"A Wanderer's Tale": The development of a virtual reality application for pain and quality of life in Australian burns and oncology patients.

OBJECTIVES: The primary objective of this study was to co-design and conduct a pilot evaluation of a novel, immersive virtual reality (VR) experience for procedural pain and anxiety in an Australian healthcare setting. The secondary objective was to identify key parameters that can facilitate the development and implementation of VR experiences in clinical practice. METHOD: A qualitative, Design Box method was selected for co-design. It was used with adult burns survivors and adolescents and young adults (AYAs) with cancer, and healthcare professionals from these fields to identify the practical and design parameters required for the application of VR technology within the clinical setting. Results informed the development of the VR experience that was evaluated by consumers and healthcare professionals, who completed qualitative surveys. Thematic analysis was conducted on co-design notes and survey data. RESULTS: Procedural pain and management was a challenge for both cohorts, but particularly the burns cohort. Anxiety was significant challenge for both cohorts. Boredom and quality of life was a significant challenge, particularly for the AYA oncology cohort. These results informed the development of "A Wanderers Tale," an Australiana-themed, gaze-controlled VR application for Oculus Quest platforms. Thematic analysis results suggest that cultural preferences, procedural contexts of use, and agency through customization and interaction are three parameters to consider when creating or selecting VR experiences for application in health. SIGNIFICANCE OF RESULTS: This work describes a novel method for the use VR as an adjuvant pain management tool in patients with burns and cancer. The VR experience may provide a culturally, practice and procedure-appropriate tool in comparable settings of care. The study also describes interdisciplinary co-design and evaluation approaches that can help maximize the use of VR to improve healthcare approaches that address clinical challenges in pain, anxiety, and quality of life for patients while in hospital.

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support.

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.

Cancer Incidence, Mortality, and Survival for Children, Adolescents, and Young Adults in Queensland Between 1987 and 2016.

Purpose: Cancer remains the most common cause of disease-related death among young people and carries a significant burden. In the absence of prior state-based Australian epidemiological studies, this retrospective cohort study reviewed all cases of invasive cancer diagnosed in Queensland children, adolescents, and young adults (AYAs) (0-39 years) from 1987 to 2016 using the Queensland Oncology Repository (QOR). Methods: Cancers were classified according to Surveillance, Epidemiology and End Results (SEER) AYA site recode. Age-standardized rates (ASRs) were calculated. JoinPoint regression examined trends in ASRs across three age cohorts, for three decades (1987-1996, 1997-2006, and 2007-2016). Results: In total, 3,576 children aged 0-14 years (ASR = 15.2/100,000), 6,441 aged 15-24 years (ASR = 39.3/100,000), and 29,923 (ASR = 122.6/100,000) aged 25-39 years were diagnosed. Incidence increased for female children, and leukemia was the most common diagnosis. For those 15-24 years, incidence increased initially before decreasing and was higher than other nationally reported rates. For those 25-39 years, incidence increased. For the older cohorts, the most common diagnosis was melanoma. All cohorts demonstrated a decline in mortality and improvement in 5-year relative survival, with those 0-14 years demonstrating the greatest gains. The lowest survival for all cohorts was associated with central nervous system tumors. Conclusion: These results highlight areas in need of further investigation to improve survival, reduce the burden of cancer for young people, and aid service delivery. Future studies should focus on cancer biology, early detection, barriers in access to clinical trials, innovative models of care, improved data collection, and patient-reported outcomes.

Prevalence and Intensity of Pain and Other Physical and Psychological Symptoms in Adolescents and Young Adults Diagnosed with Cancer on Referral to a Palliative Care Service.

PURPOSE: While adolescent and young adult (AYA) oncology is recognized as a distinct specialty, there remains a paucity of literature documenting symptomatology in this cohort. This study aimed to identify the prevalence, severity, and mechanism of pain and other symptoms in AYA patients referred to a palliative care service in a specialist Australian cancer center. METHODS: A retrospective design analyzed the case file data of 33 eligible AYA patients aged 15-25 years old at diagnosis and two randomly selected control groups of patients >25 years old: unmatched and matched for diagnosis and sex. All cases were referred to the palliative care service between July 2009 and June 2012. Descriptive statistics, analysis of Edmonton Symptom Assessment Scale (ESAS) and Edmonton Classification System of Cancer Pain (ECS-CP) data, and non-parametric tests were performed. RESULTS: The most common malignancies among the AYA patients were sarcoma and hematological cancers. All AYA patients reported pain syndrome on the ECS-CP compared with 85% of the matched controls (p=0.018). An age group effect was found for mechanisms of pain (p=0.035). A trend toward more neuropathic pain among AYA cases was also found (59% vs. 39%). The most common ESAS symptoms in AYAs were pain (91%), diminished well-being (76%), fatigue (75%), and decreased appetite (67%). CONCLUSION: AYA cancer patients appear to experience a unique symptom profile with high symptom prevalence and complexity. Further research is warranted to identify determinants and inform integration of supportive and palliative care services for this unique patient cohort.