Understanding the patient and family experience of nutrition and dietetic support during childhood cancer treatment.

PURPOSE: This study aimed to understand the experience of families caring for a child with cancer in New Zealand (NZ) who received nutrition and dietetic support during cancer treatment and their preferences for the delivery, format, and timing of nutrition information. METHODS: Childhood cancer patients and their families (N = 21) participated in a mixed-methods study at a specialist paediatric oncology centre in Auckland, NZ. Before the semi-structured interview, participants completed a questionnaire capturing demographic, disease, and treatment characteristics of their child, their nutrition concerns, and their information needs. Quantitative data were described, and qualitative thematic analysis of the semi-structured interviews was performed using NVivo data analysis software. RESULTS: Eighty-six percent of participants indicated they had concerns about their child's nutrition during treatment. The most common concerns were anorexia, vomiting, and weight loss. While many were happy with the quality of the nutrition support received, one-third of the patients wanted more support. Four key themes emerged from the interviews: (1) patients experience significant and distressing nutrition challenges; (2) patients and families have mixed perceptions of EN; (3) there are gaps in the current nutrition support system for inpatients; and (4) a desire for more accessible nutrition support. CONCLUSION: Childhood cancer patients and families experience significant and distressing nutrition challenges during treatment. Standardising information given to patients and their families may optimise nutrition support for paediatric oncology patients and reduce the discordance between families and health professionals. Future implementation of a nutrition decision aid in this population is warranted.

Nutritional assessment and dietetic resource for children and young people with cancer in the United Kingdom.

BACKGROUND: Both under- and overnutrition may have adverse impact on outcome of cancer in children and teenagers/young adults (CTYA). Previous studies confirm that screening for nutritional risk and detection of nutritional abnormality is inconsistently undertaken in practice. METHODS: We undertook a survey of dietetic resource and nutritional assessment in CTYA principal treatment centres (PTC) in the United Kingdom. Responses were received from 95% children's and 69% TYA PTC. RESULTS: Only 13/18 (72%) children's PTC, and one of 11 (9%) TYA PTC, met national standards for dietetic resource; one of 18 (6%) paediatric and six of 11(54%) TYA PTC had no such resource. While resources were greater in larger paediatric PTC, who were also most likely to undertake stem cell transplantation, resources in TYA PTC were too low to assess relationship to centre size. Most centres focused resources on inpatient care and <50% considered staffing adequate; 82% used nutritional screening tools but without consistency in the tool used. Weight and height were the principal method for assessment, but with inconsistency in the frequency of measurement and use in different clinical settings. Measures derived from weight and height, including body mass index (BMI), were inconsistently utilised. The use of arm anthropometry was rare despite evidence that use increases recognition of undernutrition. Detailed nutritional assessment was infrequently attempted. CONCLUSION: Barriers to adequate nutritional assessment and treatment for all patients include resource limitations (particularly TYA), training for staff, and uncertainty about detailed assessment of nutritional status. There is a need to harmonise screening and assessment of nutritional status in CTYA with cancer.

Maintaining physical activity following myocardial infarction: a qualitative study.

BACKGROUND: Outcomes following myocardial infarction (MI) are improved by uptake and maintenance of physical activity (PA), but little is understood regarding patients experience of maintaining an active lifestyle once immediate support, such as cardiac-rehabilitation (CR), has ended. AIM: The purpose of this study was to investigate MI survivors' attitude and appraisal towards PA and the perceived barriers, motivators and facilitators for maintaining PA long-term. METHODS: Semi-structured interviews were carried out with 18 adults (mean age 60.5, range 37-73 years) from England and Scotland, who were a minimum of 5 months post-MI (mean 29 months, range 5-122 months). There were comparatively more male participants (n = 13, 72 %) than female (n = 5, 28 %). Overall 12 (67 %) participants had attended CR. The interviews were transcribed verbatim and thematic analysis was performed using qualitative data analysis software NVivo. RESULTS: Data analysis indicated that the following four core themes influenced MI survivors' behaviour and attitude towards PA: (1) MI as a teachable moment for behaviour change, (2) affective response to MI: enjoyment versus fear, (3) cognitive response to MI: self-perception, attitude and self-efficacy, and (4) access to support and resources, including PA facilities and social support. Participants highlighted a lack of available guidance on maintaining PA behaviour change following CR and that advice on the frequency and intensity of exercise to follow was often unclear and confusing. Feelings of vulnerability and fear of overexertion were apparent, affecting participants self-efficacy to exercise. CONCLUSIONS: Current CR programmes fail to address PA belief systems and perceptions of self-efficacy to exercise. Interventions that address feelings of vulnerability and fear of overexertion may be beneficial. Providing ongoing PA advice and access to social support may facilitate patients to maintain changes in PA.

