Teenage And Young Adult Cancer Research Articles

Perspectives of healthcare professionals on the use of immersive virtual reality in teenage and young adult oncology: a qualitative interview study

BackgroundApplications of Virtual Reality (VR) in healthcare continue to grow at a rapid pace, yet the challenges and opportunities associated with VR from the perspective of clinicians and healthcare staff remain underexplored, particularly in the context of Teenage and Young Adult (TYA) oncology. This study aims to bridge this knowledge gap by interviewing clinicians and staff regarding the use of VR in TYA cancer care.MethodFourteen semi-structured qualitative interviews were conducted with a diverse range of healthcare professionals working in TYA oncology within the United Kingdom including oncologists, hematologists, clinical nurse specialists, clinical psychologists, radiographers, play specialists, clinical social workers and youth support coordinators. Data were analysed thematically with three themes and ten sub-themes developed.ResultsThe findings reveal that TYA healthcare professionals are optimistic and enthusiastic about the potential of using VR to enhance cancer care for teenagers and young adults. However, they also expressed notable concerns related to the practical implementation of VR in clinical settings. These concerns included infection and safety risks, privacy and security concerns, cost implications, storage requirements and staff burden. Clinicians and staff proposed valuable applications for VR in TYA oncology specifically in patient distraction, physiotherapy, procedure preparation, and the delivery of psychotherapy, including acceptance and commitment therapy.ConclusionsThis research has demonstrated that despite an enthusiasm to adopt VR in TYA oncology there are still many challenges, both practical and ethical, that must be addressed to enable the successful implementation of VR in hospitals within the UK. Further research into applications of VR for TYA oncology is warranted, particularly in areas of psychology, physiotherapy, and procedure preparation.

Health Professionals' Views on Lifestyle Advice Delivery to Teenage and Young Adult Cancer Patients: A Qualitative Study.

Many health professionals working with teenage and young adult cancer patients (TYA-HPs) do not provide advice on physical activity, dietary intake, smoking cessation, and alcohol consumption as part of routine cancer care. The aim of this study was to understand TYA-HPs' perspectives on the provision of health behavior advice and preferences on an intervention to help develop their health promotion skills. In-depth, semistructured interviews were conducted with 26 TYA-HPs (12 nurses, 8 clinicians, and 6 allied health professionals) whose average time working with teenage and young adult (TYA) cancer patients was 8 years. Each interview followed the same semistructured guide, which was based upon constructs of the COM-B model of behavior change (capability, physical opportunity, social opportunity, reflective motivation, and automatic motivation), transcribed verbatim, and analyzed using the Framework analysis. Overall, TYA-HPs recognized the value and importance of promoting health behaviors but felt that their capability to provide health behavior advice was limited by the availability of, and access to, good-quality evidence linking health behavior to cancer outcomes. The TYA-HPs expressed confusion over professional responsibility to provide choices. The TYA-HPs recognize health behavior promotion to be a core part of TYA cancer care but feel ill-equipped to provide such advice to patients. Mapped to constructs of the COM-B model of behavior, these findings suggest that TYA-HPs would benefit from cross-multidisciplinary team support for improved access to TYA-specific resources covering key health behaviors and skills-based training on delivering lifestyle advice.

The health behaviour status of teenage and young adult cancer patients and survivors in the United Kingdom

PurposeThe primary aim of this study was to investigate the health behaviour status of teenage and young adult (TYA) cancer patients and survivors; the secondary aim was to determine if TYA cancer patients and survivors health behaviour differs to general population controls.MethodsTwo hundred sixty-seven young people with cancer (n =83 cancer patients receiving active treatment: n =174 cancer survivors, 57.1% >1 year since treatment completion) and 321 controls completed a health and lifestyle questionnaire which included validated measures of physical activity (PA) (Godin Leisure Time Exercise Questionnaire), diet (Dietary Instrument for Nutrition Education, DINE), smoking status, and alcohol consumption (AUDIT-C).ResultsGeneral population controls and cancer survivors were more likely to meet current (PA) recommendations (p <0.001) than TYA cancer patients undergoing treatment (54.8% vs 52.3% vs 30.1%, respectively). Less than 40% of young people with cancer and controls met fat intake, sugar intake, fibre intake or current fruit and vegetable recommendations. TYA cancer survivors were more likely to report binge drinking than controls (OR=3.26, 95% CI 2.12–5.02, p <0.001). Very few young people with in the study were current smokers. The majority of TYA cancer patients and survivors reported a desire to make positive changes to their health behaviour.ConclusionConsideration should be given to whether existing health behaviour change interventions which have demonstrated positive effects among the general TYA population could be adapted for young people with cancer.

