Oral Presentation Clinical Oncology Society of Australia 2014 Annual Scientific Meeting

Childhood cancer survivors: What are their motivators and barriers to participating in long term follow-up care? (#41)

Richard Cohn 1 2 , J.K. McLoone 1 2 , C. Signorelli 1 2 3 , C.E. Wakefield 1 2
  1. Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia
  2. School of Women’s and Children’s Health, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia
  3. Children's Cancer Institute Australia, Lowey Cancer Research Centre, Kensington, NSW, Australia

Aim: For two-thirds of childhood cancer survivors (CCS), the “cost of cure” is at least one life-altering or life-threatening chronic disease. For high risk CCS, follow-up care is recommended for early detection/intervention. Many CCS do not regularly attend
Long-Term Follow-Up (LTFU) clinic. This study assessed motivators and barriers to remaining engaged in follow-up care.

Method: Adult CCS, and parents of CCS <16 years of age, both attenders and non-attenders at LTFU clinic, were surveyed.

Results: To date n = 272 respondents; 53% male; 62% CCS >16 years (mean age 28 years, mean time since diagnosis 21 years), 38% parents of CCSs (mean age of child 12 years, mean time since diagnosis 9 years). 44% do not currently attend a LTFU clinic. 53% of non-attenders are not satisfied with the care they are receiving (compared to 15% of LTFU clinic attendees p,0,000). Non-attendees recognise that attending LTFU clinic is important to learn about late effects (97%), to receive reassurance about their health (97%), to learn about surveillance (95%), and to exclude second cancers (93%). Potential motivators for attenders, additionally, include visiting staff involved in their care (80%), and altruistic factors (helping other CCS 86%). 70% identified at least 1 barrier to attendance. The highest ranked barriers were the costs of attending clinic (40%), lack of awareness regarding the availability of a LTFU clinic (30%) and prompts/reminders to attend once disengaged (28%). 80% have at least 1 unmet information need. Non-attendees reported a lack of genetic information relating to cancer (49%), which was a strong predictor of dissatisfaction with care (r(272) = -1.62, p = 0.010).

Conclusions: For many CCS the traditional model of centralised LTFU clinics is not meeting their service and information needs. Identified motivating factors and perceived barriers need to be considered in designing models of care for CCS.