Assessing information and service needs of young adults with cancer at a single institution: the importance of information on cancer diagnosis, fertility preservation, diet, and exercise

Abstract

Background: Young adults (YA) with cancer have unique psychosocial and medical needs. The objective of this study was to identify information and service needs important to YA cancer patients.

Methods: A supportive care needs survey was administered to ambulatory patients (<age 35 years) who were within 5 years of completing therapy at an adult hospital. Participants were asked to rate the importance of 18 sources of information or resources on a scale from 1 to 10. The relationship between gender, type of cancer, current treatment status, and marital status on the importance of these factors was explored using ANOVA.

Results: Median age of 243 respondents was 28 years (range 17-35); 61% male. The most common diagnoses were: lymphoma (28%), leukemia (19%), testis (16%), CNS (9.5%), and sarcoma (8.6%). Forty percent were currently receiving treatment; the majority were single/never married (67%). Thirty-eight percent of respondents felt it was important or very important to receive care in a dedicated unit with other young people. More than 80% rated the following items at least 8/10 in importance: 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. Women were more likely to consider information/service needs more important than men.

Conclusions: YA's have clear supportive care preferences and needs. Developing programs that incorporate the services identified as important should improve quality of life, psychosocial adjustment, and other outcomes during and after cancer therapy.