomes of the home-based FN programme, with usual in-hospital treatment with intravenous antibiotics. The programme included a clinical decision rule to stratify patients by risk for severe infection and home-based eligibility criteria using disease, chemotherapy and patient-level factors. Health outcomes (quality of life) and probabilities of FN risk classification and home-based eligibility were based on prospectively collected data between 2017 and 2019. Patient-level costs were extracted from hospital administrative records. Cost-effectiveness was expressed as the incremental cost per quality-adjusted life year (QALY). FINDINGS: The mean health care cost of home-based FN treatment in low-risk patients was Australian dollars (A$) 7765 per patient compared to A$20,396 for in-hospital treatment (mean difference A$12,632 [95% CI: 12,496-12,767]). Overall, the home-based FN programme was the dominant strategy, being more effective (0.0011 QALY [95% CI: 0.0011-0.0012]) and less costly. Results of the model were most sensitive to proportion of children eligible for home-based care programme. CONCLUSION: Compared to in-hospital FN care, the home-based FN programme is cost-effective, with savings arising from cheaper cost of caring for children at home. These savings could increase as more patients eligible for home-based care are included in the programme.

Systems-Level Change to Alleviate Barriers to Cancer Clinical Trial Access for Adolescents and Young Adults in Australia.

Purpose: International data demonstrate association between clinical trial participation and reduced cancer mortality. Adolescents and young adults (AYA) have low clinical trial enrollment rates. We established a program to understand local barriers and develop targeted solutions that lead to greater AYA clinical trial participation. Methods: A steering committee (SC) with expertise in adult and pediatric oncology, research ethics, and consumer representation was formed. The SC mapped barriers related to AYA trial access and established working groups (WGs) around three themes. Results: The Regulatory Awareness WG identified a lack of understanding of processes that support protocol approval for clinical trials across the AYA age range. A guideline to raise awareness was developed. The Access WG identified challenges for young adults (18-25 years) to access a pediatric hospital to enroll in a pediatric trial. A procedure was developed to streamline applications for access. The first six applications using this procedure have been successful. The Availability WG identified lack of pediatric-adult oncology reciprocal relationships as a barrier to awareness of open trials, and future collaboration. An AYA Craft Group Framework was established to grow relationships within tumor streams across institutions; two craft groups are now operating locally. An additional achievement was a successful request to the Therapeutic Goods Administration for Australian adoption of the Food and Drug Administration Guidance on Considerations for the Inclusion of Adolescent Patients in Adult Oncology Clinical Trials. Conclusion: This multipronged approach to improving AYA clinical trial access has relevance for other health environments. Our knowledge products are available as an online toolkit.

Evaluation of Crizotinib Treatment in a Patient With Unresectable GOPC-ROS1 Fusion Agminated Spitz Nevi.

IMPORTANCE: Spitz nevi are benign melanocytic neoplasms that classically present in childhood. Isolated Spitz nevi have been associated with oncogenic gene fusions in approximately 50% of cases. The rare agminated variant of Spitz nevi, thought to arise from cutaneous genetic mosaicism, is characterized by development of clusters of multiple lesions in a segmental distribution, which can complicate surgical removal. Somatic single-nucleotide variants in the HRAS oncogene have been described in agminated Spitz nevi, most of which were associated with an underlying nevus spilus. The use of targeted medical therapy for agminated Spitz nevi is not well understood. OBSERVATIONS: A girl aged 30 months presented with facial agminated Spitz nevi that recurred rapidly and extensively after surgery. Owing to the morbidity of further surgery, referral was made to a molecular tumor board. The patient's archival nevus tissue was submitted for extended immunohistochemical analysis and genetic sequencing. Strong ROS1 protein expression was identified by immunohistochemistry. Consistent with this, analysis of whole-genome sequencing data revealed GOPC-ROS1 fusions. These results indicated likely benefit from the oral tyrosine kinase inhibitor crizotinib, which was administered at a dosage of 280 mg/m2 twice daily. An excellent response was observed in all lesions within 5 weeks, with complete flattening after 20 weeks. CONCLUSIONS AND RELEVANCE: Given the response following crizotinib treatment observed in this case, the kinase fusion was believed to be functionally consequential in the patient's agminated Spitz nevi and likely the driver mutational event for growth of her nevi. The repurposing of crizotinib for GOPC-ROS1 Spitz nevi defines a new treatment option for these lesions, particularly in cases for which surgery is relatively contraindicated.

