New Zealand Adolescent and Young Adult Cancer Action Plan

Objectives

The New Zealand Adolescent and Young Adult Cancer Action Plan 2020–2025 is a national framework for improving optimal, equitable and high-quality medical and supportive cancer care for adolescents and young adults (AYAs) in Aotearoa New Zealand. Its 2025 goal is equitable access regardless of location, age or ethnicity, contributing to the wider aim of cancer survival equity by 2030.[1]It responds to continuing disparities, inequities and variation in cancer outcomes and experience, particularly for Māori.[2][3]

• Reduce unwarranted variation by establishing a nationally agreed AYA cancer pathway that combines local care where possible with centralised decision-making and monitoring.[4]
• Advance equity through stepped psychosocial care, AYA cancer Keyworkers, culturally responsive services, whānau involvement and attention to outcomes beyond survival, including fertility, psychological health, vocational achievement and financial independence.[3][5][6]
• Strengthen data, monitoring and equity-focused reporting, including consideration of an expanded AYA age range from 12–24 to 12–29 years.[7][8]
• Increase access to clinical trials, address survivorship disparities, preserve fertility, improve early diagnosis, and provide coordinated survivorship and palliative care.[8][9][10][11][12]
• Improve age-appropriate information and treatment settings, support safe use of traditional and complementary therapies, promote holistic wellbeing, and expand collaborative AYA-specific and kaupapa Māori research.[12][13][14]

Implementation

Implementation is founded on the 2016 AYA Cancer Network Aotearoa Standards of Care and is intended for government and non-government bodies responsible for funding, policy, planning, programme development and service delivery.[1]The AYA Cancer Network Aotearoa provides strategic direction and clinical leadership, oversees implementation and monitoring, and may adapt the plan for emerging priorities.[2][1]Young people, whānau, the AYA Cancer Consumer Advisory Group, cultural experts and clinical specialists are intended to shape delivery.[15][3]

• Develop the national care pathway and submit an associated business case to Te Aho o Te Kahu, the Cancer Control Agency; agree national protocols for common AYA cancers with tumour and clinical special-interest groups.[4]
• Establish a tiered psychosocial-care framework with health services, non-governmental organisations, community agencies and Māori health providers; use standardised assessment, risk-identification and care-planning tools to match support to need.[5]
• Clarify Keyworker and AYA champion roles, improve referral pathways and timeliness, advocate for adequate resourcing, and reduce the isolation of Keyworker services.[5][7]
• Build a national AYA cancer dataset and quality-performance measures to support case management, planning, research, patient-experience capture and five-yearly national incidence and survival analyses.[7]
• Use the Health Equity Assessment Tool and guidance from cultural and sector experts to ensure initiatives are inclusive of diverse ethnicities, genders, socioeconomic circumstances, locations, disabilities, religions, sexual orientations, migrant backgrounds and whānau structures.[3]
• Enable trial access through shared-care agreements that define clinical, financial and resource responsibilities, workforce training, supportive-care guidance and links with Australian services and adult and paediatric centres.[9]
• Develop whānau-centred information and care tools, strengthen workforce capability through training, qualifications, online learning, fellowships and mentoring, and increase Māori, Pacific and Asian participation in AYA cancer care.[6]
• Re-establish fertility-preservation governance, update national guidelines and pathways, and improve access to consultation and preservation irrespective of location, age or stage of care.[10]
• Deliver national education and communication for primary and youth health providers, alongside a five-year prospective study of diagnostic timelines, mortality and recurrence.[10][11]
• Implement end-of-treatment summaries, care plans and follow-up guidance; pilot a cross-sector survivorship reintegration programme; and establish timely palliative-care pathways, AYA-specific decision resources and expert working-group oversight.[11][12]
• Develop resources on safe traditional and complementary therapies, wellness and psychological-support pathways, age-appropriate treatment environments, and a national research directory and research-priority process.[13][14]

Actions range from short- and medium-term aspirations of two to three years to longer-term objectives over four to five years.[1]The source identifies no quantified plan budget or funding allocation, although it calls for a pathway business case, adequately resourced Keyworker roles, resources for surveillance and palliative care, and assessment of resource implications for extending the AYA age range.[4][5][8][11][12]