Sun exposure among teenage and young adult cancer survivors in the United Kingdom.

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.

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

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.

Nutrition screening, assessment, and intervention practices for children with cancer in Aotearoa, New Zealand.

OBJECTIVE: The purpose of this study was to investigate dietetic resources and current nutrition screening, assessment, and intervention practices in pediatric oncology centers in Aotearoa, New Zealand. METHODS: A national survey of the two specialist treatment centers and 14 shared care centers that provide care to childhood cancer patients in Aotearoa, New Zealand, was conducted. RESULTS: The two specialist treatment centers in Aotearoa, New Zealand, were the only centers with a dedicated dietetic oncology full-time equivalent resource; this full-time equivalent resource was devoted to inpatient care. Only 5 shared care centers (44%) had access to general pediatric dietetic support. Dietetic cover for outpatients or day-stay patients and use of standardized nutrition screening and assessment tools were limited. Weight and height were commonly measured, but there was inconsistency in the frequency and recording of measurements. Nutrition interventions, including nutrition education, oral nutrition support, enteral nutrition, and intravenous nutrition, were available within all centers but criteria for initiating support varied. Common barriers to providing nutrition interventions included staff resourcing and ad hoc referral pathways. Awareness of the relevance and clinical benefit of nutrition in pediatric oncology was low. Suggestions to improve nutrition screening, assessment, and intervention within Aotearoa, New Zealand, included the creation of standardized screening and referral criteria. CONCLUSIONS: Resource limitations and lack of nutritional screening and assessment prevent adequate nutritional intervention for children with cancer in Aotearoa, New Zealand. Akin to other high-income countries, there is a need to harmonize the management of nutritional challenges in children with cancer. This study provides a first step in establishing an evidence base to help support efforts to address this need in Aotearoa, New Zealand.

Navigating nutrition as a childhood cancer survivor: Understanding patient and family needs for nutrition interventions or education.

AIM: Nutrition challenges are common during childhood cancer treatment and can persist into survivorship, increasing the risk of non-communicable diseases. Evidence-based practice and implementation of nutrition interventions/education for childhood cancer survivors has been poorly investigated and may influence their future health. This study aimed to explore the nutrition interventions/education needs of childhood cancer survivors and the barriers and facilitators to delivering follow-up services in New Zealand. METHODS: Semi structured interviews were conducted with childhood cancer survivors and/or their families (n=22) and health professionals (n=9) from a specialist paediatric oncology centre in New Zealand. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed inductively using thematic analysis. A multi-level consensus coding methodology was used where each theme and associated subthemes were discussed with the study team for confirmation to ensure accurate coding and analysis. RESULTS: Three themes emerged from the analysis: (1) the current survivorship care pathway does not provide adequate interventions/education, (2) weight and dietary changes are common challenges and (3) requirements for interventions/education in survivorship are varied. Common nutrition-related concerns included fussy eating/limited dietary intake, poor diet quality, difficulties with tube weaning, and challenges with weight gain. Participants expressed a desire for education on healthy eating alongside information about cancer-related nutrition issues, such as learned food aversions. A preference for clear referral pathways and multifaceted interventions tailored to individual patient needs was identified. CONCLUSION: The trifecta of treatment side effects, negative feeding practices and poor messaging from health professionals creates a challenging environment to optimise nutrition. A stepped care model matching the intervention intensity with the childhood cancer survivors is required. Education for healthcare professionals will improve the delivery of timely interventions/education and monitoring practices.

