New Zealand Adolescent and Young Adult Cancer Action Plan

Objectives

The New Zealand Adolescent and Young Adult Cancer Action Plan 2020 to 2025 seeks to improve outcomes and achieve equity for adolescents and young adults (AYAs) diagnosed with cancer in Aotearoa New Zealand. It aims for all young people diagnosed with cancer to have equitable access to high-quality medical and supportive care by 2025, irrespective of location, age or ethnicity.[1][2]The plan addresses the distinct clinical, developmental, psychosocial and social needs of AYAs, including persistent disparities in outcomes for Māori and other underserved groups.[1][3]

• Reduce unwarranted variation in AYA cancer care through a national pathway that supports local care where possible while applying centralised decision-making and monitoring.[4][5]
• Advance equity in survival, fertility, psychological health, vocational achievement and financial independence, including action on the reported survival gap between Māori and non-Māori/non-Pacific young people.[3]
• Provide equitable stepped psychosocial care, with intensity matched to assessed need and particular attention to disadvantaged young people and whānau.[4][6]
• Strengthen care coordination through a sustainable, nationally consistent AYA Cancer Keyworker model.[7]
• Establish consistent national AYA cancer data, quality monitoring and research arrangements to improve planning, case management, performance and service quality.[8]
• Assess extension of the AYA age range from 12 to 24 years to include people aged 25 to 29, while considering an appropriate care model for 12 to 14 year olds.[8][9]
• Improve access to clinical trials, recognising their potential role as an optimal standard of care and addressing substantially lower AYA enrolment relative to paediatric patients.[10]
• Improve survivorship, follow-up and palliative care, including structured end-of-treatment planning, age-appropriate support and timely palliative-care access where cure is not possible.[11][12]
• Develop a culturally responsive workforce, prioritise fertility preservation, and improve early recognition and referral of possible cancer symptoms.[13][14]
• Provide developmentally appropriate information, treatment settings, psychological and spiritual support, and safe guidance on traditional and complementary therapies, including Rongoā Māori.[15][16][17]
• Strengthen collaborative AYA-specific and kaupapa Māori research, reduce survival and survivorship inequalities, and provide a national advocacy voice for young people with cancer.[17][18]

Implementation

Implementation is led through the AYA Cancer Network Aotearoa, which provides strategic direction and clinical leadership, links professionals and support providers across organisations, and oversees collaborative development across the cancer-care continuum.[1]The network is directly contracted to Te Aho o Te Kahu, the Cancer Control Agency, and is expected to monitor implementation and adapt priorities as needs emerge.[1][2]The approach is informed by the 2016 AYA Cancer Network Aotearoa Standards of Care, the New Zealand Cancer Action Plan 2019 to 2029, evidence reviews, research, District Health Board self-reviews, and input from young people, whānau, consumers and providers.[19][2][20]

• Establish expert-led working or project groups for priority areas, drawing on clinical, cultural, sector and consumer expertise.[2][3]
• Apply equity tools, including the Health Equity Assessment Tool, to ensure initiatives respond to ethnicity, gender, socioeconomic circumstances, sexual orientation, disability and geographical location.[3]
• Develop nationally approved protocols for common AYA cancers, procedural analgesia and sedation guidance, assessment resources, fertility-preservation checklists and education materials.[5]
• Work with health services, Māori health providers, non-governmental organisations and community agencies to agree psychosocial interventions, develop assessment and care-planning tools, and address practical and financial barriers.[6]
• Maintain regional AYA Keyworkers, improve referral timeliness and consistency, implement working-group priorities, and advocate for adequate resourcing.[7]
• Investigate a minimum national AYA cancer dataset or registry, capture patient experience, develop quality-performance indicators, continue self-review, and undertake national incidence and survival analysis every five years.[8]
• Complete a national analysis of the benefits, risks, resources and delivery models associated with extending the AYA age range, then submit a proposal or business case to Te Aho o Te Kahu if revision is recommended.[9]
• Implement shared-care agreements to enable access to eligible clinical trials, defining financial, resource and clinical responsibilities and supporting workforce development across participating services.[10]
• Partner with whānau, communities and Māori to improve cultural responsiveness, develop information and provider tools, and involve whānau in care and treatment decisions.[21]
• Deliver workforce education through training, qualifications, online learning, fellowships and mentorship; re-establish a fertility-preservation working group; and undertake a five-year prospective study of diagnostic timelines.[13][14]
• Pilot and evaluate a comprehensive survivorship programme, develop national surveillance and follow-up guidance, and establish AYA-specific palliative-care pathways, resources, education and expert oversight.[11][12]
• Develop multi-platform information resources, psychological-distress pathways, wellness support, guidance on complementary therapies, age-appropriate treatment environments, and a national research directory and collaboration programme.[15][16][17]

Funding information is limited: additional Ministry of Health funding was announced in 2013 to establish the AYA Cancer Network Aotearoa, but no quantified budget, allocation, implementation cost or financing plan is specified for the action plan’s priorities.[1][2]

