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Background: 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., Objective: 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., Methods: 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., Results: 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., Conclusions: 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., Implications for Practice: 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., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

Objective: We conducted a UK-wide survey to identify the top 10 research questions for young people's cancer. We conducted secondary analysis of questions submitted, which were 'out-of-scope' of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer., Design: James Lind Alliance Priority Setting Partnership., Participants: Young people aged 13-24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population., Methods: Eight hundred and fifty-five potential research questions were submitted, and 326 were classified as 'out-of-scope'. These questions, along with 49 'free-text' comments, were analysed using thematic analysis., Results: The 375 out-of-scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long-term effects and aftercare support; family support; financial impact; end-of life care; and research methods and current research., Conclusions: The need to tailor services, information and communication is a striking thread evidenced across the 'out-of-scope' questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes., Patient/public Contributions: Patients and carers were equal stakeholders throughout., (© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Teenagers and young adults (TYAs) with cancer are known to suffer poor sleep quality and sleep disturbances; understanding the level of burden is essential to improving patient outcomes via supportive care interventions., Objectives: To compare sleep quality and the prevalence of sleep disturbances among TYA cancer patients, TYA survivors, and general population TYAs with no history of cancer., Methods: Teenager and young adult patients receiving active cancer treatment (n = 70), TYA cancer survivors (n = 151), and general population TYAs (n = 324) aged between 13 and 24 years completed the Pittsburgh Sleep Quality Index. Analyses of covariance were used to investigate potential group differences. Age at survey diagnosis, gender, ethnicity, and health status were included as covariates., Results: 84.29% of TYA patients, 62.91% of TYA cancer survivors, and 65.12% of general population TYAs reported Pittsburgh Sleep Quality Index scores greater than 5, suggesting clinically significant sleep disorders. Teenager and young adult patients reported significantly poorer global sleep quality compared with TYA survivors (mean difference, 0.99; 95% confidence interval, 0.03-1.96; P = .044) and general population TYAs (mean difference, 1.34; 95% confidence interval, 0.26-2.41; P = .009). Teenager and young adult patients and survivors reported significantly poorer sleep latency (P = .003 for TYA patients, P = .035 for TYA survivors off treatment) and habitual sleep efficiency (P < .001 for TYA patients, P = .014 for TYA survivors) than general population controls., Conclusions: The significant differences observed suggest young people with cancer, particularly those on treatment, may benefit from specialized sleep interventions., Implications for Practice: Efforts to ensure health professionals have the knowledge and skills to provide advice about sleep to young people with cancer are needed.

Young people with cancer are at increased risk of psychological difficulty; yet there is little research on their experiences of low mood or depressive symptoms to help inform treatment interventions. This qualitative study explored experiences and opinions of low mood or depression in young people with cancer, how their mood related to developmental challenges, strategies used to cope, and how services could improve support. Nineteen young people diagnosed and treated for cancer completed semistructured interviews. Transcripts were thematically analyzed using the framework approach, and analysis produced eight themes, organized into three domains: "A Harder Time of Life," "Interpersonal Impact of Cancer," and "Learning to Understand and Describe Low Mood," Participants interviewed experienced low mood during cancer and predominantly felt "low mood" was a helpful term to describe their emotions. There were similarities and variations in their reported mood compared with clinical depression. The developmental challenges of being a young person with cancer negatively affected their mood. Participants used a variety of different coping strategies to manage these challenges. Young people were clear that they would like others to help them understand negative emotions experienced through cancer are normal to feel and support for low mood to be accessible and available.

Objectives: To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population., Design: James Lind Alliance Priority Setting Partnership., Setting: UK health service and community., Methods: A steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop., Participants: Young people aged 13-24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population., Results: Two hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of 'out of scope' questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care., Conclusions: We have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: Young people with cancer are at increased risk of depression, yet evidence-based psychological interventions that are tailored to the specific needs of young people with cancer are scarce, and depression in this group may be particularly challenging to recognize and treat. The aims of this study were to (1) explore the views of health professionals in recognizing and treating low mood in young people with cancer and (2) identify the key components of an effective online treatment package for depression in this population., Methods: Eighteen NHS health professionals with a range of professional backgrounds working directly with young people with cancer were interviewed using a semi-structured interview schedule. Responses were analyzed using thematic analysis., Results: Five themes emerged: (1) one size doesn't fit all-the nature of depression is complex and varied, and symptoms fluctuate greatly in relation to physical health; (2) distress is completely understandable-it is important not to pathologize a normal reaction; (3) a stepping stone intervention-online interventions may promote engagement with face-to-face therapy; (4) connecting with others-the intervention should promote sharing experiences with others to reduce isolation; and (5) ownership and empowerment-lack of independence may be a cause of distress, and young people should have control of the intervention., Conclusion: The nature of depression in young people with cancer is complex and multifaceted. Online guided self-help may be useful when added as a component or first step of a treatment package including face-to-face talking therapies.

