Purpose: Adolescents and young adults (AYAs) experience cancer at a time of significant developmental transition. Both disease and treatment impact psychosocial well-being in significant, persistent ways. While the impacts are now described, and the need for psychosocial care is increasingly well recognized, to date, the barriers in access to care have not been well delineated. This is essential to understand to facilitate access to appropriate care and improve outcomes. Methods: This study explored the barriers in access to psychosocial care for young people. Semistructured, audio-recorded interviews were undertaken with 16 AYAs aged 15-25 years. Eligible participants were diagnosed within the previous 24 months and recruited through the Queensland Youth Cancer Service (QYCS). Transcribed interviews were analyzed using content analysis. Results: Barriers in access to support were related to person-centered, service-related, and systemic factors. Barriers experienced at diagnosis and during treatment were less common compared with barriers after treatment; these were significant and largely related to a lack of holistic, multidisciplinary survivorship care. Conclusion: Barriers in access to psychosocial care are multifactorial, although most can be addressed through health-service responses. Ensuring standardized referral and repeated introduction of psychosocial care for young people is imperative, regardless of location of treatment. Flexible services are especially important for patients treated across different facilities. The development of comprehensive post-treatment survivorship models of care is also essential. Continued evaluation of the experience of young people and the barriers they face is also crucial to ensure responsive service development and promote optimal care.

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.

Background Symptom management is a cornerstone of quality care and has the potential to vastly influence patient experiences. The supportive care needs of children, however, are not well described. Objective The aims of this study were to describe documentation about assessment and occurrence of symptoms in medical records of children with cancer and to compare the profile of documented symptoms with child self-report. Methods Twelve weeks of medical records of children (8–18 years) newly diagnosed with cancer were reviewed, and data were extracted regarding symptom assessment and occurrence. A second cohort of children attending oncology outpatients completed the electronic Symptom Screening in Pediatrics self-report of symptom bother. They also answered additional questions about other symptoms and the experience of self-report. We evaluated the profile of symptoms recorded as assessed by healthcare providers and self-reported by children. Results One thousand three hundred sixteen symptoms were identified in 3642 assessments. The symptoms most commonly documented by medical and nursing staff were nausea, pain, and appetite. Allied health staff most frequently documented fatigue, feeling scared, or sad. Forty-eight children completed self-report for the same symptoms and identified fatigue, appetite, and taste were the most bothersome. Children were positive about the experience of completing self-report. Conclusion This study adds further to the evidence about the importance of obtaining information beyond routine clinical assessment from children themselves. Implications for Practice Healthcare providers do not routinely identify all distressing symptoms during clinical encounters. Use of patient-reported outcome measures in children is feasible and acceptable and empowers children to communicate about symptoms, which can facilitate prompt intervention.