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).

"I Don't Have to be Sick to Still Be Worthy": The Barriers Experienced by Adolescent and Young Adult Cancer Survivors in New Zealand.

Purpose: To identify the spectrum and nature of survivorship barriers experienced by New Zealand's adolescent and young adult (AYA) cancer survivor population. In addition, we explore associations between survivorship barriers and sociodemographic characteristics, cancer type, and day-to-day happiness following the end of treatment. Methodology: Participants were recruited for the online survey from AYA cancer service patient databases. Eligibility criteria included: aged 12-24 years at diagnosis, diagnosed between 2010 and 2019, and completed treatment at least one year prior. The analysis focused on 11 barriers (domains, issues, or concerns) which respondents may have faced during survivorship. Results: Two hundred and eighteen AYA survivors participated in the study. The mean number of impactful survivorship barriers was 2.5 (standard deviation 1.7), with 13 respondents (6.0%) reporting no barriers of concern and 31 (14.2%) reporting 5 or more. A higher number of impactful barriers was associated with lower day-to-day happiness (r = -0.34, p ≤ 0.001). The most commonly identified impactful survivorship barriers were mental health (50.0% of respondents), physical health (43.1%), thinking and memory (33.0%), education and work (27.1%), social life (26.1%), and fertility (22.5%). Subgroup analysis identified significant differences according to gender, age at diagnosis, tumor group, ethnicity, and time since diagnosis. Poor access to health care and unmet needs were common themes. Positive impacts, particularly with regards to family relationships, were also identified. Conclusion: These results will inform initiatives to improve AYA survivorship care in New Zealand. Gaps in service delivery and funding will need to be overcome by utilizing innovative strategies and broad sector engagement.

Health professionals' self-identified knowledge, barriers and educational needs regarding identification and management of adolescent and young adult cancer in New Zealand.

AIM: To explore primary healthcare professionals' (PHPs') knowledge and educational needs regarding identification and referral of adolescents and young adults (AYA) with suspected cancer in New Zealand. METHOD: An anonymous online survey targeting PHPs was distributed through health networks during March-August 2019. The survey covered demographics, knowledge of AYA cancer and related topics and preferred sources of AYA cancer information, which includes professional development. RESULTS: Eighty-three respondents completed the survey. The most prominent education needs were identifying the possible symptoms of AYA cancer, the diagnostic pathways for AYA cancer and the services and supports available for AYAs. Respondents indicated that time was a significant barrier to both diagnosis and professional development regarding AYA cancer. Forty-five respondents (54%) reported that consultation time 'always' or 'most of the time' impacted their ability to explore vague symptoms, and 67% cited time as the biggest barrier to participating in AYA cancer education. CONCLUSION: PHPs are receptive to professional AYA cancer education, and their preference is for online learning. There is a significant self-identified knowledge gap for PHPs related to pre-diagnosis (symptoms and pathways), which could help structure effective and targeted professional education.

An Age Stratified Analysis of the Access to Care Continuum Across Three Tumor Groups: Are There Delays for AYA?

Purpose: Delays in diagnosis and treatment are regularly discussed as potential poor prognostic factors for adolescent and young adult (AYA) cancer patients. We aimed to determine whether AYA cancer patients (15-24 years of age) in the South Island of New Zealand had longer times to diagnosis and treatment than pediatric (<15 years) and adult patients (>24 years) with the same diagnosis. Methods: A retrospective review of medical records was undertaken for 201 recently diagnosed sarcoma, Hodgkin lymphoma (HL), and non-Hodgkin lymphoma (NHL) patients in the South Island. An age stratified analysis was undertaken with a number of intervals related to the time to diagnosis (TTD) and total interval (TI) being determined. Results: Overall, the AYA group's TTD and TI was longer than the pediatric group, but shorter than the adult group. No age-based differences in patient interval (PI) were identified. AYA and adult sarcoma patients had longer TTD and TI than pediatric sarcoma. AYA and pediatric NHL patients had a shorter TTD and TI than adult NHL. No significant age-related interval differences were found in the HL group. Conclusions: AYA patients had a longer TTD and TI when compared with the pediatric group, but not when compared with the adult group. The impact of established AYA barriers to presentation are questioned, given no age-based differences in PI were found. The influence of tumor biology and cancer service delivery is an important consideration. Improved applicability of this type of research will be enabled by international collaboration.

