Improving follow-up care for long term survivors of childhood cancer: A new model of care

Childhood cancer survivors are at risk of treatment-related health complications including second cancers and late mortality, requiring surveillance and management. Using a mixed-methods, multi-perspective approach, this body of work aimed to develop a new model of care for optimal follow-up of survivors. In Chapter 2, I outlined key survivorship issues including survivors' long-term medical (e.g. second cancers, cardiac complications, infertility) and psychosocial (poor quality of life, vocational challenges) needs. In Chapter 3, I systematically reviewed the international literature showing that follow-up care engagement improves survivors' knowledge about their cancer history, increases surveillance and late effects detected, and decreases emergency department visits and hospitalisations. In an audit of all 11 Australian and New Zealand survivorship clinics (Chapter 4), I interviewed 19 lead oncologists and nurse consultants who shared their perceived strengths and challenges of current binational survivorship practices. This audit revealed no clearly endorsed model of care, inadequate funding and staffing, and inconsistent practices binationally. I explored predictors of general practitioners (GPs) participation in qualitative research (Chapter 5), based on my experiences recruiting 51 GPs for interviews investigating their role in delivering childhood cancer survivorship care. In Chapter 6, I explored families' confidence in GPs, and GPs' confidence in caring for this population. Many families lacked confidence in GPs to deliver childhood cancer survivorship care. GPs were willing and confident in delivering follow-up care, yet this appeared to be contingent upon increased - and prescriptive - communication between primary and tertiary providers. In a mixed-method study of 633 survivors (Chapter 7), I explored survivor-reported barriers to accessing follow-up care and preferences for the delivery of care. Most survivors preferred an oncologist-led model and reported logistical (e.g. distance, costs) and personal (e.g. wanting to 'get on' with life) barriers to care. Based on the findings of these studies, I proposed a new nurse-led, distance-delivered, intervention called 'Re-engage'. In Chapter 8, I described Re-engage, which aims to empower disengaged survivors (i.e. not receiving cancer-related care). Innovative solutions such as Re-engage are needed to promote engagement in follow-up care and help survivors to live to their fullest potential