A retrospective study of mortality among teenage and young adult (TYA) cancer patients in India.

e13110 Background: TYAs are a unique group struggling with cancer but also with personal transitions of life. Outcomes of cancer in this group are poorly reported as most reports either address pediatric or adult patients. We evaluated mortality among TYA cancer retrospectively to better understand their journey with cancer. Methods: Teenage and Young adults (15 – 29 years) , from four institutes were included in the retrospective study for the year 2017. Eight hundred and seven of 1310 patients with cancer diagnoses or caregivers were telephonically contacted, in a predefined questionnaire including questions on mortality. Results: Three hundred seventy-two (46.1%) of 807 TYA cancer patients died . Distance and time travel to hospital, demography and alternative medicine were a significant factor for increased mortality. Gender and the age epochs within the TYA group did not determine mortality. One hundred and sixty-two patients died while on treatment whereas 136 patients died while not on any treatment. Seventy-four patients died at disease relapse. Those who died of cancer survived for a median of 180 days (5 - 2340 days). One hundred and four patients (12.9%) died within 90 days of diagnosis.There were significantly more deaths ( 30.4%) in patients who abandoned treatment, than among patients who went on therapy ( 18.6%). ( p 0.0001). Conclusions: Mortality among TYAs with cancer in India is high and is determined largely by factors like demography and logistics.

423O - Study of psycho-social profile of caregivers in teenage and young adult (TYA) cancer patients: Indian perspective

Background: Teenage and Young Adult (TYA) cancer patients bring to cancer experience several unique psychosocial circumstances. Along with illness related stressors, TYAs face rapid social, biological, and cognitive changes, rendering them reliant on their caregivers. The purpose of this study is to determine the demographic, psycho-social profile and impact of caregiving in primary caregivers of Teenage and Young Adult Cancer patients, exploring their personal narratives of the cancer experience looking back on the entire experience from diagnosis, through treatment, and beyond at a rural cancer centre in India. Methods: Our study examines responses of 200 TYA cancer caregivers(TCGs) to pretested structured proforma including questionnaire on various aspects of care-giving between September 2016 and April 2018. Respondents must have self-identified as an unpaid primary TCG either currently or at some point in twelve months prior to study period. Results: TCGs have diverse backgrounds and characteristics. Majority are women(66%), 78% in age group 18-49yrs and most(58%) have less than a high school certificate. Majority(60%) from rural area, 13% required change in residence and 64% from lower/upper lower socioeconomic status. On average, TCGs help their recipient with 5 out of 9 activities of daily living(ADL) and 82% of TCGs required help with key activities. Health status reported as fair/poor by 36%. On average, 32% reported anxiety levels, whereas depression, fatigue and sleep disturbances reported by 25%,37% and 34% respectively, each of 3 on a 5 point scale. 22% reported as not satisfied with their social activity. These factors led to delay in diagnosis in 8%, delay in treatment initiation in 10%, non-adherence to treatment in 10% and 6% abandonment rate. Conclusions: To date, there is a dearth of research examining effects of providing care for a TYA with cancer in developing countries, and India in particular, where family members are more important resource for healthcare. TCGs data are vital for development and implementation of future programs to improve caregiver and patient health throughout the care trajectory. Legal entity responsible for the study: Department of Medical Oncology, Sri Aurobindo Institute of Medical Sciences. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.

Lifestyle advice provision to teenage and young adult cancer patients: the perspective of health professionals in the UK.