Objectives: To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care., Design: We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care., Setting: Three cancer centres and associated palliative care services across England., Participants: We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops., Results: Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns., Conclusions: Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Skin cancers are a common form of second malignant neoplasm among teenage and young adult cancer survivors (TYACS). The Children's Oncology Group specifies that TYACS should adhere to safe sun practices and be screened for skin cancer annually. Cross-sectional self-report data collected by our group indicate over a third of TYACS (n = 229; mean age: 19.8 years) intentionally sunbathe, with many reporting sunburn. TYACS sunbathing, sunburn, and sunbed use are similar to the general population (P > 0.05). These data suggest TYACS require intervention to limit sun exposure and improve their sun safety habits., (© 2018 Wiley Periodicals, Inc.)

Purpose: The diagnosis of cancer is often prolonged in teenagers and young adults (TYA). There may be lessons in improving this from international comparisons. However, international studies are complex and so we conducted a pilot study to examine the key barriers to large-scale research in this field., Methods: We provided translated questionnaires covering key aspects of presentation and clinical management within 60 days of a confirmed cancer diagnosis, to patients 13-29 years of age inclusive, to their primary care physicians and to the cancer specialists managing their cancer. We conducted descriptive analyses of the data and also the process of study implementation., Results: For our pilot, collecting triangulated data was feasible, but varying regulatory requirements and professional willingness to contribute data were key barriers. The time of data collection and the method for collecting symptom reports were important for timely and accurate data synthesis. Patients reported more symptoms than professionals recorded. We observed substantial variation in pathways to cancer diagnosis to explore definitively in future studies., Conclusion: Focused research upon the mechanisms underpinning complex cancer pathways, and focusing that research upon specific cancer types within TYA may be the next key areas of study.

Background: 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., Objective: 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., Methods: 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., Results: 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., Conclusion: Young people with cancer want age-appropriate lifestyle information on a range of topics delivered in multiple formats at various time points., Implications for Practice: 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.

Purpose: Teenage and young adult (TYA) cancer survivors experience a range of health-related problems during and beyond the active treatment period. This study examined associations between fatigue, sleep quality, and health-related quality of life (HRQOL) among TYA survivors., Methods: Self-reported data on sleep quality (Pittsburgh Sleep Quality Index), fatigue (Functional Assessment of Chronic Illness Therapy Fatigue), and HRQOL (EuroQoL-5) were gathered from United Kingdom TYA survivors between 13 and 24 years of age. TYA survivors were stratified into those on (n = 67) and off (n = 135) treatment. Linear regression analyses were used with HRQOL as the dependent variable to investigate potential associations. Fatigue and sleep were entered separately and together in the same model. Age at survey and diagnosis, gender, and ethnicity were included as covariates., Results: 85.07% of TYAs on and 62.69% of TYAs off treatment had sleep quality scores suggestive of clinically significant sleep disorders. 56.72% of TYAs on and 26.67% of TYAs off treatment reported clinically significant levels of fatigue. Strong independent associations between sleep (B = 0.05, 95% confidence intervals [CI] = 0.03-0.07, p < 0.001), fatigue (B = 0.02, 95% CI = 0.01-0.03, p < 0.001), and HRQOL were observed among TYA survivors on treatment. TYAs off treatment showed moderate to strong associations between sleep (B = 0.04, 95% CI = 0.02-0.05, p < 0.001) and fatigue (B = 0.02, 95% CI = 0.01-0.02, p < 0.001), and HRQOL, when examined separately. Sleep was not independently associated with HRQOL among TYAs off treatment (B = 0.01, 95% CI = -0.01 to 0.02, p = 0.296)., Conclusion: The significant associations reported suggest that sleep quality and fatigue are potential modifiable factors associated with HRQOL. Further research is warranted to understand the direction of associations.

