The Impact of Specialist Care on Teenage and Young Adult Patient-Reported Outcomes in England: A BRIGHTLIGHT Study.

Purpose: In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13-24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care. Methods: We conducted a multicenter cohort study, recruiting 1114 TYA aged 13-24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Results: Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48-4.09) and 2.93 [1.27-4.59], respectively, p = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM -0.011 [95%CI -0.046 to 0.024] and SOME-TYA-PTC: -0.054 [-0.086 to -0.023]; p = 0.006). Conclusion: The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units.

A systematic review of early phase studies for children and young people with relapsed and refractory rhabdomyosarcoma: The REFoRMS-SR project.

Rhabdomyosarcoma is the commonest soft tissue sarcoma in children. Around one-third of children with rhabdomyosarcoma experience relapse or have refractory disease, which is associated with a poor prognosis. This systematic review of early phase studies in pediatric relapsed/refractory rhabdomyosarcoma was conducted to inform future research and provide accurate information to families and clinicians making difficult treatment choices. Nine databases and five trial registries were searched in June 2021. Early phase studies of interventions for disease control in patients under 18 years old with relapsed/refractory rhabdomyosarcoma were eligible. No language/geographic restrictions were applied. Studies conducted after 2000 were included. Survival outcomes, response rates, quality of life and adverse event data were extracted. Screening, data extraction and quality assessment (Downs and Black Checklist) were conducted by two researchers. Owing to heterogeneity in the included studies, narrative synthesis was conducted. Of 16,965 records screened, 129 published studies including over 1100 relapsed/refractory rhabdomyosarcoma patients were eligible. Most studies evaluated systemic therapies. Where reported, 70% of studies reported a median progression-free survival ≤6 months. Objective response rate was 21.6%. Adverse events were mostly hematological. One-hundred and seven trial registry records of 99 studies were also eligible, 63 of which report they are currently recruiting. Study quality was limited by poor and inconsistent reporting. Outcomes for children with relapsed/refractory rhabdomyosarcoma who enroll on early phase studies are poor. Improving reporting quality and consistency would facilitate the synthesis of early phase studies in relapsed/refractory rhabdomyosarcoma (PROSPERO registration: CRD42021266254).

Experiences and Unmet Needs of Adolescent and Young Adult Survivors of a Brain Tumor (Aged 15-39 Years): A Systematic Review and Meta-ethnography.

BACKGROUND: Brain tumors account for 15% of all adolescent and young adult cancers, and survivors are at risk of ongoing late effects that can severely impact their ability to reach independence. Despite follow-up initiatives advocating a personalized approach, survivors continue to experience ongoing sequelae. A better understanding of the survivorship experience is required to ensure services are able to deliver personalized support. OBJECTIVE: The aim of this systematic search and meta-ethnography was to identify and synthesize qualitative studies to better understand the experiences, perspectives, and needs of adolescent and young adult brain tumor survivors. METHODS: Five databases were searched using predefined criteria, studies were independently screened by two researchers, and those meeting inclusion criteria were synthesized. RESULTS: Twenty-seven studies were synthesized, generating 2 main themes, each with subthemes: (1) individual factors impacting resilience, namely, positive coping styles, managing emotions, and family functioning, and (2) cancer-related factors that challenge the individual, namely, living with societal expectations and barriers to coping. CONCLUSION: The conceptual framework illustrates the challenges and resilience of survivors along the continuum from adolescence to adulthood, reflecting the needs of this age group in 1 model, despite it being a time of rapid growth. The lack of awareness of potential physical and emotional late effects challenges individual resilience, which is further challenged when significant milestones cannot be reached. IMPLICATIONS FOR PRACTICE: There is a role for follow-up services to identify and address unmet needs, provide better information to equip survivors to manage late effects, and support families, particularly those who underwent more intensive treatment.

What matters to you? Engaging with children in the James Lind Alliance Children's Cancer Priority Setting Partnership.

