Aims: Long term follow-up (LTFU) care is recommended for childhood cancer survivors, who remain at risk of developing life-altering and/or threatening diseases following curative treatment. This study reports on current childhood cancer survivorship care practices across Australia and New Zealand (ANZ), highlighting the challenges long term follow-up clinics face.
Methods: We conducted semi-structured, telephone interviews with the pediatric medical director and clinical nurse consultant from all 11 LTFU clinics at tertiary referral paediatric oncology units across ANZ (n=19; 100% response rate). Data was analyzed thematically using NVivo10.
Results: No uniform model of care for childhood cancer survivors exists in ANZ. Each pediatric oncology centre organically developed its own model of survivorship care, shaped by local resources, staff interest/expertise, institutional policy, and variably employing international guidelines. This has led to a resource duplication between clinics, for example in the development of survivorship care plan templates or general clinic systems. Participants identified three central challenges to the provision of best-practice LTFU care, including insufficient funding, unclear transition pathways and need for further research and collaborative efforts. Lack of funding, especially recurrent funding, was a challenge reported in most clinics, which relied on volunteered time. All participants unanimously identified limited options for transitioning older survivors out of pediatrics to adult care, with highly varying practices in preparation, transition age, resources, and pathways across clinics. Though participants recognised a prescriptive model of care as potentially unfeasible, they endorsed a national, or bi-national, model of care that could be tailored to meet their local needs.
Conclusions: The lack of an accepted model of childhood cancer survivorship care across ANZ prevents the optimal delivery of care to this population. Improved solutions are urgently needed for transitioning survivors to appropriate care entering adulthood, in addition to more securing funding to facilitate the growing number of survivors.