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

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.

Sleep Quality Among Teenagers and Young Adults With Cancer.

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.

Usability testing of an e-learning resource designed to improve medical students' physical activity prescription skills: a qualitative think-aloud study.

OBJECTIVE: An e-learning resource (MEdic GAming, MEGA) was developed based on the contents of the Faculty of Sports and Exercise Medicine exercise prescription booklet. This study aimed to (i) explore medical students' perspectives of physical activity promotion and e-learning and (ii) investigate medical students' response to the design, content and usability of the MEGA e-learning resource. DESIGN: Qualitative think-aloud interview study. SETTING: A London medical school. PARTICIPANTS: 19 undergraduate medical students were interviewed using the think-aloud method while using the e-learning resource concurrently. RESULTS: In general, medical students felt current education on physical activity is inadequate and held a strong desire for more teaching on exercise medicine. Students believed the MEGA e-learning resource addressed a gap in their knowledge on physical activity but noted e-learning should not replace face-to-face teaching and suggested physical activity education would be best delivered through a blended learning approach. Students felt such an approach would allow better opportunity to practice physical activity counselling skills with patients while on clinical placement. Students' motivation to engage with the MEGA e-learning resource was positively impacted by aesthetically appealing design and interactive gamification elements such as self-assessment quizzes and visual progress tracking. CONCLUSION: Medical students value the role of physical activity in health but are disappointed by the lack of teaching within the current medical curriculum. E-learning resources, such as MEGA, which contain interactive features are a viable means to integrate physical activity into the undergraduate curriculum but should be supplemented by the opportunity to practice physical activity counselling in-person.

A Systematic Review and Narrative Synthesis of Exercise Interventions to Manage Fatigue Among Children, Adolescents, and Young Adults with Cancer.

Exercise is known to improve fatigue among adult cancer patients however there is limited understanding of this relationship in children, adolescents, and young adults (AYA) with cancer. The aim is to evaluate the effect of exercise on fatigue outcomes among children and AYA with cancer and to identify important parameters of exercise (frequency, intensity, time, type, and setting), which may be relevant for future intervention design. A systematic search of PubMed, MedLine, CENTRAL, Embase, and Web of Science databases was conducted in December 2019, for studies within the last decade, reporting the effect of exercise on fatigue among cancer patients and survivors 0-24 years of age. Quality assessment was conducted using the Physiotherapy Evidence Database (PEDro) and "Before/After Studies with No Control Group" scales. Seventeen studies (n = 681 participants) were included, of which six were randomized controlled trials (RCTs), and the remaining being pilot (n = 5) or feasibility studies (n = 6). Across studies there was great heterogeneity in intervention delivery, frequency (range: 1-7 days a week), time (range: 10-60 minutes), and duration (range: 3-24 weeks). A positive effect of exercise on fatigue was observed, however, most changes in fatigue were not statistically significant. Exercise is beneficial for reducing fatigue in young cancer patients. However, due to the heterogeneity and quality of existing interventions, firm conclusions about the most effective mode and format of exercise intervention cannot be drawn. There is a need for more definitive large-scale RCTs that can provide data of sufficient quality.

The Exercise Oncology Knowledge Mobilization Initiative: An International Modified Delphi Study.

