Redefining Models of Childhood Cancer Survivorship Care: A Mixed-Methods Evaluation of Patient-Reported Barriers to, and Preferences for, Care

Abstract

Background: As the population of children surviving cancer grows, promoting lifelong survivorship-focused care becomes increasingly important. Many survivors are disengaged from follow-up, mandating alternative models of care. To inform new models of care, 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: 25 years ('older survivors'). Participants completed questionnaires and optional interviews. We used multivariate regressions to identify associations with total reported barriers to care. Findings: 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 was complemented by 151 in-depth interviews. Most participants, across all age groups, preferred specialized follow-up (i.e. involving oncologists, nurses or a multidisciplinary team; 86-97%). Many (36-58%) were unwilling to received community-based follow-up and 32-36% did not have a primary care physician (PCP). More parents (75%) than AYAs (58%) and older survivors (30%) were engaged in specialized follow-up. While follow-up engagement was significantly lower in older survivors, survivors' incidence 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%), belief-related (59%), and financial reasons (57%). Survivors who were older (p<0•001), lived outside a major city (p=0•008), and were further from diagnosis (p=0•014) were more likely to report a higher number of barriers to care. Interpretation: Understanding patient-reported barriers to care, and tailoring care to their follow-up preferences, may improve engagement with care and ensure that the survivorship needs of this population are met. Funding: Christina Signorelli and Joanna Fardell are supported by The Kids’ Cancer Project. Claire Wakefield 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 program 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. These funding bodies 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. ANZCHOG is supported by the Australian Government, through Cancer Australia's Support for Cancer Clinical Trials program. Declaration of Interest: No author has any conflicts of interest to disclose in relation to this manuscript. Ethical Approval: Missing