BACKGROUND: Previous priority setting exercises have sought to involve children, but in the final reporting, it is evident that few children had been engaged through the process. A primary aim in the Children's Cancer Priority Setting Partnership was to find out from children what they want research to focus on. We report on our experience to inform methods of engagement with children in future James Lind Alliance Priority Setting Partnerships and similar exercises. METHODS: We followed the James Lind Alliance process, collecting and shortlisting questions via online surveys with adult survivors of childhood cancer, carers, and professionals, and holding a final workshop. Alongside this, a parallel process to collect and prioritise questions from children was undertaken. We created animations for parents/carers to explain the project and surveys to children, gathered questions via online surveys and held a workshop with children to identify their priorities. RESULTS: Sixty-one children and young people with cancer and 10 siblings, aged 3-21 years, submitted 252 potential questions/topics via the surveys. Submissions were refined into 24 summary questions. These questions were discussed at a workshop with eight children; they also added more questions on topics of importance to them. Workshop participants prioritised the Top 5 questions; top priority was, 'How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child's care)'. The Top 5 also included cancer prevention, treatments closer to home, early diagnosis, and emotional support. These questions were taken to the final workshop at which the Top 10 priorities were decided, all five children's priorities were reflected in the final Top 10. CONCLUSIONS: We have demonstrated that it is possible to successfully involve children directly in setting priorities for future research. Future priority setting exercises on topics relevant to children, should seek to include their views. The Children's Cancer Top 10 priorities reflect the voices of children and should inform the funding of future research.

Priority Setting Partnerships find out what areas of research are important to patients, families, and the professionals who care for them. Few Priority Setting Partnerships have involved children, so what matters to them may not have been well-represented. The Children's Cancer Priority Setting Partnership aimed to find out directly from children what research we should do. We collected questions/topics for research from children using online surveys. We made animations to explain the project and surveys to children. Two-hundred and fifty-two questions were sent in by 61 children and young people with cancer and 10 siblings. We grouped similar questions together into 24 summary questions. Summary questions were discussed at a workshop with eight children. Workshop participants added more questions on topics that mattered to them, and decided their Top 5 questions. The top question was, 'How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child's care)'. The Top 5 questions included: preventing cancer, having treatments nearer home, early diagnosis, and emotional support. These questions were taken to the final project workshop, this was with adults, including childhood cancer survivors, where the Top 10 priorities were decided. All five children's priorities were included in the Top 10. We have shown it is possible to successfully involve children in setting research priorities. Future priority setting exercises on topics that affect children should actively seek and include their views.

Research priorities for children's cancer: a James Lind Alliance Priority Setting Partnership in the UK.

OBJECTIVES: To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda. DESIGN: James Lind Alliance Priority Setting Partnership. SETTING: UK health service and community. METHODS: A steering group oversaw the initiative. Potential research questions were collected in an online survey, then checked to ensure they were unanswered. Shortlisting via a second online survey identified the highest priority questions. A parallel process with children was undertaken. A final consensus workshop was held to determine the Top 10 priorities. PARTICIPANTS: Children and survivors of childhood cancer, diagnosed before age 16, their families, friends and professionals who work with this population. RESULTS: Four hundred and eighty-eight people submitted 1299 potential questions. These were refined into 108 unique questions; 4 were already answered and 3 were under active study, therefore, removed. Three hundred and twenty-seven respondents completed the shortlisting survey. Seventy-one children submitted questions in the children's surveys, eight children attended a workshop to prioritise these questions. The Top 5 questions from children were taken to the final workshop where 23 questions in total were discussed by 25 participants (young adults, carers and professionals). The top priority was 'can we find effective and kinder (less burdensome, more tolerable, with fewer short and long-term effects) treatments for children with cancer, including relapsed cancer?' CONCLUSIONS: We have identified research priorities for children's cancer from the perspectives of children, survivors, their families and the professionals who care for them. Questions reflect the breadth of the cancer experience, including diagnosis, relapse, hospital experience, support during/after treatment and the long-term impact of cancer. These should inform funding of future research as they are the questions that matter most to the people who could benefit from research.

Guideline for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients: 2023 update.

