"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.

Mental health care needs in cystic fibrosis: A scoping review.

People with cystic fibrosis experience rates of anxiety and depression that are considerably higher than those of the general population. Research suggests low mental health functioning can lead to poor health outcomes and quality of life for this population. Consequently, recognition of the need for routine mental health screening and referral in cystic fibrosis care is increasing. Yet to date, less is known about the actual mental health care needs of people with cystic fibrosis. This scoping review sought to address this gap by examining the mental health care needs of adults and adolescents living with cystic fibrosis, and how are these needs are (or are not) being met. Findings suggest current efforts at mental health care provision do not adequately meet the needs of people with cystic fibrosis, highlighting the urgency of conducting high quality intervention research to support effective mental health care for this population.

Understanding motivation for Australian adolescents and young adults with cystic fibrosis: Modifiable factors to support self-management.

Cystic fibrosis (CF) is Australia's most common life limiting genetic condition, characterised by declining health and quality of life (QoL) over time. Despite improvements in treatment, there remains no cure. Adolescents and young adults (AYAs) with CF experience broad impacts to psychosocial functioning and QoL, as well as major transitions in care, all at a time of significant developmental change. The importance of developmentally tailored approaches to youth health care and self-management for young people with CF are well understood. However, to date, models of youth specific self-management have been lacking and motivation for young people with CF has not been well explored. This qualitative study, based on a social constructionist epistemological framework, addresses this gap. A total of 21 AYAs aged 15-30 years were recruited through one paediatric and one adult Australian CF centre. Demographic, clinical and distress data were captured to describe health complexity. Semi-structured interviews were audio-recorded, transcribed and analysed using thematic analysis. Participants were representative of Australian AYAs with CF by demography and clinical status. Alarmingly, over a third reported clinically significant distress. Two themes emerged. The first Identified impacts to motivation and self-management resulting from the challenges of managing CF, life and care. These included time and competing priorities, changing health statis, mental health, social factors, unmet needs and health system complexity. The second identified factors that support motivation including: achievement, meaning and purpose; consequence avoidance; and accountability. These results illustrate the importance of AYA specific, theoretically founded, holistic self-management models which extend beyond current theoretical approaches that aim to understand behaviour change or address barriers, in isolation from motivation. Improved approaches to care based on these findings are essential to foster positive behavioural change, support self-management and foster the best health outcomes for young people living with CF.

Coping with cancer: A qualitative study of adolescent and young adult perspectives.

OBJECTIVES: Cancer can have long-term biopsychological impacts for young people that persist for years. To promote adjustment, it is essential to understand how young people cope, yet this is relatively understudied. METHODS: This study explored the coping strategies using semi-structured interviews with 16 young people with cancer aged 15-24 years. Eligible participants were diagnosed within the previous 24 months and recruited through Australian Youth Cancer Services. Transcribed interviews were analysed using content analysis. RESULTS: Coping strategies included: seeking support; controlling the focus; avoiding negatives and staying positive; meaning making and; changes with time. During treatment, seeking support, focussing on the present, distraction and avoidance were commonly applied. Following treatment, planning for the future, avoidance of re-traumatising situations and meaning making were used. CONCLUSION: Findings support the concept of coping as a dynamic process where different strategies are used depending on the stressor, available resources and previous experiences. PRACTICE IMPLICATIONS: Comprehensive, developmentally appropriate psychosocial assessments, open communication, education and information provision, as well as appropriate referral for support are essential, particularly for young cancer survivors identified at risk.

Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial.

Telehealth interventions offer a practical platform to support adolescent and young adult (AYA) cancer survivors' mental health needs after treatment, yet efficacy data are lacking. We evaluated an online, group-based, videoconferencing-delivered cognitive-behavioral therapy (CBT) intervention ('Recapture Life') in a 3-arm randomized-controlled trial comparing Recapture Life with an online peer-support group, and a waitlist control, with the aim of testing its impact on quality of life, emotional distress and healthcare service use. Forty AYAs (Mage = 20.6 years) within 24-months of completing treatment participated, together with 18 support persons. No groupwise impacts were measured immediately after the six-week intervention. However, Recapture Life participants reported using more CBT skills at the six-week follow-up (OR = 5.58, 95% CI = 2.00-15.56, p = 0.001) than peer-support controls. Recapture Life participants reported higher perceived negative impact of cancer, anxiety and depression at 12-month follow-up, compared to peer-support controls. Post-hoc analyses suggested that AYAs who were further from completing cancer treatment responded better to Recapture Life than those who had completed treatment more recently. While online telehealth interventions hold promise, recruitment to this trial was challenging. As the psychological challenges of cancer survivorship are likely to evolve with time, different support models may prove more or less helpful for different sub-groups of AYA survivors at different times.

The Australia and New Zealand Cardio-Oncology Registry: evaluation of chemotherapy-related cardiotoxicity in a national cohort of paediatric cancer patients.

