Poster Presentation Cancer Survivorship 2017

Transition of childhood cancer survivors to adult survivorship care: survivor preferences, and barriers to care (#48)

Joanna E Fardell 1 2 , Beeshman S Nandakumar 1 3 , Claire E Wakefield 1 2 , Christina Signorelli 1 2 , Jane Skeen 4 , Ann M Maguire 5 6 7 , Jordana K McLoone 1 2 , Richard J Cohn 1 2
  1. Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  2. Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, University of New South Wales, Randwick, NSW, Australia
  3. University of New South Wales, Randwick, NSW, Australia
  4. Starship Blood and Cancer Centre, Starship Children's Hospital, Auckland, New Zealand
  5. Discipline of Child and Adolescent Health, The University of Sydney, Sydney, NSW, Australia
  6. Long Term Follow Up Clinic, Department of Oncology, The Children’s Hospital at Westmead, Sydney, NSW, Australia
  7. Institute of Endocrinology and Diabetes, The Children’s Hospital at Westmead, Sydney, NSW, Australia

Aim: Long-term survivorship care is recommended for childhood cancer survivors (CCS) to manage life-long treatment-related ‘late effects’, including complex medical, cognitive or psychosocial issues. Ongoing paediatric-based care is often not possible, requiring CCS to transition into adult-based survivorship care. This study describes CCS’ preferences and barriers to transition to adult-based survivorship care.

Method: CCS and parents (of survivors <16 years) from 11 hospitals around Australia and New Zealand were surveyed (stage 1) and interviewed (stage 2) regarding their transition experiences.

Results: Stage 1: 295 CCS (mean age 26.3years) and 173 parents (survivor mean age 13.5years) were surveyed. Eighteen years old was the most commonly preferred age for transition nominated by survivors (38.9%) and parents (49.2%). A significant minority of survivors (10.5%) and parents (7.6%) reported preferring never to transition out of paediatric specialised follow-up care. Survivors who received radiotherapy were more likely to report a preference for never transitioning (p=.012). No other treatment or clinical variables, or number of current health concerns, were associated with preferred transition age. Perceiving a high risk (p=.019), and reporting greater worry (p=0.038) about late effects were associated with preferring to never transition. Stage 2: In 33 interviews (n=18 survivors, n=15 parents), participants described positive (55%), neutral (15%), or negative (30%) attitudes towards transition. Many survivors were not aware that a transition to adult services would occur, and key barriers included over-dependence on paediatric carers, a lack of confidence in adult-based practitioner’s familiarity of their cancer-related history, inadequate communication and information about survivorship care, and cognitive difficulty.

Conclusions: Given the choice, some survivors may be reluctant to transition out of pediatric-based follow-up. In preparing survivors for transition, survivors’ worry about late effects, communication and confidence in their new survivorship care team should be considered to ensure they remain engaged in essential lifelong follow-up care.