INTRODUCTION: Exercise is vital to health and well-being after a cancer diagnosis yet is poorly integrated in cancer care. Knowledge mobilization (KM) is essential to enhance exercise opportunities. We aimed to (1) develop and refine a list of highly important exercise oncology research and KM themes and (2) establish the relative importance of the themes for supporting the implementation of exercise as a standard of care for people living with and beyond cancer. METHODS: Informed by the Co-Produced Pathway to Impact KM framework, a modified Delphi study approach was used to develop, rate, and rank exercise oncology research and KM themes through an international stakeholder workshop and a three-round iterative online survey. Open-ended stakeholder feedback from cancer survivors, healthcare practitioners (HCPs), qualified exercise professionals (QEPs), policy makers, and researchers was used to update themes between survey rounds. Themes were ranked from highest to lowest importance and agreement was examined across all stakeholders and within stakeholder groups. RESULTS: A total of 269 exercise oncology stakeholders from 13 countries participated in the study. Twelve final exercise oncology research and KM themes were produced. The final top ranked research themes were related to: (1) QEP integration into primary cancer care teams, (2) Exercise oncology education for HCPs, and (3) Accessibility of cancer exercise programs & support services. There was statistically significant agreement between stakeholders (p<0.001) and within stakeholder groups (p's≤0.02) on the general rankings of themes (i.e., some themes generally ranked higher and lower compared to others). Low Kendall's W statistics indicated variability related to the specific ranked order of the themes between stakeholders and within stakeholder groups. Moreover, there were key differences in the rankings for specific themes between policy makers and other stakeholder groups that highlight potentially important discordance in the research and KM priorities for policy makers that warrants further study. CONCLUSION: These findings can be used to guide initiatives and align stakeholders on priorities to support exercise implementation as a standard of cancer care. Additional research is needed to better understand the differences in the proposed research and KM priorities across stakeholders.

Trekstock Meet & Move: The Impact of One-Day Health and Well-Being Events for Young Adults with Cancer.

Purpose: To evaluate the impact of a series of one-day events delivered by Trekstock, a charity supporting young adults with cancer in the United Kingdom. Methods: Data on physical activity, mood, perceived support, self-efficacy, and confidence to be active were collected at three time points: before, after, and 2 weeks following the Meet & Move events. Results: Ninety-seven young adults with cancer (mean age: 29 years, 35% still receiving active treatment) attended a Trekstock Meet & Move event and participated within the evaluation. Baseline data demonstrated that before attending a Meet & Move event, 27% (n = 23) of young adults reported feeling their cancer excluded them from engaging in exercise, 44% (n = 37) reported concern that exercise will cause pain or injury, and only 38% (n = 32) knew what exercise they could do. Data collected post-event and at follow-up indicated that Meet & Move had a positive impact upon attendees' self-efficacy and confidence to be active with more than half reporting they felt inspired after attending. There was also a significant reduction in reported worry that exercise may cause pain or injury and reported perception of feeling left out of exercise because of cancer (p < 0.05). Following engagement in the Meet & Move events, 45% of attendees had either signed up for an additional Trekstock physical activity program or initiated engagement in a new type of physical activity on their own. Conclusion: Trekstock Meet & Move events inspire and motivate young adults with cancer in their 20s and 30s to be active.

Integrating physical activity promotion into UK medical school curricula: testing the feasibility of an educational tool developed by the Faculty of Sports and Exercise Medicine.

BACKGROUND: At present education on exercise medicine and physical activity (PA) promotion does not feature heavily within the medical curriculum. OBJECTIVES: The purpose of this study was to test the feasibility of a self-directed educational tool (Faculty of Sports and Exercise Medicine (FSEM) exercise prescription booklet) on medical students' understanding of PA in disease management. METHODS: Students from 22 UK medical schools were invited to complete a brief online questionnaire before and after being provided access to the FSEM exercise prescription booklet. RESULTS: A total of 205 students responded to the open invitation to participate. At baseline 59% of students agreed that PA promotion was an important part of a doctor's job with 86% agreeing that PA was important in the prevention of disease. However, confidence to prescribe PA and knowledge of chief medical officer's adult PA guidelines was low. Following use of the FSEM booklet students' (n=53) knowledge of PA guidelines and confidence to advise patients about PA significantly improved (p<0.05). Correct response answers to case scenarios covering PA in disease management (specifically osteoarthritis and cancer) also improved (32% and 44% increase, respectively, p<0.01). CONCLUSION: Self-guided educational tools have the potential to improve the exercise prescription skills of undergraduate medical students. Future research should compare different methods of delivering education on PA within medical schools to determine the most effective means of integrating PA into the curriculum.

