"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.

Listening to the experts: Parents' perspectives around infection risk and returning to education and social activities following their child's diagnosis of acute lymphoblastic leukemia.

BACKGROUND: During a child's prolonged treatment for acute lymphoblastic leukemia (ALL), there is a need to balance their increased risk of developing infection-related complications with meeting their educational and social needs. AIMS: To determine the safe timing of return to social activities for children undergoing treatment for ALL and to determine how parents perceive and act on advice related to infection risk while navigating their child's "return to normal." METHODS AND RESULTS: Medical and educational attendance records were reviewed for 47 children who were diagnosed with ALL and 24 semi-structured qualitative interviews were conducted with a representative sample of their parents. The majority of children (69%) did not return to education prior to the start of maintenance therapy regardless of the advice that the families received from their healthcare team. Those who returned earlier were at no greater risk of major infection complications (mean = 0.5) than those who did not return until after commencing maintenance (mean = 0.4, P = .74). Parents spoke of the difficulty in obtaining practical, consistent, and timely advice and of balancing infection risk with a desire to return to normalcy. Inconsistent advice and constant vigilance placed a burden on parents which often profoundly affected their mental wellbeing. Overall, parents wanted to make their own decisions about how and when their child returned to education and social activities. They made these decisions based on many factors, of which infection risk was just one. CONCLUSION: Following the study conclusion, a national working group was established-including parent representatives-to implement the study recommendations. This includes the development of a range of practical resources to better support families. Health professional guidelines provide quantitative data pertaining to infection risk, while emphasizing that the returning decisions ultimately rest with the families. This research demonstrates that listening to parents-who are the experts through their lived experiences-is a critical element in creating policies that are responsive, meaningful, and widely accepted.

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.

Childhood cancer registration in New Zealand: A registry collaboration to assess and improve data quality.

AIM: To evaluate the completeness and accuracy of child cancer registration in New Zealand. METHODS: Registrations for children aged 0-14 diagnosed between 1/1/2010 and 31/12/2014 were obtained from the New Zealand Cancer Registry (NZCR) and the New Zealand Children's Cancer Registry (NZCCR). Six key data fields were matched using National Health Index numbers in order to identify and resolve registration discrepancies. Capture-recapture methods were used to assess the completeness of cancer registration. RESULTS: 794 unique cases were reported; 718 from the NZCR, 721 from the NZCCR and 643 from both registries. 27 invalid cancer registrations were identified, including 19 residents of the Pacific Islands who had travelled to New Zealand for treatment. The NZCCR provided 55 non-malignant central nervous system tumour and 16 Langerhans cell histiocytosis cases which were not registered by the NZCR. The NZCR alerted the NZCCR to 18 cases missed due to human error and 23 cases that had not been referred to the specialist paediatric oncology centres. 762 cases were verified as true incident cases, an incidence rate of 166.8 per million. Registration accuracy for six key data fields was 98.6%. According to their respective inclusion criteria case completeness was 99.3% for the NZCR and 94.4% for the NZCCR. For childhood malignancies covered by both registries, capture-recapture methods estimated case ascertainment at greater than 99.9%. CONCLUSION: With two national registries covering childhood cancers, New Zealand is uniquely positioned to undertake regular cooperative activities to ensure high quality data is available for research and patient care.

The burden of cancer in 25-29 year olds in New Zealand: a case for a wider adolescent and young adult age range?

AIMS: New Zealand currently defines the adolescent and young adult (AYA) group for cancer services as young people 12-24 years of age, while other countries favour a designation of 15-29 years. This study was undertaken to compare cancer incidence and survival among 25-29 year olds to New Zealand's younger AYA population and to assess survival for our 15-29 year population against international benchmarks. METHODS: Diagnostic and demographic information for cancer registrations between 2000 and 2009 for 25-29 year olds was obtained from the New Zealand Cancer Registry. Incidence rates (IR) and five-year relative survival estimates were calculated according to AYA diagnostic group/sub-group, sex and prioritised ethnicity. RESULTS: 1,541 new primary malignant cancers were diagnosed (IR: 588 per million). Five-year relative survival was 85%, but was significantly lower for Maori and Pacific peoples (both 77%) compared to non-Maori/non-Pacific peoples (88%). In the overall 15-29 year AYA cohort, disease-specific outcomes for bone tumours (46%) and breast cancer (64%) were inferior to international standards. CONCLUSION: New Zealand 25 to 29 year olds are at twice the risk of developing cancer as those 15-24 years. Given that the survival disparities identified were remarkably consistent with those for younger AYA, consideration should be given widening New Zealand's AYA age range.

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.

Small Numbers, Big Challenges: Adolescent and Young Adult Cancer Incidence and Survival in New Zealand.

PURPOSE: This study was undertaken to determine cancer survival and describe the unique spectrum of cancers diagnosed among New Zealand's adolescents and young adult (AYA) population. METHODS: Registrations for 1606 15-24 year olds diagnosed with a new primary malignant tumor between 2000 and 2009 were obtained from the New Zealand Cancer Registry and classified according to AYA diagnostic group and subgroup, age, sex, and prioritized ethnicity. Age-standardized incidence rates (IRs) per million person years and 5-year relative survival ratios were calculated. RESULTS: Cancer incidence was 228.6 per million for adolescents aged 15-19 years and 325.7 per million for young adults aged 20-24 years. Overall IRs were consistent across all ethnic groups but there were unique ethnic differences by tumor group including a higher incidence of bone tumors, carcinoma of the gastrointestinal tract, and gonadal germ cell tumors among Maori, a higher incidence of leukemia among Pacific peoples, and a higher incidence of melanoma among non-Maori/non-Pacific peoples. Five-year relative survival for adolescents (75.1%) and AYA overall (80.6%) appeared poorer than had been achieved in other high-income countries. Maori (69.5%) and Pacific (71.3%) AYA had lower 5-year survival compared to non-Maori/non-Pacific peoples (84.2%). CONCLUSION: The survival disparities observed require further investigation to identify and address the causes of these inferior outcomes. The newly established AYA Cancer Network Aotearoa has been tasked with improving cancer survival and care and ensuring equality of access for New Zealand AYAs with cancer.