Objective was to update a clinical practice guideline (CPG) for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients. We reconvened a multi-disciplinary and multi-national panel. While the previous 2018 CPG evaluated adult and pediatric randomized controlled trials (RCTs) to manage fatigue, this 2023 update revised previous recommendations based only on pediatric RCTs. Twenty RCTs were included in the updated systematic review. Physical activity significantly reduced fatigue (standardized mean difference -0.44, 95% confidence interval -0.64 to -0.24; n = 8 RCTs). Using the 2018 recommendations as a basis, the panel continued to make strong recommendations to use physical activity, and to offer relaxation, mindfulness or both, to manage fatigue in pediatric patients. Cognitive or cognitive behavioral therapies may be offered. Pharmacological approaches should not be routinely used. The panel made a new good practice statement to routinely assess for fatigue, ideally using a validated scale.

The Evolution of Worldwide Nurse-Led Cancer Research in the Last 2 Decades (2004-2022): A Bibliometric Mapping and Visual Analysis.

BACKGROUND: Research led by nurses has evolved rapidly over the last 2 decades globally. Assessing the work that has been conducted so far can help the specialty to strategically shape future directions of nurse-led cancer research. OBJECTIVE: The aim of this study was to provide a comprehensive, up-to-date synthesis of all nurse-led cancer research published articles over 20 years. METHODS: A bibliometric analysis was used. Three databases were used to retrieve nurse-led cancer research publications for the period from January 1, 2004, to March 11, 2022. RESULTS: A total of 7043 original articles were retrieved. A significant increase in nurse-led cancer research over the past 2 decades was evident. The United States and United Kingdom were the most productive countries in terms of the number of published articles. Minimal international collaboration was observed among low- or middle-income countries versus high-income countries. Breast cancer, palliative care, and quality of life received the most attention in nurse-led cancer research, followed by education, pain, and communication. Very few publications addressed cancer prevention, breaking bad news, and cancer rehabilitation. CONCLUSION: Areas to consider in the future include more international collaborations on commonly agreed research agendas, capacity building to allow more research beyond the few countries that dominate the publications, and more focus on low- or middle-income countries. IMPLICATIONS FOR PRACTICE: The findings of this study provide direction for future research led by cancer nurses and the areas that warrant further investigation.

Complications and outcomes of gastrostomy versus nasogastric tube feeding in paediatric allogeneic bone marrow transplant: A prospective cohort study.

BACKGROUND & AIMS: The intensive conditioning regimens administered during bone marrow transplant (BMT) frequently cause mucositis, gastrointestinal toxicity and reduced oral intake. Children are consequently at risk of malnutrition. First-line nutrition support is recommended as enteral nutrition (EN). Nasogastric tube (NGT) is the mainstay for administration. Gastrostomies provide an alternative, but there is limited evidence of their efficacy and safety in paediatric BMT. This study aimed to compare enteral tube complications and nutritional and clinical outcomes between children with a gastrostomy versus NGT throughout BMT. METHODS: A prospective cohort study was conducted at a single centre in the United Kingdom. During pre-admission consultations families were offered choice of a prophylactic gastrostomy or NGT. Children undergoing allogeneic BMT were recruited from April 2021 to April 2022. Data compared between children with either tube included: tube complications, change in weight, body mass index and mid-upper-arm circumference, calorie, protein and fluid intake, timing and use of EN and parenteral nutrition, survival, graft-versus-host disease and length of admission. Following BMT, data were collected weekly for the first six weeks from electronic records, monthly thereafter from 3-day averaged food diaries and clinic assessments, until six months post-BMT. RESULTS: Nineteen children with NGT were compared to 24 with a gastrostomy. Of gastrostomy complications, 94.2% (129/137) were minor, mechanical issues being most common (80/137). Dislodgement comprised 80.2% (109/136) of NGT complications. No significant differences were seen between tubes on nutritional, anthropometric and clinical outcomes. CONCLUSIONS: Gastrostomies were popular with families, relatively safe, associated with mostly minor complications and similarly effective as NGTs in supporting children's nutritional intake and status. Where an NGT may not be tolerated, a prophylactic gastrostomy could be considered. Placement of either tube requires balancing their risks, benefits, the child's nutritional status, conditioning, expected duration of EN and family preferences.

