Teenagers And Young Adults Research Articles

The PAR3TY Project: Revealing Unique Cancer Experiences and Insights of Teenagers and Young Adults through Patient Engagement, Participation, and Performance.

Cancer in teenagers and young adults (TYAs) coincides with major life transitions and presents unique psychosocial challenges. Understanding the experiences and needs of TYAs is critical. TYAs want to play an active role in improving cancer for TYAs; however, few opportunities exist for TYAs to do so. Using a tri-partite methodology, an international team collaborated with four TYA co-researchers in this pilot study to explore how performative staging strategies help convey TYA experiences with cancer. Using creative video, TYA co-researchers shared cancer experiences and insights in novel, impactful ways. The process provided intrinsic benefits for co-researchers to connect with other TYAs and creatively share their experiences and perspectives. Furthermore, it provided space for dialogue between TYAs and cancer care allies where TYAs could convey the nuances of their cancer experiences and how cancer care could be improved. This tri-partite methodology can support TYAs to actively engage in a process of connection, reflection, creation, and dissemination to improve cancer experiences for TYAs.

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.

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

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

Evaluation of Radiotherapy Dose and Survival Outcomes for Teenagers, and Young Adults with Nasopharyngeal Carcinoma in UK and Ireland

Nasopharyngeal carcinoma (NPC) follows a bimodal distribution with a smaller incidence peak in teenagers and young adults (TYAs). In TYAs, an over-whelming proportion are associated with Epstein-Barr virus (EBV). We have evaluated the variation in TYA NPC practice patterns across the UK and Ireland, along with survival outcomes. We performed a multicenter, observational cohort study, of patients aged 13-25 years, with histologically confirmed NPC, treated between the years 2002-2022. An initial expression of interest was sent to selected centers treating H&N patients in the UK and Ireland. For analysis, patients were assessed based on total prescribed dose, with a cut off for low dose (LD) (≤61.2Gy) versus a high dose (HD)(>61.2Gy). Ninety-five patients, from 9 centers, were eligible for inclusion. Patient demographics are shown in table1. At a median follow up of 45 months (IQR 23-111), 3-year overall survival (OS) was 98% (95% CI 93%-100%) with LD versus 91% (95% CI 83%-99%) with HD (Hazard ratio (HR) = 3.0; 95% CI 0.3-27, p = 0.3). 3-year progression free survival (PFS) was 84% (95% CI 71%-97%) with LD versus 83% (95% CI 72%-94%) with HD (HR 1.3; 95% CI 0.4-4.0, p = 0.6), and 5-year PFS was 84% (95% CI 71%-97%) with LD versus 83% (95% CI 72%-94%) with HD (HR 1.3; 95% CI 0.4-4.0, p = 0.6). Incidence of distant metastasis (DM) was 9.9%. 2 patients (6%) with T3-T4 tumors, treated with LD, had locoregional failure (LRF) compared to 1 patient (3%) treated with HD. We have demonstrated excellent survival outcomes for the UK & Ireland TYA NPC patients. As the majority of cases in this age group have EBV+ NPC, with survival similar between LD and HD protocols, we propose that pediatric protocols, with lower radiotherapy doses should be considered for all TYA NPC, with the aim of reducing late effects. Additional analysis to better understand the impact of heterogeneity between both groups, including choice of protocol, induction and adjuvant treatment will follow this study. Prospective evaluation, as part of an international collaboration, is required to optimize the management strategy for this rare cohort of patients.

Dose Volume Thresholds Associated with Acute Skin Toxicities in Proton Beam Therapy

The depth-dose characteristics of proton beam therapy (PBT) mean that the skin-sparing effect is reduced with PBT, potentially leading to an increased incidence and severity of acute radiotherapy induced skin toxicities (RIST). Predictive factors of acute RIST in patients treated with PBT remain largely undefined. In this study, we retrospectively reviewed the acute RIST of patients treated with pencil beam scanning (PBS) PBT to identify dose-volume thresholds which are predictive of acute RIST. All patients treated with PBS-PBT at a single institution between December 2018-October 2022 were included in this study. Acute RIST were recorded as per RTOG grading scale and dichotomized to Grade (G) <2 vs ≥2. Anonymized demographics, clinical and dosimetric data were extracted from electronic patient records and a treatment planning system. Skin structure is defined as 5mm rind grown as an inner margin from the patient contour. The following skin dose-volume statistics were collected: Dmax (maximum dose to any pixel inside the skin contour) and dose to skin volumes in 5Gy increments (V5Gy, V10Gy etc.). Preliminary analyses of dosimetric data of patients with G0, G1 vs ≥G2 acute RIST are presented, with significance assessed at the 5% level using t-tests and univariate logistic regression models, and risk thresholds determined using receiver operating characteristic (ROC) curves. We report the data for 582 patients with extracted dosimetric data. The pediatric, teenage and young adult (TYA) and adult populations were 38%, 19% and 43% respectively. The three most common indications for PBT were head and neck cancers (HNC) (23%), sarcoma (21%), and chordoma (15%). Increasing age, HNC and sarcoma were associated with an increased risk of grade 2+ acute RIST. For patients who developed acute RIST of G2+, the median volume receiving 10Gy, 20Gy, 30Gy, 40Gy and 50Gy were significantly higher (P<0.0001) than patients with G0 and G1. The dose volume effect of acute RIST is greater at 30Gy and above. Similarly, median Dmax was significantly higher in the G2+ acute RIST group compared to G0 and G1 (P<0.0001) for all age groups. Using the ROC curve, we observed threshold volumes (in cm3) for V10Gy, V20Gy, V30Gy, V40Gy and V50Gy (Table 1). The volume of irradiated skin and Dmax are associated with the risk of developing acute RIST in patients treated with PBS PBT. Further work is being done to develop a model predictive of acute RIST in clinical setting.

