Authors
Sarah Scruton, Cynthia Kendell, Julee Pauling, Yelena Aizenberg, Alison Wallace, Amy Trottier, Tony Reiman, John Thoms, Robin Urquhart
Published in
Health expectations : an international journal of public participation in health care and health policy. Volume 29. Issue 6.
Abstract
Developments in precision oncology have introduced a new population of patients living long-term while receiving on-going treatment for advanced cancer. These patients experience unique needs and challenges that are not adequately addressed by existing survivorship resources or current models of care. To address these challenges and better support this population, this study aimed to establish patient-identified priority areas for intervention development and health systems change.
Individuals across Canada receiving on-going treatment for advanced cancer took part in semi-structured interviews (n = 22). They were asked to describe the supports they would like to access to improve their quality of life and address the challenges they face. Qualitative descriptive methods were used to analyse the transcribed interviews, in close collaboration with patient partners.
Participants described priority areas encompassing healthcare system improvements, information provision and navigation, mental health and emotional support, healthy living, and practical support. They highlighted the need for integrative communication and collaboration between healthcare providers, as well as guidance towards existing resources and supports. The development or adaptation of supports that are tailored to the unique needs these patients face, and that are offered by providers who understand their needs and experiences, is essential.
To meet the needs of this new population of individuals with advanced cancer, greater investment is needed to tailor existing supports to their specific needs and to strength health system infrastructure to enable collaboration and coordination amongst providers. These findings contribute to ongoing advocacy for prioritising cancer research funding to improve care for this growing population.
Patient partners were actively engaged as members of the research team throughout all stages of the study, including concept development, creation of study materials, data analysis, and manuscript preparation and review. In addition, several members of an existing patient working group (Marathon of Hope Cancer Centres Network Patient Working Group) contributed to specific elements of the study design and procedures.
PMID:
43031382
Bibliographic data and abstract were imported from PubMed on 14 Nov 2026.
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