What do we know about the psychosocial issues associated with cancer during pregnancy? A scoping review and gap analysis.

OBJECTIVES: There is a global increase in the number of women diagnosed with cancer during their pregnancy and a nascent evidence base to guide their supportive care. The purposes of this study were to (1) map research on the psychosocial issues affecting women and their partners on diagnosis and treatment for cancer during pregnancy; (2) determine available supportive care or educational interventions; and (3) identify knowledge gaps for future research and development. DESIGN: Scoping review. SEARCH STRATEGY: Six databases were searched (Scopus, CINAHL, PsycINFO, Medline, Intermid, Maternal and Infant Health) to retrieve primary research (January 1995 to November 2021) investigating women and/or their partner's decision-making and their psychosocial outcomes during and after pregnancy. DATA EXTRACTION AND SYNTHESIS: Sociodemographic, gestational and disease characteristics of participants and psychosocial issues identified were extracted. Leventhal's self-regulatory model of illness provided a framework for mapping study findings enabling evidence synthesis and gap analysis. RESULTS: Twelve studies were included, conducted in eight countries in six continents. Most women (70% of 217) were diagnosed with breast cancer during pregnancy. Reporting of sociodemographic, psychiatric, obstetric and oncological characteristics that are important in assessing psychosocial outcomes was inconsistent. None of the studies had a longitudinal design and no supportive care or educational interventions were identified. The gap analysis highlighted the lack of evidence about pathways to diagnosis, impact of late effects and how internal/social resources may affect outcomes. CONCLUSIONS: Research has focused on women with gestational breast cancer. Little is known about those diagnosed with other cancers. We encourage future study designs to capture data on sociodemographic, obstetric, oncological and psychiatric characteristics and adopt a longitudinal approach to explore the longer term psychosocial impact on women and their families. Future research should include outcomes that are meaningful for women (and their partners) and draw on international collaboration to accelerate progress in this field.

Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review.

BACKGROUND: Parents of children who are diagnosed with a poor-prognosis cancer want to be involved in making treatment-related decisions for their child. They often make repeated decisions depending on their child's response to treatment and can experience decisional regret as a consequence. Understanding parent values and preferences when making treatment-related decisions may help enhance discussions with healthcare professionals and identify additional ways of providing support to this parent population. OBJECTIVES: To explore parent values and preferences underpinning treatment decision-making for children receiving cancer-directed therapy for a poor prognosis cancer. METHODS: A scoping review of research literature and systematic reviews from qualitative, quantitative, and mixed methods studies was conducted following Joanna Briggs Institute methodology. Articles which included parents of a child who received cancer-directed therapy for a poor-prognosis childhood cancer, under the age of eighteen years were considered. Four electronic databases were searched (CINAHL, Medline, PsychINFO, Web of Science Core Collections). Reference and citation lists of all included full-text articles were also searched. Summative content analysis was used to synthesise findings and develop themes. RESULTS: Twelve articles were included. Parent decision-making was affected by underpinning factors: hope for a cure, fear of their child dying and uncertainty. Influencing factors: opinions of others, child's wishes, and faith and religion had the potential to inform decision-making processes. Parents valued having enough time, being a good parent and being involved in decision-making. Preferences within these values varied resulting in the potential for conflict and 'trade-offs' in making decisions. CONCLUSIONS: Parent decision-making in poor-prognosis childhood cancer is complex and extends beyond values and preferences. Underpinning factors and values are consistent through the decision-making process with influencing factors and preferences varying between parents. Preferences can conflict when parents want to continue cancer-directed therapy whilst maintaining their child's quality of life or can change depending on a parents' cognitive state as they realise cure might be unlikely.

Care coordination, consistency and continuity: the case of the key worker role in children's cancer care.