Treatment and Outcomes for Central Nervous System Tumors in Australian Adolescents and Young Adults: A Population-Based National Study.

Purpose: While central nervous system (CNS) tumors account for only 10% of adolescent and young adult (AYA) cancers, they are the leading cause of cancer death in this age group. Using national data for Australia, we describe the presentation, treatment, and survival for AYAs diagnosed with CNS tumors. Methods: A population-based study of 15-24 year-olds diagnosed with CNS tumors (low- and high-grade glioma [LGG, HGG], medulloblastoma [MB], primitive neuroectodermal tumors [PNET], ependymoma [EP]) or other (e.g., low-grade neuronal tumor) between 2007 and 2012. Clinical details were extracted from hospital medical records for each patient. Treatment centers were classified as pediatric or adult services. Results: Two hundred seventy-five patients (129 LGG, 77 HGG, 23 MB, 10 PNET, 19 EP, 17 other) were identified, with 17% treated at pediatric hospitals. Symptoms (headache [53%], nausea [31%]) were present for a median of 3 weeks before consulting a health professional. Of LGG patients, 15% had radiotherapy (RT) and 12% chemotherapy (CT). Of HGG patients, 81% had RT and 75% CT. All MB and PNET were managed with surgery, and 74% of MB and 80% of PNET had both RT and CT. Treatment did not differ by treatment center type. Five-year survival for LGG and EP was over 80%, but was 42% for HGG and 20% for PNET. Conclusions: This national, population-based study indicates similar treatment for AYA patients with CNS tumors between pediatric and adult services. Poor outcomes for HGG and PNET patients highlight the need for clinical trials of novel approaches for these tumors.

Home-based care of low-risk febrile neutropenia in children-an implementation study in a tertiary paediatric hospital.

BACKGROUND: Home-based management of low-risk febrile neutropenia (FN) is safe, improves quality of life and reduces healthcare expenditure. A formal low-risk paediatric program has not been implemented in Australia. We aimed to describe the implementation process and evaluate the clinical impact. METHOD: This prospective study incorporated three phases: implementation, intervention and evaluation. A low-risk FN implementation toolkit was developed, including a care-pathway, patient information, home-based assessment and educational resources. The program had executive-level endorsement, a multidisciplinary committee and a nurse specialist. Children with cancer and low-risk FN were eligible to be transferred home with a nurse visiting daily after an overnight period of observation for intravenous antibiotics. Low-risk patients were identified using a validated decision rule, and suitability for home-based care was determined using disease, chemotherapy and patient-level criteria. Plan-Do-Study-Act methodology was used to evaluate clinical impact and safety. RESULTS: Over 18 months, 292 children with FN were screened: 132 (45%) were low-risk and 63 (22%) were transferred to home-based care. Compared with pre-implementation there was a significant reduction in in-hospital median LOS (4.0 to 1.5 days, p < 0.001) and 291 in-hospital bed days were saved. Eight (13%) patients needed readmission and there were no adverse outcomes. A key barrier was timely screening of all patients and program improvements, including utilising the electronic medical record for patient identification, are planned. CONCLUSION: This program significantly reduces in-hospital LOS for children with low-risk FN. Ongoing evaluation will inform sustainability, identify areas for improvement and support national scale-up of the program.

Creating a Global Community of Practice for Oncofertility.

