Publication Abstract

Authors: Keegan TH, Lichtensztajn DY, Kato I, Kent EE, Wu XC, West MM, Hamilton AS, Zebrack B, Bellizzi KM, Smith AW, AYA HOPE Study Collaborative Group

Title: Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study.

Journal: J Cancer Surviv 6(3):239-50

Date: 2012 Sep

Abstract: PURPOSE: We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. METHODS: We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin's lymphoma, non-Hodgkin's lymphoma, germ cell cancer, or sarcoma in 2007-2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. RESULTS: More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms. CONCLUSIONS: Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. IMPLICATIONS FOR CANCER SURVIVORS: We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.