Assessing information and service needs of adolescents and young adults (AYA) at a large adult tertiary care cancer center.

Abstract

e19515 Background: AYA with cancer are a constituency with unique psychosocial and medical needs. Currently, adult oncology programmes are not adequately meeting these needs; focused attention through innovative approaches and programmes are necessary. The objective of this study was to identify important information and service needs of AYA cancer patients. Methods: A modified, validated version of Zebrack’s (2008) supportive care needs survey was administered to ambulatory patients (< age 35 years) who were on therapy or within 5 years of completing therapy. Participants were asked to rate the importance of 18 different sources of information or resources in an AYA programme, on a scale from 1-10. A score of ≥8 was set as the cut off indicating significant importance. Results: Median age of the respondents was 28 years (range 17-35); 61% were male. The most common diagnoses were: lymphoma (28%), leukemia (19%), testis (16%), CNS (9.5%) and sarcoma (8.6%). 40% were currently receiving cancer treatment; the majority were single/never married (67%) and lived at home with their parents (47%) or with a partner (33%). Only 38% of respondents felt it was important or very important to receive their care in a dedicated unit with other young people. More than 80% rated the following items as significantly important: information on their specific malignancy (treatment, risk of recurrence), effects of treatment on fertility, information on maintaining a healthy diet, and exercise/physical fitness during cancer treatment. 50-80% of respondents rated certain items as significantly important including: information on alternative therapy; treatment of infertility; automatic referral to a social worker; counselling to help family members cope; vocational training/education; and counselling for depression, anxiety and emotional stress. Substance abuse counselling and spiritual care resources were rated as significant by < 20% of the sample. Conclusions: AYAs have clear supportive care preferences and needs. Developing programmes that incorporate the services identified as important should improve quality of life, psychosocial adjustment and other outcomes during and after cancer therapy.