orals Inaugural Victorian Integrated Cancer Services Conference 2013

Youth-friendly cancer care: AYA best practice supportive care (#45)

SArah E Drew 1 2 3 , M McCarthy 3 4 , D Dunt 5 , L Orme 4 6 , T Hotchkin 2 , S M Sawyer 1 2 3
  1. Centre for Adolescent Health, Royal Children's Hospital, Melbourne, Victoria, Australia
  2. Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia
  3. Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
  4. Children’s Cancer Centre, Royal Children’s Hospital, Melbourne, Victoria, Australia
  5. Centre for Health Policy, Programs and Economics, University of Melbourne, Melbourne, Victoria, Australia
  6. onTrac@PeterMac Victorian Adolescent and Young Adult Cancer Service, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia

Purpose: Despite global interest in cancer service reform, evidence for best practice adolescent and young adult (AYA) care is scare. The aim of this study is to investigate on-treatment experiences of AYAs/parents to inform a program logic model of best-practice psychosocial supportive care.

Method: Stage 1 was a qualitative telephone interview study. Identified from clinical databases, participants were 15-25 year olds, 6-24 months from a cancer diagnosis, together with a parent/carer. Nvivo and team discussions informed content and thematic analysis of interview transcripts.

Results:

55 AYAs with a range of diagnoses and from 6 Australian clinical healthcare settings (paediatric, adult, AYA specific), and 46 parents were interviewed. Focusing upon the subgroup of AYA’s 15-19 years treated in paediatric and/or adult settings, several themes emerged. These included: diagnosis delays (often impacted by AYA, clinical and parent communication); pathways to care settings (sometimes multiple different hospitals); and, the concept of an activated patient (degree to which young people are participating in health care decision-making and management). A central finding was the variability in reported clinical efforts to elicit active AYA involvement. This in part may vary according to their location in paediatric or adult settings. We will illustrate these issues in relation to (i) fertility preservation discussions and (ii) consent processes. 

Conclusions:

Data indicate considerable room for improvement in many areas of AYA psychosocial supportive cancer care, with several themes not previously described in the literature. In particular, our data show we can make treatment experiencesage- and developmentally-appropriate but questions remain about applying practices consistently regardless of treatment setting. These findings informed development of a quantitative survey currently being completed by a nationally representative sample. Both data sources will advance the articulation of a best practice model of AYA care.

Funding: This research is funded by Cancer Australia.

Conflict of Interest: None to declare.

Ethics: Research ethics approval has been obtained from all hospitals associated with the patient sample.