Fertility preservation in the cancer setting, known as oncofertility, is a field that requires cross-disciplinary interaction between physicians, basic scientists, clinical researchers, ethicists, lawyers, educators, and religious leaders. Funded by the National Institutes of Health, the Oncofertility Consortium (OC) was formed to be a scientifically grounded, transparent, and altruistic resource, both intellectual and monetary, for building this new field of practice capable of addressing the unique needs of young patients with cancer. The OC has expanded its attention to include other nonmalignant conditions that can threaten fertility, and the work of the OC now extends around the globe, involving partners who together have created a community of shared effort, resources, and practices. The OC creates materials that are translated, disseminated, and amended by all participants in the field, and local programs of excellence have developed worldwide to accelerate the pace and improve the quality of oncofertility research and practice. Here we review the global oncofertility programs and the capacity building activities that strengthen these research and clinical programs, ultimately improving patient care.

Satisfaction, disappointment and regret surrounding fertility preservation decisions in the paediatric and adolescent cancer population.

PURPOSE: With over 80% of paediatric and adolescent cancer patients surviving into adulthood, quality-of-life issues such as future fertility are increasingly important. However, little is known about regret around decisions to pursue or forgo fertility preservation (FP). We investigated the risk of decision regret in families involved in making a FP decision and explored contributive factors. METHODS: Parents and patients ≥ 15 years were invited to participate. Participants completed a 10-item survey, including a validated Decision Regret Scale. Scores ≥ 30 indicated high regret. Free-text response items allowed participants to provide reasons for satisfaction or regret. RESULTS: A total of 108 parents and 30 patients participated. Most (81.4%) reported low regret (mean score 13.7). On multivariate analysis, predictors of low regret included having a FP procedure and a fertility discussion pre-treatment. Most participants believed that FP offers hope for future fertility. Some reported dissatisfaction with the process of decision-making. CONCLUSION: Overall levels of regret in the study population were low, with factors associated with quality, timely discussion and belief in the success of FP technology being predictors of low regret. However, dissatisfaction with the decision-making process itself revealed that refinements to the programme are required to meet families' needs.

Management of Sarcoma in Adolescents and Young Adults: An Australian Population-Based Study.

Background: While overall survival (OS) for cancer in adolescents and young adults (AYA) has improved, there has been little change in AYA survival for several types of sarcomas. Using national data for Australia we describe (1) the treatment centers caring for AYA sarcoma, (2) treatments provided, and (3) survival outcomes. Procedure: National population-based study assessing treatment of 15-24 year-olds diagnosed with soft tissue sarcoma (STS), bone sarcoma (BS), and Ewing family tumors (ET) between 2007 and 2012. Treatment details were abstracted from hospital medical records. Treatment centers were classified as pediatric or adult specialist AYA/sarcoma center, or other adult. Cox proportional hazard regression analyses examined associations between type of treatment center and OS. Results: Sixty-one hospitals delivered treatment to 318 patients (135 STS; 91 BS, 92 ET), with 9%, 22%, and 17% of STS, BS, and ET, respectively, treated at pediatric and 62%, 59%, and 71% at adult specialist hospitals. Of 18-24 year-olds, 82% of BS, 90% of ET, and 73% of rhabdomyosarcomas at adult specialist centers were on a trial or standard protocol, compared with 42%, 89%, and 100%, respectively, at nonspecialist adult hospitals. After adjusting for disease and patient characteristics, survival was not associated with treatment center type for any disease type. However, ET survival was poorer for patients not receiving a standard chemotherapy protocol. Conclusions: Around 10% of AYA sarcoma patients attending adult hospitals were not on a standard protocol. Poorer survival for ET patients not on a standard protocol highlights the importance of ensuring all patients receive optimal care.

Clinical trial participation by adolescents and young adults with cancer: A continued cause for concern?