PURPOSE: The overall aim was to evaluate the key worker role across principal treatment centres for children with cancer in England, Wales and Scotland. METHODS: Mixed-methods case study gathering data from multiple perspectives using questionnaires, interviews, focus groups and reports/performance documents over a two-year period. Framework approach was adopted to analyse transcripts and documentary data. RESULTS: Participants included: 22 nurse specialist key workers, 103 parents, 85 professionals and 10 children/young people. Qualitative and quantitative data were woven together, to best illuminate key worker services. Four main models of care were described as well as the context of care and process of care. Key working effectiveness centred around three pillars: care coordination; expert knowledge, experience and expertise; relationship. These were essential to improved family experience, emotional wellbeing, and delivery of individualized care closer to home. CONCLUSIONS: The role is complex and diverse, responding to local needs. Certain conditions, (e.g., high caseload) placed limits on enacting the three pillars, diminishing the positive experience of families. When they worked well, key workers reduced the fragmented nature of services and families placed great value on keeping the same key worker from diagnosis into long-term care. Retaining these roles, where already in place, or including, if not, we would recommend, factoring into budgets to sustain and expand such roles.

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.

Developing, Nurturing, and Sustaining an Adolescent and Young Adult-Centered Culture of Care.

Adolescents and young adults have unique needs which differ from those of children or adults. In the United Kingdom, we have dedicated services, which are diverse in how they are managed and delivered. A multiple-case study was conducted in young people's cancer services in four geographical regions of England. Data collection included: semi-structured interviews with healthcare professionals (n = 41) and young people (n = 29); and observation (total = 120 hours). Thematic analysis was used to synthesize and interpret five emerging themes describing the way a culture of adolescent and young adult-specific care developed. To develop a cultural attitude which embraced and promoted core values, leadership was needed, as well as high patient volume accessing a service. Time was essential, an adolescent and young adult-centered culture of care does not happen overnight, it needs time and dedicated staff to evolve, but once in place, services have a significant impact on the experience of care.

Associations between diagnostic time intervals and health-related quality of life, clinical anxiety and depression in adolescents and young adults with cancer: cross-sectional analysis of the BRIGHTLIGHT cohort.

BACKGROUND: The association of diagnostic intervals and outcomes is poorly understood in adolescents and young adults with cancer (AYA). We investigated associations between diagnostic intervals and health-related quality of life (HRQoL), anxiety and depression in a large AYA cohort. METHODS: Participants aged 12-24 completed interviews post-diagnosis, providing data on diagnostic experiences and the patient-reported outcomes (PROs) HRQoL, anxiety and depression. Demographic and cancer information were obtained from clinical and national records. Six diagnostic intervals were considered. Relationships between intervals and PROs were examined using regression models. RESULTS: Eight hundred and thirty participants completed interviews. In adjusted models, across 28 of 30 associations, longer intervals were associated with poorer PROs. Patient intervals (symptom onset to first seeing a GP) of ≥1 month were associated with greater depression (adjusted odds ratio (aOR):1.7, 95% Confidence Interval (CI):1.1-2.5) compared to <1 month. ≥3 pre-referral GP consultations were associated with greater anxiety (aOR:1.6, CI:1.1-2.3) compared to 1-2 consultations. Symptom onset to first oncology appointment intervals of ≥2 months was associated with impaired HRQoL (aOR:1.8, CI:1.2-2.5) compared to <2 months. CONCLUSIONS: Prolonged diagnostic intervals in AYA are associated with an increased risk of impaired HRQoL, anxiety and depression. Identifying and delivering interventions for this high-risk group is a priority.

Nutritional support practices and opinions toward gastrostomy use in pediatric bone marrow transplant centers: A national survey.