Health professionals are an important source of information for teenage and young adult (TYA) cancer patients. However, little is known about health professionals' provision of lifestyle advice to young people with cancer who are in their care. An online survey was distributed to health professionals within the UK who identified themselves as working with TYA cancer patients. Health professional awareness of lifestyle guidance, provision of lifestyle advice to young people and views on lifestyle information format and delivery were explored. Ninety-five health professionals (44% nurses; 28% allied health professionals; 17% physicians) completed the survey. The majority (72%) of respondents were aware of some lifestyle guidance for cancer patients. However, less than half of TYA health professionals (46%) were able to successfully recall the source of the guidelines and less than a third reported proving specific advice to the majority of their patients on weight management, smoking, alcohol consumption and sun safety. Many health professionals (38%) felt that they were not the right person to provide advice and cited lack of resources as a key barrier to advice provision. The majority (95%) reported being interested in a resource containing relevant lifestyle information that could be given to young people with cancer. TYA health professionals' awareness of lifestyle guidance and provision of advice regarding health behaviour is sub-optimal. Clear and comprehensive guidance written specifically for TYA health professionals could overcome the reported barriers and improve professionals' confidence in addressing and providing advice on lifestyle to young people with cancer.

The Lifestyle Information and Intervention Preferences of Teenage and Young Adult Cancer Survivors: A Qualitative Study.

Little is currently known about how best to promote healthy lifestyle choices among teenage and young adult (TYA) cancer survivors. Such data gathered from a patient-centered perspective are instrumental for the development of health behavior change interventions for young people with cancer. This study aimed to explore the lifestyle information needs of TYA cancer survivors and their preferences regarding lifestyle information and intervention delivery. Lifestyle behaviors of interest were physical activity, diet, smoking, alcohol consumption, and sun safety. A total of 13 TYA cancer survivors (mean age, 22.9 years) participated in 10 individual interviews and 1 focus group (n = 3). Each interview and focus group followed the same semistructured interview guide, which was designed to explore young peoples' motivation behind leading a healthy lifestyle, their past experience of searching for lifestyle information, and their preferences relating to lifestyle information delivery. Three core themes emerged: cancer as a catalyst to lifestyle behavior change, factors influencing health behavior change, and health behavior information preferences. Social support emerged as facilitator of both health behavior change and self-efficacy. Young people with cancer want age-appropriate lifestyle information on a range of topics delivered in multiple formats at various time points. Health professionals working with TYA cancer survivors should address young peoples' lifestyle information needs throughout the cancer care pathway and support young people to foster the confidence to make, and sustain, positive lifestyle behavior changes.

Education, employment and marriage in long-term survivors of teenage and young adult cancer compared with healthy controls.

Teenage and young adult (TYA) cancer patients are faced with the diagnosis during a challenging period of psychosocial development that may affect social outcomes in the long term. Therefore, we aimed to: (1) determine differences in social outcomes between long-term TYA cancer survivors and healthy controls and (2) identify factors associated with adverse social outcomes. We sent a questionnaire to TYA cancer survivors (aged 16-25 years at diagnosis, 5 years after diagnosis) registered in the Cancer Registry Zurich and Zug. Information on controls was obtained from the Swiss Health Survey 2012. We assessed educational achievement, employment status, marital status and life partnership (survivors only), and compared these outcomes between survivors and controls. We used logistic regression to identify sociodemographic and cancer-related factors associated with social outcomes. We included 160 TYA cancer survivors and 999 controls. Educational achievement of survivors differed significantly from controls (p = 0.012): more survivors than controls reported upper secondary education (33 vs 27%) and fewer survivors reported university education (12 vs 21%). No significant differences were found for employment (p = 0.515) and marital status (p = 0.357). The majority of survivors (91%) and controls (90%) were employed, and 37% of survivors were married, compared with 41% of controls. There were no cancer-related factors associated with having only basic education. Unemployment was associated with younger age at diagnosis (odds ratio [OR] 5.3, 95% confidence interval [CI] 1.3-30.8) and self-reported late effects (OR 4.7, 95% CI 1.3-19.5). Survivors of younger age at diagnosis were more likely not to be married (OR 2.7, 95% CI 1.3-5.7) and not to have a life partner (OR 2.3, 95% CI 1.0-5.2). Our findings indicate that TYA cancer survivors completed applied higher education rather than a university education. Future studies including larger samples of TYA cancer survivors are needed to validate our findings and to explore the reasons for and satisfaction with the observed educational pathway.