Monitoring & Evaluation

Monitoring is intended to be led nationally by the AYA Cancer Network Aotearoa, combining centralised oversight of the care pathway with data, research, patient experience and service self-review to reduce inequities and unwarranted variation.[2][5][8]The framework remains partly developmental: several priority areas propose monitoring or evaluation activities, but a complete common indicator set, reporting cycle and accountability timetable are not specified.[2][3][4][20]

• Use cancer survival data to assess progress by sex, age and prioritised ethnicity, including comparison of 2000 to 2009 with 2008 to 2017.[1][19]Survival among 15- to 24-year-olds in 2008 to 2017 was 84% for males and 85% for females, representing an overall improvement of 4% over the decade.[19]
• Establish a consistent national AYA cancer data approach, including investigation of a minimum dataset or registry, because existing data are not uniform or sufficiently accurate.[8]
• Develop quality-performance indicators, capture patient experience, continue the online AYA cancer self-review process, and conduct national incidence and survival analyses every five years.[8]
• Collect, analyse and report equity-focused data in a timely manner, examining diagnostic delay, referral pathways, clinical-trial participation, support-service access and outcome disparities.[8]
• Assess equity beyond survival through fertility, psychological health, vocational achievement and financial independence, taking account of ethnicity, gender, socioeconomic status, sexual orientation, disability and geography.[3]
• Monitor pathway variation through measures such as clinical-trial access and patient-reported experience. Between June 2017 and June 2018, five of 27 AYAs diagnosed with Hodgkin lymphoma enrolled in a clinical trial, with four enrolments from Auckland and one from Canterbury.[5]Young people in smaller centres were 5.85 times less likely to have discussed fertility effects, while those in paediatric settings were 2.48 times more likely than those in adult settings to report consistently sufficient pain relief or procedural support.[5]
• Undertake national analysis before extending the AYA age range to 29 years, assessing resource and service impacts, benefits, risks and delivery options.[9]Monitor equitable trial access, given enrolment of approximately 5% among New Zealand AYAs aged 15 to 24 compared with approximately 30% to 50% among paediatric patients.[10]
• Use targeted survivorship research and incidence and survival analysis to investigate inequities affecting Māori and Pacific young people, people with central nervous system tumours and regional populations.[22]Five-year survival ranged from 77% to 91% across the six AYA cancer centres and was lower for people in more deprived areas, outside major cities and living more than 20 kilometres from a cancer centre.[22]
• Pilot and evaluate a comprehensive survivorship programme, although evaluation measures and timing are not specified.[11]Use formal end-of-treatment summaries and nationally agreed surveillance and follow-up guidance to improve post-treatment care.[11]
• Conduct a national five-year prospective study of diagnostic timelines and their possible association with mortality and recurrence, with analysis to identify areas needing targeted intervention.[14]
• Strengthen research oversight, including kaupapa Māori research, monitoring and evaluation, and use patient-experience measures to assess treatment environments.[17]Sixty-five per cent of young people reported that their treatment environment was always or often age-appropriate.[17]

Specific gaps remain in monitoring for psychosocial care, workforce development, fertility preservation, palliative care, information provision, complementary therapies and wellbeing support.[6][13][12][15][16]The plan identifies relevant baseline findings, including that only 22% of young people received a detailed written end-of-treatment summary and that 32% had not been offered a discussion about unsuccessful treatment despite welcoming one.[11][12]However, it does not specify formal sanctions, a universal reporting schedule, or named mechanisms for enforcing delivery across all priorities.[2][3][4][20]

Costing & Financing

Financing information is limited. Additional funding was announced by the Ministry of Health in 2013 to establish the AYA Cancer Network Aotearoa, but no amount is provided.[1]Across the action plan, no overall budget, costed implementation plan, programme allocation, financing source, resource-mobilisation target, quantified funding gap or economic assumption is specified.[2][3][4]

• Develop business cases for proposed national changes, including the AYA cancer pathway and any revision of the AYA age range, for consideration by Te Aho o Te Kahu, the Cancer Control Agency.[5][9]The required age-range analysis is intended to identify resource and service-delivery implications, benefits, risks and delivery models, but does not provide quantified costs.[9]
• Advocate for adequate resourcing of regional AYA Keyworker roles and assess the resource implications of potentially extending eligibility to people aged 25 to 29.[7][8]
• Define financial, resource and clinical responsibilities within shared-care agreements enabling travel to eligible clinical trials, while identifying and addressing financial and logistical barriers for young people and whānau.[10]
• Address practical financial barriers to psychosocial support, including transport, prescriptions, parking, telephone costs and benefit interruptions, through resources and innovative solutions of unspecified value.[6]
• Support implementation of post-treatment surveillance guidance and age-appropriate palliative-care services with sufficient resources, without stating funding amounts or sources.[11][12]
• Use shared knowledge and resources between service providers to support implementation, although no monetary valuation is given.[4]
• Prioritise scarce research resources and use them collaboratively; no research budget or allocation is specified.[17]

No budgets or financial values are specified for workforce training, fertility preservation, early diagnosis, survivorship, palliative care, information resources, complementary therapies, psychological support or treatment-environment improvements.[13][14][11][12][15][16][17]