OBJECTIVE: Previous surveys have shown deviations in nutritional practices from international guidelines during bone marrow transplant (BMT). Guidelines recommend enteral nutrition first-line and nasogastric tubes are the mainstay for its provision. Gastrostomies provide an alternative, yet their use is less common. This national survey investigated nutrition support practices in pediatric allogeneic BMT centers and compared clinicians' opinions on gastrostomy use. The aim of this study was to identify the national picture of nutritional support practices across pediatric allogeneic BMT centers, including use and opinions of dietitians, clinical nurse specialists, and physicians, toward gastrostomy feeding. METHODS: An online survey was administered to 12 centers. The lead dietitian answered questions regarding nutritional counseling, screening, assessment, and interventions. Questions regarding current use, perceived advantages, and problems of gastrostomies were answered by the dietitian, lead clinical nurse specialist, and physician. RESULTS: A 100% response rate was achieved from 12 centers (N = 36 clinicians). Nutritional counseling was provided in 92% of centers before and routinely throughout admission, 83% screened on and regularly throughout admission, 83% assessed nutritional status before transplant, and 92% used enteral nutrition first-line. Forty-two percent of the centers used gastrostomies. In those not using gastrostomies, 76% of clinicians felt some children should be offered a gastrostomy. Clinicians perceived less displacements (78%) and cosmetic appearance (69%) as the most common advantages of gastrostomies over nasogastric tubes. Risks associated with surgery (92%) and tube/stoma complications (58%) were the most common perceived problems. CONCLUSIONS: A similar approach was shown on many aspects of nutritional support. Gastrostomy use divided opinion with differences in use and perceived advantages, but agreement on potential complications. Despite their risks, clinicians wanted to use gastrostomies more. Placement requires careful consideration of the risks, benefits, and family preferences.

Systematic review of gastrostomy complications and outcomes in pediatric cancer and bone marrow transplant.

BACKGROUND: Nutrition support is essential in children with cancer, including those undergoing bone marrow transplant (BMT), to reduce the risk of malnutrition and associated deleterious outcomes. Enteral nutrition is more commonly provided via nasogastric than gastrostomy tubes because of safety concerns with the latter in immunocompromised children. This systematic review investigated the incidence and type of complications and outcomes in pediatric cancer patients fed by gastrostomy. METHODS: Databases were searched for randomized and observational studies investigating the use of any gastrostomy device in children aged <18 years with any cancer diagnosis, including those undergoing BMT. Five cohort and 11 case series studies were included. Owing to clinical heterogeneity, meta-analyses were not performed. RESULTS: Quality of evidence varied, with five studies judged at serious risk of bias and poor quality; however, the remaining 11 were considered to range from moderate to good quality. Across studies, 54.6% of children developed one or more complications, of which 76.6% were classified as minor, 23.4% major. The most frequent complications included inflammation (52% of episodes), infection (42.1%), leakage (22.3%), and granuloma (21%). Evidence regarding infection rates in cancer/BMT patients compared with other disease states was inconclusive. Gastrostomy feeding was associated with improvement or stabilization of nutrition status in 77%-92.7% of children. CONCLUSION: Gastrostomy feeding in this population is relatively safe and effective in stabilizing or improving nutrition status throughout treatment. Complications are frequent but mostly minor. Placement requires careful consideration of the complications, benefits, nutrition risk and status at diagnosis, and quality of life.

Reporting the whole story: Analysis of the 'out-of-scope' questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey.

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.

Acceptance and commitment therapy for young brain tumour survivors: study protocol for an acceptability and feasibility trial.

INTRODUCTION: Survivors of childhood brain tumours have the poorest health-related quality of life of all cancer survivors due to the multiple physical and psychological sequelae of brain tumours and their treatment. Remotely delivered acceptance and commitment therapy (ACT) may be a suitable and accessible psychological intervention to support young people who have survived brain tumours. This study aims to assess the feasibility and acceptability of remotely delivered ACT to improve quality of life among these young survivors. METHODS AND ANALYSIS: This study is a two-arm, parallel group, randomised controlled trial comparing ACT with waitlist control at 12-week follow-up as the primary endpoint. Seventy-two participants will be recruited, who are aged 11-24 and have completed brain tumour treatment. Participants will be randomised to receive 12 weeks of ACT either immediately or after a 12-week wait. The DNA-v model of ACT will be employed, which is a developmentally appropriate model for young people. Feasibility will be assessed using the proportion of those showing interest who consent to the trial and complete the intervention. Acceptability will be assessed using participant evaluations of the intervention, alongside qualitative interviews and treatment diaries analysed thematically. A range of clinical outcome measures will also assess physical and mental health, everyday functioning, quality of life and service usage at 12-week follow-up. The durability of treatment effects will be assessed by further follow-up assessments at 24 weeks, 36 weeks and 48 weeks. ETHICS AND DISSEMINATION: Ethical approval was given by East Midlands, Nottingham 1 Research Ethics Committee (Reference: 20/EM/0237). Study results will be disseminated in peer-reviewed journals, through public events and relevant third sector organisations. TRIAL REGISTRATION: ISRCTN10903290; NCT04722237.