Health Behavior Change Interventions for Teenage and Young Adult Cancer Survivors: A Systematic Review.

It is important that teenage and young adult (TYA) cancer survivors adopt a healthy lifestyle, since health vulnerabilities associated with their diagnosis and treatment may be exacerbated by poor health behaviors. This review aims to synthesize the current literature on health behavior change interventions created specifically for TYA-aged cancer survivors. MEDLINE, EMBASE, PsycINFO, and CINAHL databases were searched for studies investigating interventions targeting one or more health behaviors, including: physical activity, diet, smoking cessation, and alcohol consumption. Studies were eligible for review if the study population were defined as TYA cancer survivors and the mean age of the sample was younger than 30 years of age. Twelve studies were identified, of which nine were randomized controlled trials. Physical activity was the most commonly targeted health behavior. Six of the 12 interventions included within this review were successful in changing health behavior. Due to the heterogeneity of intervention characteristics, the relationship between intervention efficacy or outcome and intervention content, delivery mode, or theoretical framework was not discernible. Nevertheless, trends emerged relating to the delivery and content of health behavior interventions designed specifically for TYA cancer survivors. More research is required to identify the most effective means of promoting health behavior change among the TYA cancer survivor population. Specifically, future research should focus on providing evidence of the efficiency and feasibility of interventions that use online technologies to facilitate remote intervention delivery and peer support.

G405 Defining healthcare professional competence for working with teenagers and young adults with cancer – a brightlight study

Aims Teenage and young adult (TYA) medicine is emerging as a distinct speciality, acknowledging the core tasks required to enable a young person to transition successfully to adulthood. As healthcare education is subdivided into adult or child focused-training, a framework is needed to reflect the specific competencies required to care for this population. The aim was to provide international consensus on the competencies required by healthcare professionals to provide specialist cancer care for TYA. Methods A modified, international e-Delphi survey was conducted over 2 rounds. Experts were defined as professionals having worked in TYA cancer care for more than 12 months. They were identified through publications and invitations via professional organisations. The content of round 1 was informed by UK pilot work and a workshop undertaken by the professional organisation, TYAC. There were 87 closed-ended questions with responses on a 9-point Likert scale and further open-ended responses to identify other skills, knowledge and attitudes. Round 2 contained only items with no consensus in round 1 and suggestions of additional items of competency. Consensus was defined as a median score ranging from 7–9. Results A total of 179 registered to be members of the expert panel, of which valid responses were available for 158 (88%) in round 1 and 136 (86%) for round 2. The majority of participants were nurses (35%) or doctors (39%) from Europe (55%) or North America (35%). All 87 items in round 1 reached consensus with an additional 15 items identified for round 2. The most important skill was reported as “being able to identify the impact of disease on young people’s life”; the most important area of knowledge was “know about side-effects of treatment and how this might be different to those experienced by children or older adults”; “ability to talk about difficult issues” was the most important communication skill and honesty the highest rated attitude. Conclusions The process has been successful in identifying a high degree of consensus for competencies and skills to be used of training for professionals working with TYA.

When and Why Do Teenage and Young Adult Oncology Patients Die Early in the Cancer Pathway?