Immune Thrombocytopenia in a Child With Refractory Langerhans Cell Histiocytosis Following Cladribine Containing Therapy.

In this report, we present a young infant with multisystem Langerhans cell histiocytosis, who after cladribine and cytarabine salvage treatment developed immune thrombocytopenia (IT). On review of the literature, there were no previous reports of Langerhans cell histiocytosis-associated IT. Treatment of the IT with intravenous immunoglobulin and oral corticosteroids was unsuccessful. Eltrombopag, in combination with a 4-day course of dexamethasone was commenced as second-line therapy. Platelet recovery occurred 10 days after initiation of eltrombopag. The immune thrombocytopenia remains in long-term remission despite cessation of eltrombopag. Eltrombopag was safe and well tolerated.

Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment: A systematic review.

OBJECTIVE: We conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials. METHODS: We searched seven databases for peer-reviewed literature, published 1990-2017. Of 924 articles identified, 17 studies were eligible for the review. We assessed study quality using the 'Mixed-Methods Appraisal Tool'. We coded the results and discussions of papers line-by-line using nVivo software. We categorized strategies thematically. RESULTS: Five main themes emerged: 1) decision-making as a process, 2) individuality of the process; 3) information provision, 4) the role of communication, or 5) decision and psychosocial support. Families should have adequate time to make a decision. HCPs should elicit parents' and patients' preferences for level of information and decision involvement. Information should be clear and provided in multiple modalities. Articles also recommended providing training for healthcare professionals and access to psychosocial support for families. CONCLUSION: High quality, individually-tailored information, open communication and psychosocial support appear vital in supporting decision-making regarding enrollment in clinical trials. These data will usefully inform future decision-making interventions/tools to support families making clinical trial decisions. PRACTICE IMPLICATIONS: A solid evidence-base for effective strategies which facilitate shared decision-making is needed.

Analysis of common cytogenetic abnormalities in New Zealand pediatric ALL shows ethnically diverse carriage of ETV6-RUNX1, without a corresponding difference in survival.

BACKGROUND: The frequency of common cytogenetic abnormalities in pediatric acute lymphoblastic leukemia (ALL) is known to vary by geographic location and ethnic origin. This study aimed to determine the frequency of hypodiploidy, ETV6-RUNX1, BCR-ABL1, and MLL rearrangement within New Zealand's pediatric ALL population and to assess whether the frequency of these ALL prognostic markers varies according to ethnicity. PROCEDURE: The New Zealand Children's Cancer Registry provided information for all registered pediatric ALL patients that were diagnosed between 2000 and 2009, with medical records available for 246 patients. Each patient's medical record was reviewed to determine the frequency of hypodiploidy, ETV6-RUNX1, BCR-ABL1, MLL rearrangement, and cell lineage. Chi-square tests for independence were undertaken to compare the frequencies of cytogenetic abnormalities according to prioritized ethnicity. RESULTS: The frequency of cytogenetic ALL abnormalities in the New Zealand pediatric population were consistent with international reference values. A low frequency of ETV6-RUNX1 was evident for Maori pediatric ALL patients (5.4%, P = 0.018), when compared to Pacific peoples (21.1%) and non-Maori/non-Pacific peoples (27.4%). This has not impacted on outcome, however, with equivalent 5-year overall survival being observed in Maori (89.4%) compared to Pacific peoples (92.0%) and non-Maori/non-Pacific peoples (90.2%). CONCLUSIONS: A lower frequency of the favorable prognostic marker ETV6-RUNX1 was observed in Maori pediatric ALL patients. This did not translate into poorer survival. Future research into biological and nonbiological prognostic factors in this patient population may assist in explaining this finding.

Nitrous oxide use in first-year students at Auckland University.

In a recent Lancet Case report, a patient presented with subacute combined degeneration of the spinal cord after recreational use of nitrous oxide (N2O). There is very little information about use of this substance as a recreational drug. In a questionnaire-based study, we surveyed 1782 students in their first year at the University of Auckland, New Zealand. 1360 (76%) questionnaires were completed and consistent. 780 (57%) students were aware of recreational use of N2O, 158 (12%) used the substance recreationally, and 39 (3%) inhaled it at least monthly. Users were most likely to be white and to be men. Our results show a high frequency of recreational N2O use in first-year students at Auckland University. Although this study does not accurately reflect use of this substance in the wider community, the high prevalence suggests that presentations of subacute myelopathy in an otherwise fit young person should prompt an enquiry about use of N2O.