Where to care for childhood cancer survivors? Survivor and oncology service provider perspectives (#224)
Aims: For 95% of childhood cancer survivors, the “cost of cure” is at least one life-altering or life-threatening chronic disease. Consequently, life-long follow-up care has become a priority for early detection/intervention. However, there is little evidence regarding how/where to provide such care as survivors mature from children to adults. This national study addressed this knowledge gap by auditing current long term follow-up care practices and survivors’ preferences for, and barriers to, receiving survivorship-related follow-up care.
Method: In this multi-stage, multi-site study of healthcare professionals (HCP, N=17; response rate 90%) and childhood cancer survivors (>5 years from diagnosis; current N=34; target N=1000), interview and questionnaire data was collected. QSR NVivo9 and PASW20 were used to analyse qualitative and quantitative data, allowing triangulation of data collected from different perspectives.
Results: Currently, 66% of paediatric long term follow-up clinics transition survivors to adult care at age 18-25 years, with remaining clinics providing life-long survivorship care. HCPs reported benefits (e.g. continuity of care) and challenges (e.g. strain on resources versus poor transition options) associated with each model. Long term survivors preferred to be seen face-to-face (74%) by their original treating oncologist (59%) at a paediatric outpatient unit (59%), though accepted transition to an adult clinic was appropriate by age 21 (88%). The majority of survivors reported that it was “not important” to be seen in an area separate from young children (68%) and patients still on active treatment (65%). Many survivors (47%) reported multiple barriers to attending clinic.
Conclusions: Findings highlight the importance of dedicated services for the care of individuals at high risk of developing late effects related to childhood cancer and its treatment. However, significant barriers, such as distance from treating centre and limited resources, remain obstacles in the provision of care into adulthood for this increasing cohort of survivors.