Youth Cancer Services Experience of Care Study
What's the project about?
The YCS Experience of Care (EoC) study aims to understand the views of patients and their family members/supportive others regarding the care the young person received through the YCS across their cancer journey. It includes a survey for the young person and a survey for their family member/supportive other, designed to collect information about all aspects of the young person’s cancer care (from diagnosis to treatment). The results of the survey will be used to identify areas of YCS needing improvement.
This survey provides AYA patients and their families with an opportunity to share their experiences of their cancer care in a meaningful way. The feedback will be used to identify areas for improvement and will help YCS teams develop their services to the benefit of future AYA cancer patients.
Any AYA cancer patient who was aged between 15 and 25 years during their treatment, who completed active treatment at a cancer service affiliated with a YCS on, or after, 1st Jan 2015 and, who can read and understand English is eligible to participate.
Additionally, an individual who supported the AYA through their cancer experience and provided them with practical and emotional support is also able to complete the family member/supportive other survey if nominated by the AYA.
The YCS EoC Study involves AYAs and their family members/supportive others completing a questionnaire after the young person has completed active treatment through a YCS affiliated hospital or health service.
Participants will be told about the study by a YCS team member once they have completed treatment. If interested in taking part the potential participant will be asked to fill in a consent-to-contact form and nominate a family member/supportive other. Once the consent-to-contact form has been received by Canteen, the young person and their family member will be sent the survey (either via email or in the post). The survey takes approximately 30 minutes to complete.
This study has been approved by the Sydney Children’s Hospital Network Human Research Ethics Committee. Anyone with concerns or complaints about the study should contact the Research Support Office on 02 9382 3587, or email@example.com and quote HREC/16/SCHN/76.