ABSTRACT Aim: Teenage and young adult (TYA) oncology patients fall between adult and paediatric services. Recent data has revealed early deaths in TYAs. Amongst adults, early deaths are a proxy measure for late stage presentation or treatment delay, whereas amongst children early deaths are often treatment-related. In TYA patients the cause of early deaths remains unknown. We aim to examine early deaths and whether they are related to anti-cancer therapy. Methods: We analysed population based Northern and Yorkshire Cancer Registry and Information Service data of all patients aged 13-24 years inclusive at cancer diagnosis (n = 1137), over 12 years to 31/12/2011. We used morphological classification, descriptive statistics, cox regression models and death certificate review to examine patterns and causes of death, within one year of diagnosis. Results: Of 1137 TYAs, 95 died within 12 months of diagnosis (45% of all deaths). Most of these deaths were between 90 and 365 days. Only patients with leukaemias, non-Hodgkin's lymphoma, central nervous system tumours and soft tissue sarcomas (STS) died within 30 days. Highest risk of mortality within one year was in acute lymphoblastic leukaemia (HR 1.86, p = 0.039), STS (HR 2.38, p = 0.004) and gastric carcinoma (HR 10.86, p Conclusions: The highest incidence of deaths in TYA cancer patients is in the first year after diagnosis. One year mortality varies according to cancer diagnosis. Very few deaths are attributed to anti-cancer therapy. Reducing one year death rate, in STS and AML particularly, may contribute to improving survival in TYA cancer patients. Disclosure: All authors have declared no conflicts of interest.

Young adult cancer services in the UK: the journey to a national network

The past decade has seen the development of a network of specialist teenage and young adult cancer centres across the UK. These provide expertise in treatment across the spectrum of malignancies that occur in young adults, supported by multi-disciplinary teams that are able to provide the psycho-social support so necessary for this age group, and in a hospital environment that encourages social interaction while delivering expert medical care. The development of teenage and young adult (TYA) cancer as a specialty gained establishment backing in 2005, through NICE guidance which mandated that all 16- to 24-year-olds should be referred to specialist TYA cancer centres. The foundation of this achievement was set by a handful of committed individuals and the Teenage Cancer Trust, a charity that has acted as patient advocate and political pressure group, and that has brought to public attention the need for change while providing support for specialist staff and hospitals.

"Your Place or Mine?" Priorities for a Specialist Teenage and Young Adult (TYA) Cancer Unit: Disparity Between TYA and Professional Perceptions.

To identify key components of a specialist teenager and young adult (TYA) cancer unit from the perspective of young people and health professionals. A facilitated workshop was held in England at which participants prioritized 15 core features of a specialist cancer unit identified in a literature review. Themes were transferred onto cards and organized using a pyramid. Notes were made of the discussion and how decisions were reached. The exercise was repeated in a survey at a patient conference. Data were analyzed by weighting the ranked position and by content analysis. Eleven young people and 22 health professionals attended the workshops, and 64 young people completed the survey. Young people's top three priorities were a dedicated unit, contact with peers, and provision for partners/parents to live in the unit with them. Health professionals prioritized best chance of survival and best quality of life, access to expertise, access to computers/Internet, and age-appropriate equipment. Priorities varied across and within healthcare professionals and young people, and were dependent on viewpoint and personal experience. This is an essential first step toward a fuller description of the benefit of specialist TYA cancer services and highlights the importance of consulting users in service development.

69 SIOP-Europe Award Teenage and Young Adult Cancer (TYA) “The Forgotten Tribe”

To identify treatment-related toxicities that are either more frequent or more severe in the adolescent and young adult (AYA) oncology population. To explore differences in drug pharmacology and patient physiology that contribute to toxicities in the AYA population and to describe the impact of treatment-related toxicities on outcomes for AYA patients.A PubMed search was undertaken using the key words Adolescent Young Adult Oncology, AYA, toxicity, bone marrow transplant, late effects, and chemotherapy. Additional toxicity information was also obtained from recent publications from cancer cooperative groups treating AYA patients.AYA patients often experience more severe toxicities than children when treated with identical chemotherapy regimens, which can interfere with successful administration of planned treatment, as well as have profound effects on quality of life. AYA patients with cancer face the dual challenge of disease biology associated with inferior response to treatment, thus necessitating treatment intensification, while at the same time suffering higher rates of specific toxicities such as vincristine-induced neuropathy, osteonecrosis, and treatment-related mortality caused by infection.AYA patients are at a higher risk for toxicities from regimens that may be tolerated by younger patients. Staff should be aware of toxicities facing this population so that appropriate supportive care measures can be utilized. Future research on the pharmacology of drugs in adolescence, hormonal effects on drug-metabolizing enzymes, cumulative exposure to different drugs in combination, and risk and severity of specific toxicities will be critical to improving the treatment of AYA patients.