Redefining the Impact of Cancer in Aotearoa New Zealand

Abstract

Globally, there are around 20 million new cancer diagnoses each year, with cancer accounting for approximately 15% of all deaths. In Aotearoa New Zealand (AoNZ), cancer diagnoses are projected to increase from 25 700 per year in 2015–2019 to 45 100 per year by 2040–2044, a 76% increase [1]. A cancer diagnosis has a profound and often long-lasting impact on patients and their whānau, extending beyond the treatment period to affect many aspects of daily life. These impacts are not limited to health or quality-of-life (QoL) issues but include multidimensional burdens such as financial strain, social disruption, and psychological stress. Despite widespread recognition of these challenges, we lack a comprehensive way to measure the true impact of cancer, particularly in ways that reflect the lived experiences of patients and their whānau. A broader understanding of survivorship is urgently needed to guide meaningful policy, ensure equitable care, and allocate resources where they are most needed. The use of a tool to identify unmet needs may inform resourcing decisions by improving access to funding for transport, accommodation, disability support, rural outreach, hauora navigators, access to Rongoā, and other culturally appropriate support services.

Current tools for measuring the impact of cancer focus on assessing biomedical outcomes, such as survival rates and disease progression, or health-related QoL for cost assessment analyses. These assessments range from generic QoL questionnaires—such as the SF 36, EuroQol-5 dimensions instrument [2] and the Nottingham Health Profile [3]—to specialised questionnaires that have been validated in patients with cancer, including the European Organization for Research and Treatment of Cancer QLQ-C30 questionnaire [4], the Assessing Quality of Life in Adult Cancer Survivors scale [5] and the Functional Assessment of Cancer Therapy-Br [6]. Research utilising these tools has demonstrated that cancer survivors suffer from poorer quality of life, experience increased rates of anxiety and depressed mood, have more limitations in their activities of daily living, and report poorer health overall when compared to those without a cancer diagnosis [7]. These tools are often used in research to assess their relationship to disease outcomes, rather than to support patients' social, economic, and cultural well-being. Furthermore, cancer follow-up is focused on clinical outcomes (e.g., has the cancer returned) and often deprioritised as they are not as financially valuable as new patient appointments. These appointments could be used to measure and support survivorship well-being.

While these instruments provide valuable insights, they fail to capture a more holistic impact of cancer on patients and their whānau (extended whānau and caregivers), particularly across diverse ethnic and social contexts. A broader understanding of impact that encompasses economic stability, social wellbeing, spiritual and cultural health (including whenua (land), language, customs), emotional resilience, cognitive functioning, interpersonal relationships and connectedness to the community is necessary. These dimensions are of particular importance within indigenous and multicultural communities in which the impact of cancer is more likely to extend beyond the individual to affect the whānau, due to the interconnected nature of social and support networks [8]. The Hua Oranga (a measure of Māori mental health outcomes) developed by Tā Mason Durie, demonstrates how Māori models of health can be adapted and applied across speciliaites to understand experiences that reflect the Māori worldview [9]. Similarily, the Cancer WHIRI model of care aims to enhance the delivery of safe, effective, and equitable health and social services to Māori and their whānau throughout their cancer diagnosis [10]. Location of residence can also influence the direct and indirect costs of accessing treatment, this financial burden can worsen health outcomes if patients are making delays secondary to cost.

In AoNZ, persistent inequalities in healthcare access, experience, and outcomes affect population groups historically underserved by the health system. These include Māori (the Indigenous peoples of AoNZ), Pacific peoples, people with disabilities, low socioeconomic communities, immigrant populations, and those living in rural areas [11, 12]. These measures do not account for the unique challenges faced by these populations, limiting their applicability to accurately measure the impact of cancer among diverse populations. If we continue to rely solely on these tools, we risk exacerbating current inequities by failing to recognize the needs of the population. To manage this issue, there is a need to conceptualize and develop a framework which more accurately reflects the diverse experiences of those and their support networks living with cancer.

The Cancer Rehabilitation Evaluation System tool (CARES) is a broader wellbeing assessment tool that considers both QoL and needs, that was developed to understand the number, type, and severity of difficulties that an individual may experience following their cancer diagnosis [13]. The CARES tool provides a global and individual score for the number of problems and their severity, which can be utilized to track cancer impact across treatments over time. This instrument was designed to be utilized for research as well as clinical practice and has been validated in different cancer types and stages [14]. While this tool captures a broader understanding of cancer's impact compared to QoL measures, it has been developed with a Western framework, and it is unknown how well it reflects the lived experiences of underrepresented groups within AoNZ. Additionally, this tool focuses on the impact at an individual level and does not consider the effect of the illness on the collective units (whānau, hapū, iwi). Research has shown that models of care that acknowledge and include wider dimensions of wellbeing improve patient and whānau engagement and outcomes [15].

In an attempt to address the cultural limitations of these models and improve relevance and face validity, the Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) was developed in 2012 for Indigenous-specific cancer concerns within the Indigenous Australian community [16]. This was an adaptation of the existing Supportive Care Needs Survey-Short Form 34 (SCNS-SF34) to assess financial burden, logistical needs, and cultural issues [16]. Further feasibility assessment studies have been conducted utilizing the SCNAT-IP in other Indigenous Australian populations with good acceptability [17] and have been shown to be broadly representative of Indigenous people with cancer. However, there are no studies like this that have been conducted in a New Zealand cancer population. This highlights a national lack of research into understanding the supportive care needs of those living with cancer.

By redefining how impact is measured, we can work towards a system that places the well-being of patients and their whānau at the forefront of care. A better measurement system has the potential to ensure there is appropriate health funding allocation for underrepresented populations and allow the development of more personalised survivorship care and prioritise holistic well-being that encompasses culturally safe cancer care models. It is paramount that the future of cancer care reflects the realities of those who are living with the disease.