International data indicate that rates of clinical trial enrolment for Adolescents and Young Adults (AYAs) with cancer are markedly lower than for any other age group. This paper reviews the recent literature reporting international trends in clinical trial enrolment since 2010. Subsequently, we present the first population-based, national assessment of clinical trial enrolment for AYAs with cancer in Australia. Reported rates of trial enrolment from Australia, Canada, the United States, and the United Kingdom were variable, though consistently low, ranging between 2% and 29%. Trial enrolment was higher for younger AYAs (typically 15-19 years) and those attending pediatric hospitals, and this was replicated in the recent Australian data. The findings highlight a lack of substantial improvement in AYA clinical trial enrolment and in particular, a need for improved opportunities to access trials for patients treated at adult centers.

Factors influencing the provision of fertility counseling and impact on quality of life in adolescents and young adults with cancer.

PURPOSE: This study investigated the impact of fertility-related discussions on Adolescent and Young Adult (AYA) cancer patients' quality of life (QoL) and the factors influencing provision of these discussions. METHODS: Recruitment was conducted through population-based state cancer registries. Eligible AYAs were 15-24 years at diagnosis, 3-24 months postdiagnosis, with any cancer (except early stage melanoma). As part of a larger survey, AYAs were asked about their experiences of fertility-related discussions and QoL (FACT-G). RESULTS: Of the 207 AYAs returning surveys (29% response rate) 88% reported a discussion about infertility risks, 75% reported a discussion about preservation options and 59% were offered a referral to a fertility specialist. Patients attending health services with an AYA focus were more likely than those attending other types of centers to report discussions of fertility preservation (FP) options (85% versus 67%) and referrals (75% versus 49%). Social well-being was positively related to discussions about preservation options and being provided fertility risk information in a sensitive, supportive manner. CONCLUSIONS: Providing a sensitive and proactive discussion about fertility-related risks may benefit AYAs' well-being. Services with an AYA focus are fulfilling their mandate of ensuring optimal fertility-related care for AYA cancer patients.

A Clinical Decision Support System to Assist Pediatric Oncofertility: A Short Report.

PURPOSE: Fertility preservation discussions with pediatric and adolescent cancer patients can be difficult for clinicians. This study describes the acceptability of a fertility clinician decision support system (CDSS). METHODS: A cross-sectional study of clinicians at The Royal Children's Hospital, Melbourne. Participants were trained on CDSS purpose, contents, and use. A survey captured the perceived benefits and weaknesses of the CDSS. RESULTS: Thirty-nine clinicians participated. Over 90% felt the CDSS aims and format were clear, and understood the components. Over 80% felt it would enable adherence to clinical pathways, policy, and standards of care. CONCLUSIONS: The CDSS provided significant perceived benefits to oncofertility care.

Fertility Preservation Toolkit: A Clinician Resource to Assist Clinical Discussion and Decision Making in Pediatric and Adolescent Oncology.

PURPOSE: Fertility preservation (FP) discussions in children with cancer presents unique challenges due to ethical considerations, lack of models-of-care, and the triadic nature of discussions. This study evaluated a fertility toolkit for clinicians involved in FP discussions with pediatric, adolescent, and young adult patients and parents. MATERIALS AND METHODS: A survey-based, longitudinal study of clinicians at The Royal Children's Hospital Melbourne involved in FP discussions undertaken at 3 time-points: 2014, alongside an education session for baseline assessment of oncofertility practices (survey 1); after each toolkit use to evaluate case-specific implementation (survey 2); 2016, to evaluate impact on clinical practice (survey 3). RESULTS: Fifty-nine clinicians completed survey 1. Over 66% reported baseline dissatisfaction with the existing FP system; 56.7% were not confident in providing up-to-date information. Only 34.5% "often" or "always" provided verbal information; 14.0% "often" or "always" provided written information. Survey 2 was completed after 11 consultations. All clinicians were satisfied with the discussions and outcomes using the toolkit. Thirty-nine clinicians completed survey 3. Over 70% felt confident providing up-to-date FP knowledge, 67.7% "often" or "always" provided verbal information, and 35.4% "often" or "always" provided written information. CONCLUSIONS: Clinicians desire improvement in FP practice. The toolkit provided significant perceived and actual benefits.