Context: This review summarizes the current randomized controlled trials literature on psychological and physical outcomes of psychosocial interventions in pediatric oncology., Objectives: The objective of this study was to evaluate the effectiveness and impact of psychosocial interventions in children with cancer., Methods: A search of the literature resulted in a total of 12 randomized clinical trials and these have evaluated psychosocial interventions in children younger than 18 years with current and previous diagnoses of cancer. Outcome measures were both psychological (e.g., symptoms of anxiety, depression, quality of life, and self-esteem) and physical (e.g., cancer symptoms, treatment adherence, and pain). Interventions identified included cognitive behavioral therapy (CBT; n = 4), joint CBT and physical exercise therapy (n = 1), family therapy (n = 2), therapeutic music video (n = 2), self-coping strategies (n = 1), a wish fulfillment intervention (n = 1), and joint family therapy and CBT (n = 1)., Results: Nine studies reported statistically significant improvements on psychological outcomes. These findings suggest that psychosocial interventions are effective at reducing anxiety and depressive symptoms as well as improving quality of life. Additionally, six studies found psychosocial interventions to have a positive impact on physical symptoms and well-being, including a reduction in procedural pain and symptom distress., Conclusion: These findings suggest that mental health needs in pediatric oncology patients can and should be addressed, potentially which will lead to better mental and physical health outcomes., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: Digital technology has the potential to support teenagers and young adults (TYAs) with cancer from the onset of their disease into survivorship. We aimed to establish (1) the current pattern of use of TYA digital technologies within our service-user population, and (2) their preferences regarding digital information and support within the service., Methods: A cross-sectional survey was administered as a paper and online self-completed questionnaire to TYAs aged 13-24 accessing outpatient, inpatient, and day care cancer services at a regional specialist centre over a 4-week period., Results: One hundred two TYAs completed the survey (55.7% male; 39.8% female; 83.3% paper; 16.7% online; mean age 18.5 years [SD = 3.51]). Of the TYAs, 41.6% rated the importance of digital communication as "essential" to their lives. Half (51.0%) kept in contact with other patients they had met during treatment, and 12.0% contacted patients they had not met in person. Respondents wanted to receive clinical information online (66.3%) and use online chat rooms (54.3%). Future online services desired included virtual online groups (54.3%), online counselling or psychological support (43.5%), and receiving (66.3%) and sharing (48.9%) clinical information online., Conclusions: Young people with cancer are digital natives. A significant subgroup expressed a desire for digital resources from oncology services, though existing resources are also highly valued. Digital resources have potential to improve patient experience and engagement., Implications for Cancer Survivors: There is considerable scope to develop digital resources with which TYAs can receive information and connect with both professionals and fellow patients, following diagnosis, through treatment and survivorship.

Purpose: 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., Methods: 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., Results: 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., Conclusions: 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.

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.

Background: Although relatively rare, cancer in teenagers and young adults (TYA) is the most common disease-related cause of death and makes a major contribution to years of life lost in this age group. There is a growing awareness of the distinctive needs of this age group and drive for greater understanding of how outcomes can be improved. We present here the latest TYA survival trends data for the United Kingdom (UK)., Methods: Using national cancer registry data, we calculated five-year relative survival for all 15-24 year olds diagnosed with cancer or a borderline/benign CNS tumour in the UK during the periods 1992-1996, 1997-2001 and 2002-2006. We analysed trends in survival for all cancers combined and for eighteen specified groups that together represent the majority of TYA cancers. We compared our data with published data for Europe, North America and Australia., Results: Five-year survival for all cancers combined increased from 75.5% in 1992-1996 to 82.2% in 2002-2006 (P<0.001). Statistically significant improvements were seen for all disease groups except osteosarcoma, rhabdomyosarcoma, non-gonadal and ovarian germ cell tumours and ovarian and thyroid carcinomas. During the earliest time period, females had significantly better survival than males for five of the twelve non-gender-specific disease groups. By the latest period, only melanomas and non-rhabdomyosarcoma soft tissue sarcomas had differential survival by gender. Survival in the UK for the most recent period was generally similar to other comparable countries., Conclusion: Five-year survival has improved considerably in the UK for most cancer types. For some disease groups, there has been little progress, either because survival already approaches 100% (e.g. thyroid carcinomas) or, more worryingly for some cancers with poor outcomes, because they remain resistant to existing therapy (e.g. rhabdomyosarcoma). In addition, for a number of specific cancer types and for cancer as a whole males continue to have worse outcomes than females., (Copyright © 2015 The Authors. Published by Elsevier Ltd.. All rights reserved.)

There is an ever-increasing number of cancer survivors entering adult life. Health-care professionals in this field must ensure that there is seamless transition through paediatric, teenage and young adult and adult services such that an individual patient is able to achieve his/her maximum potential and enjoy a quality, 'cancer-free' future.