Assessment of adolescent and young adult oncology patient and provider perspectives in Philadelphia (AYA-4P).

Abstract

TPS6604 Background: The overall cancer incidence continues to increase in adolescent and young adult patients (AYAs), defined by the National Cancer Institute as individuals diagnosed between the ages of 15-39. Both disease biology and psychosocial needs are unique for young adults living with cancer. AYAs are more likely to have challenges related to work, insurance, relationships, fertility and emotional distress. Studies demonstrate that specialized supportive care improves outcomes such as health-related quality of life, mental health, and physical functioning. Most AYA oncology programs are developed without patient input and affiliated with pediatrics. The Sidney Kimmel Cancer Center (SKCC) at Jefferson is an adult oncology group serving over 900 new patients annually between the ages of 18-39, but does not have a formal AYA program. With guidance from patient advocates and other validated tools, a unique survey-based needs assessment was created by SKCC to provide data for the development of a comprehensive, patient-centered model of care for AYAs. Methods: A one-time survey will be administered electronically to participants through Qualtrics. Solicitation from SKCC and the Young Adult Cancer Connection, a local patient advocacy group, will occur via social media and email aggregation. Eligible patients are those who received the majority of their cancer care within 30 miles of Philadelphia between the ages of 18-39. Eligible healthcare providers include current advanced practice providers or physicians who have practiced at SKCC for at least 1 year. There are no hypotheses being tested or primary outcome variables, therefore no sample size calculations were performed. A $10 Amazon card is offered as incentive for the patient-directed survey to improve response rates and reach at least 100 completed surveys. The provider survey includes no completion incentive. Each survey should take no longer than 20 minutes to complete and no follow-up is required. Surveys are multiple choice with a single open-ended, free response question at the end for additional comments. Categorical survey responses will be summarized using frequencies and percentages. Descriptive statistics and data visualization will be used to characterize the patient demographics and summarize awareness, experiences, and priorities of the participants. Primary objectives of the surveys are to assess AYAs’ current perspective of age-specific medical services and psychosocial support in Philadelphia, as well as to assess the knowledge and perspective of providers of the current care and available services for AYAs at SKCC. The secondary objective is to identify patient preferences and areas for improvement. By using the data generated from the surveys, SKCC will be more informed in their patient-centric approach to program development in an effort to improve the overall care for Philadelphia’s AYA oncology community.