Experiences of Care of Adolescents and Young Adults with Cancer in Australia.

PURPOSE: To examine the care experiences of Australian Adolescents and Young Adults (AYAs) with cancer during a period when youth cancer services (YCS) were developing across the country. METHODS: A cross-sectional, self-report survey completed by 207 recently diagnosed AYAs with cancer, recruited from the population-based cancer registries of Australia's two most populous states. AYAs were 15 to 24 years old when diagnosed with any form of cancer (except melanoma <3 mm or stage I/II). Respondents indicated whether certain events/experiences occurred at various points along the cancer care pathway and the treatment centers attended. Treatment centers with YCS were identified. RESULTS: Participating AYAs were an average of 9 months post-diagnosis. AYAs were treated in over 60 centers, with only 31% attending YCS. While experiences relating to delivery of treatment were generally positive, supportive care experiences and emotional support were missing for many. Information provision at the end of treatment was low, with 60% not receiving a treatment summary and 50% not receiving a written follow-up care plan. In addition, 42% never/rarely received information relevant to their age, and only 54% reported that healthcare professionals definitely checked their understanding of the information provided. AYAs attending YCS were more likely to report age-appropriate treatment settings, information provision, and emotional support. CONCLUSION: While care experiences were generally positive for most AYAs, attending YCS was associated with better communication and supportive care experiences. As only a third of the AYAs surveyed attended these services, efforts are needed to increase AYA access to YCS.

Fertility Preservation in Children and Adolescents With Cancer: Pilot of a Decision Aid for Parents of Children and Adolescents With Cancer.

BACKGROUND: Future infertility is a significant concern for survivors of childhood and adolescent cancer. Children and adolescents may have the opportunity to undergo fertility preservation (FP) procedures (which preserve gonadal tissue or gametes for future use) prior to the cancer treatment. However, the decision is very complex, as it is often made by parents as proxy decision makers at the time of cancer diagnosis, and is time-sensitive (needing to occur before the cancer treatment begins). Furthermore, FP procedures in children and adolescents are experimental and cannot guarantee future fertility. An uninformed decision may result in future decision regret. OBJECTIVE: This study aimed to assess the acceptability, usability, and feasibility of a Web-based FP decision aid (DA) in parents of children and adolescents with cancer and clinicians. Fertility knowledge and decision regret were compared in families who reviewed the DA compared with those who did not. METHODS: The Web-based DA was developed according to the International Patient Decision Aid Standards. A cross-sectional study of parents of patients with cancer, who discussed fertility, and clinicians at a tertiary children's hospital was undertaken. The acceptability, usability, and feasibility of the DA were assessed using a pre-post survey design. Measures included the validated Decision Regret Scale, a purpose-designed fertility-related knowledge scale, questions regarding satisfaction with the DA, and open-ended responses for additional feedback. Furthermore, clinicians involved in FP were also invited to review the DA. RESULTS: We enrolled 34 parents and 11 clinicians in this study. Participants who reviewed the DA (15 parents and 11 clinicians) expressed satisfaction with its content and functionality. Parents reported an improved understanding of cancer treatments, infertility, and FP procedures and did not report greater decision regret after DA review. Most parents (13/15, 86%) would recommend the DA to other parents. All clinicians had a consensus that this was a valid and relevant information source for all involved in fertility care. CONCLUSIONS: It is an international standard of care to discuss the impact of cancer treatment on fertility before cancer treatment. This is the first fertility DA for parents of children and adolescents with cancer and is found to be relevant and acceptable by parents and clinicians. This DA has the potential to help support parents to make informed fertility-related decisions for their children and adolescents. However, future research is needed to assess the impact of the DA on prospective decision making.