Monitoring & Evaluation

Monitoring and evaluation centre on reducing inequities in adolescent and young adult (AYA) cancer outcomes, improving consistency of care, and using national data, patient experience and service-performance information to guide quality improvement. The AYA Cancer Network Aotearoa oversees and monitors implementation and may adapt the plan to emerging priorities.[1]

• Develop a national AYA cancer dataset to support clinical case management, service planning, performance monitoring and research, addressing current gaps in consistent data on diagnostic delay, referral pathways, clinical-trial enrolment and support-service access.[7]
• Establish AYA-specific quality and performance indicators, continue the online AYA cancer self-review process, capture patient experience, and undertake national incidence and survival analysis every five years.[7]
• Implement an equity-focused reporting structure that at minimum collects, analyses and reports ethnicity data, recognising a reported 9% survival difference between Māori and non-Māori/non-Pacific young people that had narrowed but not closed.[3][7]
• Disseminate AYA cancer data and findings promptly to support service and quality improvement across providers.[7]
• Use centralised decision-making and monitoring within a nationally agreed AYA cancer pathway to reduce variation in care and service delivery.[4]
• Standardise psychosocial assessment, risk identification and care-planning tools, and improve the timeliness and rate of referral to regional AYA cancer Keyworkers.[5]

Survival is a principal outcome measure, but the plan also frames equity more broadly, including fertility, psychological health, vocational achievement and financial independence.[3]Geographic and socioeconomic variation require attention: five-year survival across six AYA cancer centres ranged from 77% to 91%, with higher survival associated with less deprivation, major-city residence and living within 20 kilometres of an AYA cancer centre.[16]

• Use targeted research to identify drivers of ethnic, disease-specific, age-related and regional survival disparities, including for Māori and Pacific AYAs and people with central nervous system tumours.[16]
• Use cancer-registry and clinical-trial data as evidence sources; in 2019, the New Zealand Children's Cancer Registry recorded 30 enrolments in 11 open international clinical trials and 75 registrations in eight non-therapeutic studies.[9]
• Conduct a national five-year prospective study of diagnostic timelines, including potential relationships with mortality and recurrence, and use national analysis to target intervention.[10][11]
• Evaluate a cross-sector pilot of a comprehensive AYA survivorship reintegration programme.[11]
• Use feedback from AYAs, whānau, partners, communities and wider social networks to review services and inform improvements.[6]
• Monitor and evaluate kaupapa Māori research, national research priorities and dissemination activities under the Network's research role.[14]

Several baseline findings identify service gaps for subsequent monitoring. Only 22% of young people received a detailed written end-of-treatment summary; 32% of those receiving treatment had not been offered discussion of treatment failure despite wanting this; and 39% of surveyed professionals working with palliative AYAs rarely or never used end-of-life documents when curative treatment was no longer an option.[11][12]Consumer findings also indicated that 49% received counsellor or psychologist support and 65% considered their treatment environment always or often age-appropriate.[13][14]

The source extracts do not provide a complete indicator specification, universal targets, formal reporting timetable, detailed evaluation methodology or wider accountability framework beyond Network oversight, planned research, self-review, analysis and dissemination mechanisms.[1][7][9][16]

Costing & Financing

Financial information is limited. Additional Ministry of Health funding was announced in 2013 to establish the AYA Cancer Network Aotearoa, which is contracted directly to Te Aho o Te Kahu, the Cancer Control Agency, for strategic direction and clinical leadership. The amount and duration of that funding are not specified.[2]

• Develop a supporting business case for a nationally agreed AYA cancer pathway for submission to Te Aho o Te Kahu.[4]
• Advocate for adequate resourcing of AYA Keyworker roles and assess the resource and service-delivery implications, benefits and risks of extending the AYA age range to 29 years.[7][8]
• Clarify financial, clinical and resource responsibilities in shared-care agreements enabling AYAs to travel within New Zealand for eligible clinical trials.[9]
• Address practical and financial barriers affecting young people and whānau, including transport, prescriptions, parking, fuel, telephone access and housing.[4][5]
• Advocate for increased resources to implement post-treatment surveillance guidance and adequately resource age-appropriate palliative-care services.[11][12]

The extracts describe resource needs for data systems, workforce development, fertility preservation, psychosocial support, research, age-appropriate facilities and survivorship services, but do not specify plan-wide budgets, costings, funding allocations, funding gaps, financing sources or economic assumptions.[7][6][10][14]