Support interventions provided during palliative care to families with dependent children when a parent has terminal illness: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to identify and map support interventions provided during palliative care to families with dependent children when a parent has a terminal illness. INTRODUCTION: For dependent children, losing a parent through terminal illness can be one of the most traumatic experiences they will face. Without age-appropriate information and support, parental death can lead to unresolved grief, post-traumatic stress, and longer-term negative social, emotional, educational, and behavioral consequences. Support from health care professionals is provided, but challenges within hospice and community palliative care mean the needs of dependent children may not be addressed. Greater emphasis is often placed on children's and families' bereavement needs as opposed to their pre-bereavement needs. The status of pre-bereavement support in palliative care for these families has not been documented. INCLUSION CRITERIA: We will include studies of support interventions provided to families with dependent children when a parent has a terminal illness that are delivered during palliative care and in settings including, but not limited to, hospices, hospitals, and the community (including family and care homes). Empirical, peer-reviewed studies based on qualitative, quantitative, or mixed methods data, and gray literature, reporting any stage of intervention development will be included. METHODS: This review will follow the JBI approach for scoping reviews. Multiple database searches will be conducted. Two authors will independently review full-text articles and extract data. Interventions will be mapped in terms of characteristics, evaluation methods, and implementation challenges. Data will be presented in tables, diagrammatic form, and narrative summary.

Access to and experience of education for children and adolescents with cancer: a scoping review protocol.

BACKGROUND: Cancer diagnosis in childhood or adolescence impacts significantly on school attendance, experience and educational outcomes. While there is longstanding recognition in clinical practice that these effects span the whole illness trajectory and continue beyond treatment completion, further clarity is required on the specific barriers and facilitators to education during cancer treatment and beyond, as well as on the experiences of children and adolescents across the full range of education settings (hospital, home, virtual, original school of enrolment), in order to determine which interventions are successful in improving access and experience from their perspective. The aim of this review is to identify what is known from the existing literature about access to and experience of education for children and adolescents with cancer during and post treatment. METHODS: We have planned a scoping literature review searching the following databases from inception onwards: MEDLINE (Ovid), Embase and Embase Classic, Web of Science Core Collection, Education Resources Index, Sociological Abstracts, APA PsycINFO, SCOPUS, CINAHL Plus, Emcare and The Cochrane Library. In addition, DARE, conference abstracts, key journals, and institutional websites will be searched. Arksey and O'Malley's six-step process will be followed, including a consultation exercise. Studies, reports and policies from any country providing care and treatment for children and adolescents with cancer published in English will be considered eligible for inclusion. Two reviewers will independently screen all citations, full-text articles and abstract data. A narrative summary of findings will be conducted. Data analysis will involve quantitative (e.g., frequencies) and qualitative (e.g., content and thematic analysis) methods. DISCUSSION: This is a timely examination given the increased incidence of childhood cancer, more intensive treatment regimens and improved survival rates for childhood cancer. The inclusion of a substantive consultation exercise with families and professionals will provide an important opportunity to examine the scoping review outputs. Findings will assist the childhood cancer community in developing a comprehensive evidence-based understanding of a significant associated bio-psychosocial impact of cancer diagnosis and treatment and will form the first step towards developing effective interventions and policies to mitigate identified detrimental effects. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework (osf/io/yc4wt).