Do specialist youth cancer services meet the physical, psychological and social needs of adolescents and young adults? A cross sectional study.

PURPOSE

To assess unmet information and service needs in adolescent and young adult cancer survivors (15-29 years) who access specialist Youth Cancer Services in Queensland, Australia.

METHODS

Participants were recruited through Youth Cancer Services across Queensland and completed validated Patient Reported Outcome Measures and Patient Reported Experience Measures to assess unmet needs, symptoms and wellbeing and quality of life (QoL) through an online survey. Analysis included Spearman's correlation and t-tests.

RESULTS

The sample (N = 42) was representative in terms of gender, cancer type, location of residence and types of treatment. Total QoL varied substantially within the sample, and 56% of total scores were lower than population norms. QoL was inversely correlated with unmet needs (r = -0.64, p=<0.001). There were no explanatory variables identified associated with higher or lower needs or QoL. Young people reported high needs regarding information and support at diagnosis, and for managing side effects and decision making. Most (61-82%) reported these needs were met. At cancer treatment centres, 42% of young people perceived needs were not met regarding talking to other young people, having access to leisure spaces and relevant supportive information. Participants reported low symptom burden and worry about the future but were concerned about their ability to connect with peers and participate in activities.

CONCLUSIONS

While service and information needs are generally met, young people with cancer who reported higher needs also report substantially lower QoL compared to population norms. Addressing these needs may improve QoL. A continued focus on providing support and services to this population is warranted.