Digital Interventions to Support Adolescents and Young Adults With Cancer: Systematic Review.

BACKGROUND: The last decade has seen an increase in the number of digital health interventions designed to support adolescents and young adults (AYAs) with cancer. OBJECTIVE: The objective of this review was to identify, characterize, and fully assess the quality, feasibility, and efficacy of existing digital health interventions developed specifically for AYAs, aged between 13 and 39 years, living with or beyond a cancer diagnosis. METHODS: Searches were performed in PubMed, EMBASE, and Web of Science to identify digital health interventions designed specifically for AYA living with or beyond a cancer diagnosis. Data on the characteristics and outcomes of each intervention were synthesized. RESULTS: A total of 4731 intervention studies were identified through the searches; 38 interventions (43 research papers) met the inclusion criteria. Most (20/38, 53%) were website-based interventions. Most studies focused on symptom management and medication adherence (15, 39%), behavior change (15, 39%), self-care (8, 21%), and emotional health (7, 18%). Most digital health interventions included multiple automated and communicative functions such as enriched information environments, automated follow-up messages, and access to peer support. Where reported (20, 53% of studies), AYAs' subjective experience of using the digital platform was typically positive. The overall quality of the studies was found to be good (mean Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields scores >68%). Some studies reported feasibility outcomes (uptake, acceptability, and attrition) but were not sufficiently powered to comment on intervention effects. CONCLUSIONS: Numerous digital interventions have been developed and designed to support young people living with and beyond a diagnosis of cancer. However, many of these interventions have yet to be deployed, implemented, and evaluated at scale.

Factors associated with physical activity engagement among adults with rheumatoid arthritis: A cross-sectional study.

OBJECTIVES: Physical activity (PA) has a number of benefits for rheumatoid arthritis (RA) patients. However, these patients are more physically inactive than the general population. The primary aim of this study was to investigate factors associated with PA engagement among RA patients. The secondary aim was to identify their preference for PA support. METHODS: There were 96 participants, 76 of whom were female, with a mean age of 56.9 years (range = 34-72 years) and a median RA disease duration of 5 years (interquartile range = 2-12). All patients completed questionnaires assessing demographic status, health status (including cardiovascular disease [CVD] risk and RA disease profile), PA levels and preferences, alongside the perceived benefits of-and barriers to-PA. Hierarchical regressions were carried out to assess the relationship between reported PA levels and both engagement determinants and disease features. RESULTS: Forty-five per cent (n = 44) had low levels (<600 metabolic equivalent-min/week) of PA. Low level of PA was significantly associated with: CVD risk profile (ηp2  = 0.118, p < 0.002); functional disability (ηp2  = 0.206, p < 0.032); pain (ηp2  = 0.154, p < 0.028); general personal (ηp2  = 0.190, p < 0.001) and arthritis-specific personal (ηp2  = 0.170, p < 0.001) barriers to PA; age (ηp2  = 0.076, p < 0.026); and sedentary behaviour (ηp2  = 0.275, p < 0.001). Participants displayed a preference for unsupervised (n = 37, 38.5%), low-intensity (n = 45, 46.9%), indoor home (n = 50, 52.1%) exercises, with no preferences for the diversity of the exercise prescribed (n = 39, 40.6%) or for who provided the exercise counselling (n = 34, 35.4%). CONCLUSIONS: These results suggest that CVD profile, disability, pain, and general and arthritis-specific personal barriers are associated with PA levels among RA patients. Intervention development should address these factors to facilitate an increase in PA uptake.

The development and user evaluation of health behaviour change resources for teenage and young adult Cancer survivors.