Cancer therapy related cardiac dysfunction (CTRCD) is an area of increasing focus, particularly during the survivorship period, for paediatric, adolescent and adult cancer survivors. With the advent of immunotherapy and targeted therapy, there is a new set of mechanisms from which paediatric and young adult patients with cancer may suffer cardiovascular injury. Furthermore, cardiovascular disease is the leading cause of morbidity and mortality in the survivorship period. The recently established Australian Cardio-Oncology Registry is the largest and only population-based cardiotoxicity database of paediatric and adolescent and young adult oncology patients in the world, and the first paediatric registry that will document cardiotoxicity caused by chemotherapy and novel targeted therapies using a prospective approach. The database is designed for comprehensive data collection and evaluation of the Australian practice in terms of diagnosis and management of CTRCD. Using the Australian Cardio-Oncology Registry critical clinical information will be collected regarding predisposing factors for the development of CTRCD, the rate of subclinical left ventricular dysfunction and transition to overt heart failure, further research into protectant molecules against cardiac dysfunction and aid in the discovery of which genetic variants predispose to CTRCD. A health economic arm of the study will assess the cost/benefit of both the registry and cardio-oncology clinical implementation. Finally, an imaging arm will establish if exercise cardiac magnetic resonance imaging and VO2 max testing is a more sensitive predictor of cardiac reserve in paediatric and adolescent and young adult oncology patients exposed to cardiac toxic therapies.

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.

A framework for youth-friendly genetic counseling.

Young people represent a unique cohort in the context of both healthcare and genetic risk. Genetic counselors have long recognized and documented the challenges of working with young people and their families compared with working with older adults. Challenges for health professionals include engagement with the young person, communication, developmentally appropriate psychosocial assessment, and working with the young person and their family. Likewise, young people also report experiencing challenges within the genetic counseling process. In response to these challenges, and increasing numbers of young people presenting for genetic testing, genetic counselors at the Parkville Familial Cancer Centre (Peter MacCallum Cancer Centre, Australia) formed a collaboration with the ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service. Consisting of a multidisciplinary expert panel who provide care to young people with cancer and their families, the collaboration identified the need to develop an evidence-based framework to ensure the delivery of youth-friendly care and support for young people and their families facing genetic risk. To guide this work, a working party comprising of experts in genetic counseling, adolescent and young adult (AYA) oncology, adolescent health, clinical ethics, and clinical research was established. A literature review was undertaken and based on expert and consumer input and feedback, a consensus-based framework for youth-friendly genetic counseling was developed over several stages. This paper describes the evidence base supporting the development of this framework, the process of development, and the resulting framework of youth-friendly genetic counseling.

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.

An exploratory study of oncology specialists' understanding of the preferences of young people living with cancer.

Awareness about the specific needs of Adolescents and Young Adults (AYA) aged 15-25 with a diagnosis of cancer has grown rapidly over the past 10 years. To improve outcomes for these patients it is essential that services are developed within youth friendly models. This requires awareness by healthcare professionals of unique biological, genetic, epidemiological, psychological, social, and cultural factors that affect the AYA population. This study sought to explore oncology professionals understanding of the healthcare preferences of AYAs with cancer receiving treatment at a specialist cancer centre. Participants comprised 60 professionals in allied health (n = 15); nursing (n = 32); oncology (n = 6) and those from the Victorian AYA Cancer Service (n = 7). A questionnaire, developed from pilot work, collected demographic information, investigated professionals' top five perceived issues for AYAs, and examined perceptions in the areas of communication; information provision; environment; services; education, employment and social life, fertility and sexuality; support and survivorship. Results illustrate that, with a strong focus on survival and physical wellbeing, professionals significantly underestimate the breadth of AYA psychosocial concerns. The findings further indicate: that young people report different healthcare preferences compared to those reported by professionals; there are varying levels of professional skill, experience and confidence; there are significant workforce development and support needs for professionals; and AYA models of care require rigorous evaluation to ensure the improvement of outcomes for young people living with cancer.

Caring for depressed elderly in the emergency department: establishing links between sub-acute, primary, and community care.

Elderly patients presenting to St. Vincent's Health Emergency Department (ED) constitute approximately one third of presentations. A significant proportion of these involve preexisting conditions including depression that, within elderly patients, is associated with social isolation, physical and mental health problems, and barriers to accessing community services. It is also often overlooked as a clinical diagnosis among the elderly. This study aimed to assess the efficacy of a brief depression screening tool and examine the change over time in quality of life and social factors for elderly patients who present to ED. Patients aged 65 years and over were screened for depression using a short form of the Geriatric Depression Scale (GDS-15). Participants were randomized into control (usual care) and intervention (an assertive outreach community management program) groups and assessed in relation to depression, quality of life, and social support/functioning at recruitment and 6 weeks post discharge. Approximately one in four participants experienced mild to moderate depression that was related to medical factors and associated reduced mobility. This study suggests that an assertive outreach program, with the inclusion of community intervention and links to social supports and services, could improve the management of depression in the elderly and associated health outcomes.