1 Signorelli C, et al. BMJ Supportive & Palliative Care 2019;0:1–9. doi:10.1136/bmjspcare-2019-002001 Childhood cancer survivorship: barriers and preferences Christina Signorelli , 1,2 Claire Wakefeld, 1,2 Jordana K McLoone, 1,2 Joanna Fardell, 1,2 Janelle M Jones, 3,4 Kate H Turpin, 5 Jon Emery , 6 Gisela Michel, 7 Peter Downie, 8 Jane E Skeen, 9 Richard Cohn, 1,2 ANZCHOG Survivorship Study Group To cite: Signorelli C, Wakefeld C, McLoone JK, et al. BMJ Supportive & Palliative Care Epub ahead of print: [please include Day Month Year]. doi:10.1136/ bmjspcare-2019-002001 ► Additional material is published online only. To view, please visit the journal online (http://dx.doi.org/10.1136/ bmjspcare-2019-002001). For numbered affliations see end of article. Correspondence to Dr Christina Signorelli, Kids Cancer Centre, Sydney Children’s Hospital Randwick, Randwick, NSW 2031, Australia; c.signorelli@unsw.edu.au Received 12 August 2019 Revised 1 October 2019 Accepted 21 October 2019 Original research © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ. What is known about this topic ► Many survivors are disengaged from survivorship care, mandating alternative models of follow-up care to ensure survivors receive appropriate late effects surveillance and management. ► Barriers to accessing follow-up highlight the need for innovative solutions to promote follow-up engagement and reduce the long-term burden of cancer. ► Comprehensive data on childhood cancer survivors’ preferences for follow-up to further promote engagement, and potentially changing preferences across the survivorship trajectory, remains unknown. What this study adds ► Our findings offer insight into the optimal delivery of survivorship care from survivors’/parents’ perspectives. ► Given many high-risk survivors are disengaged from cancer-related care, identifying patient preferences can be used to re-engage survivors who should be receiving cancer-related follow-up. ABSTRACT 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 signifcantly lower in older survivors, survivors’ prevalence of late effects increased. Of those attending a follow-up clinic, 34%–56% were satisfed 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 fnancial 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. INTRODUCTION The long-term impact of childhood cancer is substantial. Survival rates have improved, however reports of late treatment-related morbidities affecting childhood cancer survivors have also proliferated. Up to 88% of survivors experience ‘late effects’, often decades after completing treatment for child- hood cancer. 1 Late effects include second neoplasms, potentially life-threatening organ dysfunction, delayed growth/devel- opment, neurocognitive impairment and psychosocial difficulties. 1 Survivors can have poor knowledge about their diagnosis and treatment, and often underestimate AUTHOR PROOF copyright. on November 17, 2019 by guest. Protected by http://spcare.bmj.com/ BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2019-002001 on 11 November 2019. Downloaded from