PLAIN ENGLISH SUMMARY: This paper describes the methods that were used to develop a health behaviour intervention specifically for teenage and young adult cancer survivors (TYACS). The program of work, carried out in partnership with CLIC Sargent (a UK based cancer charity for children and young people) was guided by The Behaviour Change Intervention Design Process. A systematic review of existing intervention studies was carried out and TYACS were surveyed on their interest in receiving health behaviour information and their preference regarding the format, delivery and timing of such information. Health professionals were also surveyed to gather their views on how health behaviour information would be best delivered to young people with cancer. The results of these studies informed the development of a collection of health behaviour change intervention resources containing comprehensive lifestyle information and behaviour change support tools. TYACS and TYA health professionals were invited to review and provide feedback on the relevance, appeal and usability of the resources. It is hoped that by involving TYACS and TYA representatives at every stage of intervention development the problem of low uptake and adherence commonly encountered during intervention piloting will be prevented. ABSTRACT: Background Teenage and Young Adult Cancer Survivors (TYACS) are advised to adopt a healthy lifestyle in order to reduce the impact of cancer and its treatments upon their long-term health. However, at present there are no interventions available in the UK to support TYACS to lead a healthy lifestyle. To inform the development of a lifestyle intervention for TYACS a partnership was set up between academic behavioural scientists and CLIC Sargent, a cancer charity which supports children and young people. Methods A series of studies to understand patient and professionals needs and perspectives regarding health behaviour change were carried out. TYACS were surveyed to gather data on their current health behaviour status; interest in, and experience of receiving, lifestyle advice; and preference regarding the type, format, and delivery of a lifestyle intervention. Health care professionals were surveyed simultaneously to gather their views on how best to promote health behaviour change to TYACS. In this paper we summarise key findings from the development work, the resulting lifestyle intervention, and new data from a preliminary evaluation study exploring TYACS and TYA health professionals' views on the relevance, appeal and usability of the intervention resources. Results A collection of health behaviour change intervention resources containing lifestyle information and behaviour change support tools were developed. These intervention resources were well received by TYACS and health professionals with the majority rating the information as high quality, helpful and relevant. Over 80% of TYACS reported they would find the support tools 'very appealing' or 'quite appealing'. TYACS and health professionals provided feedback on how the resources could be improved including commenting that more personalized or tailored health behaviour information would be beneficial. Discussion and conclusion It is hoped that by involving TYACS and TYA representatives at every stage of intervention development,and carrying out a preliminary evaluation of the intervention resources, the problem of low uptake and adherence commonly encountered during formal intervention piloting and evaluation will be prevented.

Sleep Quality, Fatigue, and Quality of Life Among Teenage and Young Adult Cancer Survivors.

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.

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

Assessing the Quality, Feasibility, and Efficacy of Electronic Patient Platforms Designed to Support Adolescents and Young Adults With Cancer: A Systematic Review Protocol.

BACKGROUND: A range of innovative websites, mobile technologies, eHealth and mHealth platforms have emerged to support adolescents and young adults (AYAs) with cancer. Previous reviews have identified these various applications and solutions, but no review has summarized the quality, feasibility, and efficacy of existing patient platforms (inclusive of websites, mobile technologies, mHealth and eHealth platforms) developed specifically for young people with cancer. OBJECTIVE: This paper describes the design of a protocol to conduct a review of published studies or reports which describe or report on an existing platform designed specifically for AYAs who have had a cancer diagnosis. METHODS: A search string was developed using a variety of key words and Medical Subject Heading and applied to bibliographic databases. General data (sample characteristics, patient platform development, design and, if applicable, pilot testing outcomes) will be extracted from reports and studies. Drawing on a previously developed coding schematic, the identified patient platforms will be coded for mode of delivery into (1) automated functions, (2) communicative functions, and (3) use of supplementary modes. An adapted version of the Mobile App Rating Scale (MARS) will be used to assess the of quality of each identified patient platform. The methodological quality of included studies will be assessed using the Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (QualSyst). Both authors will independently screen eligible studies for final inclusion and will both be responsible for data extraction and appraisal. Data will be synthesized narratively to provide an overview of identified patient platforms. RESULTS: The review began in October 2016 and is currently in progress. The review paper will be submitted for peer-review and publication in the summer of 2017. CONCLUSIONS: This review will be unique in its focus on assessing, where possible, the quality and efficacy of patient platforms for adolescents and young adults diagnosed with cancer. Results generated from this review will provide an invaluable insight into the utility of modern technology in supporting young people with cancer.