QOS-25A STUDY OF CHILDHOOD CANCER SURVIVORS' ENGAGEMENT WITH LONG-TERM FOLLOW-UP CARE

Abstract

QOS-25. A STUDY OF CHILDHOOD CANCER SURVIVORS’ ENGAGEMENT WITH LONG-TERM FOLLOW-UP CARE Nicky Thorp1, Katherine Knighting2, Lucy Bray2, James Hayden3, Laura Elder1, Kate Hancock1, Therese Otty1, Julian Hampton-Matthews1, Lynda Appleton1, and Michelle Wright3; The Clatterbridge Cancer Centre NHS Foundation Trust, Wirral, Merseyside, UK; Edge Hill University, Merseyside, UK; Alder Hey Children’s Hospital NHS Foundation Trust, Liverpool, Merseyside., UK In the UK, there are now over 40,000 adult survivors of childhood tumours. However, approximately two-thirds are at risk of continuing substantial illness, impairment and limitations due to adverse late effects of the cancer or treatment received in childhood. To improve their health and well-being, it is essential that they have the opportunity to access an appropriate survivorship multi-agency service to advise and aid in the management of late effects. However, these clinics have high rates of non-attendance and it is challenging to encourage continued engagement with the service by those who arewell and cancer-free. This project sought to examine the perceptions of childhood cancer survivors of a Late Effects Clinic (LEC) via a paper questionnaire using closed and Likert scale questions and open text responses. From the 458 questionnaires posted, 113 were returned (24.7 % response rate). Of these 25[KK1] % had a primary diagnosis of a CNS tumour[KK2] . The majority of respondents had used the LEC on at least 2 occasions (89%, n 1⁄4 101). Most respondents were ‘satisfied’ or ‘very satisfied’ with their LEC appointment (73%, n1⁄4 83) and felt that it was very important to attend LEC (86%, n 1⁄4 97). Not all respondents felt fully informed of the purpose of attending the LEC (21%, n 1⁄4 24) or knowledgeable of their potential late effects and test results (31%, n 1⁄4 35) even though they rated this as very important (89%, n 1⁄4 101). Barriers to attending LEC were given as work commitments (36%, n 1⁄4 43) and the distance to the clinic (40%, n 1⁄4 48). Neuro-Oncology 18:iii145–iii158, 2016. doi:10.1093/neuonc/now081.25 #The Author(s) 2016. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.