Objective Many survivors are disengaged from follow-up, mandating alternative models of survivorship-focused care for late effects surveillance. We explored survivors’ barriers to accessing, and preferences for survivorship care.
Methods We invited Australian and New Zealand survivors of childhood cancer from three age groups: <16 years (represented by parents), 16–25 years (adolescent and young adults (AYAs)) and >25 years (‘older survivors’). Participants completed questionnaires and optional interviews.
Results 633 survivors/parents completed questionnaires: 187 parents of young survivors (mean age: 12.4 years), 251 AYAs (mean age: 20.6 years) and 195 older survivors (mean age: 32.5 years). Quantitative data were complemented by 151 in-depth interviews. Most participants, across all age groups, preferred specialised follow-up (ie, involving oncologists, nurses or a multidisciplinary team; 86%–97%). Many (36%–58%) were unwilling to receive community-based follow-up. More parents (75%) than AYAs (58%) and older survivors (30%) were engaged in specialised follow-up. While follow-up engagement was significantly lower in older survivors, survivors’ prevalence of late effects increased. Of those attending a follow-up clinic, 34%–56% were satisfied with their care, compared with 14%–15% of those not receiving cancer-focused care (p<0.001). Commonly reported barriers included lack of awareness about follow-up availability (67%), followed by logistical (65%), care-related beliefs (59%) and financial reasons (57%). Older survivors (p<0.001), living outside major cities (p=0.008), and who were further from diagnosis (p=0.014) reported a higher number of barriers.
Conclusions Understanding patient-reported barriers, and tailoring care to survivors’ follow-up preferences, may improve engagement with care and ensure that the survivorship needs of this population are met.
- paediatric oncology
- models of care
- long-term follow-up
- patient preferences
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Collaborators The ANZCHOG Survivorship Study Group; Dr Frank Alvaro; Professor Richard Cohn; Dr Rob Corbett; Dr Peter Downie; Ms Karen Egan; Ms Sarah Ellis; Professor Jon Emery; Dr Joanna Fardell; Ms Tali Foreman; Dr Melissa Gabriel; Professor Afaf Girgis; Ms Kerrie Graham; Ms Karen Johnston; Dr Janelle Jones; Dr Liane Lockwood; Dr Ann Maguire; Dr Maria McCarthy; Dr Jordana McLoone; Dr Francoise Mechinaud; Ms Sinead Molloy; Ms Lyndal Moore; Dr Michael Osborn; Dr Christina Signorelli; Dr Jane Skeen; Dr Heather Tapp; Ms Tracy Till; Ms Jo Truscott; Ms Kate Turpin; Professor Claire Wakefield; Ms Jane Williamson; Dr Thomas Walwyn and Ms Kathy Yallop.
Contributors CS contributed to the study design and design of the data collection instruments, collected data, carried out the analyses, drafted the manuscript and coordinated revisions. CW and RC conceptualised and designed the study, designed the data collection instruments, coordinated and supervised data collection, reviewed and revised the manuscript. JKMcL conceptualised and designed the study, designed the data collection instruments, contributed to data collection, reviewed and revised the manuscript. JF contributed to data collection, the interpretation of the data, manuscript writing and critically reviewed and revised the manuscript. JMJ, KHT, JE, GM, PD and JES contributed to the interpretation of the data, manuscript writing and critically reviewed and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding CS and JF are supported by The Kids’ Cancer Project. CW is supported by a Career Development Fellowship from the NHMRC of Australia (APP1143767). The Behavioural Sciences Unit (BSU) is proudly supported by the Kids with Cancer Foundation. The BSU’s survivorship research programme is funded by the Kids Cancer Alliance, The Kids’ Cancer Project and a Cancer Council NSW Program Grant (PG16-02) with the support of the Estate of the Late Harry McPaul. ANZCHOG is supported by the Australian Government, through Cancer Australia's Support for Cancer Clinical Trials programme.
Disclaimer The funders did not have any role in the study, nor did they have a role in the writing of the manuscript or the decision to submit it for publication.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The ethics approval was obtained from local boards (South Eastern Sydney Local Health District, Ref: 12/POWH/345).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement No data are available.