OS12.5.A HIGH-GRADE GLIOMAS OCCURRING IN TEENAGERS AND YOUNG ADULT PATIENTS COMPRISE NOVEL MOLECULAR SUBGROUPS

Abstract BACKGROUND High-grade gliomas (HGG) arise in any central nervous system location, in adults and children, with a poor prognosis. HGGs in teenagers and young adults (TYA) are understudied; this project aimed to characterise these tumours and identify potential therapeutic targets. MATERIAL AND METHODS HGG samples (n=195, FFPE/FF, 13-30 years) were collected from national/international collaborators, excluding well-characterised entities (histone/IDH-mutant). DNA methylation profiling (Illumina EPIC BeadArrays, brain tumour classifier (MNP v12.5 R package), n=195) classified cases against a reference cohort. Calibrated scores guided workflows to characterise mutational landscapes including RNA-based ArcherDx fusion panel (n=112), whole exome sequencing (n=84), and histological reviews in parallel. Well-characterised entities (n=50, including IDH-mutant tumours (n=18), PXA (n=12)) were excluded. RESULTS Of the cases scoring &amp;gt;0.6, 64% classified as paediatric-type subgroups (pedHGG_RTK1A/B/C (30%), pedHGG_MYCN (10%), pedHGG_A/B (7%), pedHGG_RTK2A (6%)). 29% classified as subgroups more frequently seen in adults (GBM_MES (12%), GBM_RTK1/2 (3%)). 54% classified with a score &amp;lt;0.6. 38% cases were assigned to novel, recently identified, poorly-characterised subgroups with distinct methylation profiles and molecular features (HGG_B, HGG_E, ANTCON, GBM_CBM). Frequency comparisons to publicly available methylation data showed GBM_MES_ATYP tumours are TYA age-specific, in contrast to adult age-specific GBM_MES_TYP. Copy number profiling identified frequent changes across the cohort, including chromosomal gains (chr1q (54%), chr2 (22%), chr7 (41%)) and losses (chr10 (40%), chr13 (64%)). Focal amplifications included PDGFRA (12%), CDK4 (7%), MYCN/ID2 (3%), MYC (2%) and EGFR (0.7%) and the most common focal deletion was CDKN2A/p16 (12%). The most frequent glioma-associated somatic variants included TP53, PDGFRA, EGFR, and NF1. BCOR alterations were enriched compared to adult and paediatric reference cohorts. 10% cases showed a hypermutator phenotype, enriched in HGG_E. CDK4 amplifications were recurrent in GBM_RTK1 and GBM_CBM. Histology showed variable cytological and architectural features within novel subgroups. CONCLUSION TYA HGG comprise novel subgroups with distinct methylation profiles and molecular characteristics, representing opportunities to refine future treatment.

The Association of Resilience with Psychosocial Outcomes in Teenagers and Young Adults with Cancer.

Purpose: There is limited research on the psychological impact of cancer for teenagers and young adults (TYAs) and the role of protective factors such as resilience. This study investigated associations between resilience and psychosocial outcomes in this group. Methods: Data were collected from TYAs (aged 16-24) who attended the TYA cancer clinic at Guy's Hospital between 2013 and 2021. Participants (N = 63) completed psychosocial questionnaires within 4 weeks of their treatment start date (T1) and again between 9 and 15 months later (T2). We used separate multivariable linear regression models to analyze associations of resilience (Brief Resilience Questionnaire) with outcomes measured at T2, including symptoms of depression (Patient Health Questionnaire [PHQ]-9), anxiety (Generalized Anxiety Disorder [GAD]-7), and subjective quality of life. Models were adjusted for age, gender, ethnicity, and T1 outcome assessments. Results: Higher resilience at T1 was associated with increased anxiety (β = 1.68; bootstrapped confidence interval [95% CI -0.28 to 3.19]), depression (β = 1.24; [-0.85 to 2.90]), and quality of life (5.76; [-0.88 to 15.60]). In contrast, an increase in resilience over time was associated with decreases in the same period in anxiety (β = -3.16; [-5.22 to -1.47]) and depression (β = -2.36, [-4.41 to -0.58]), and an increase in quality of life (β = 9.82, [-0.24 to 21.13]). Conclusion: Increases in resilience during cancer treatment were associated with reduced symptoms of depression and anxiety in TYAs. We discuss factors likely to influence these outcomes, the implications for psychosocial interventions in this population, and identify further research to explore the impact of other factors such as diagnosis and treatment type.

HGG-15. HIGH-GRADE GLIOMAS OCCURRING IN TEENAGERS AND YOUNG ADULT PATIENTS COMPRISE NOVEL MOLECULAR SUBGROUPS

Abstract High-grade gliomas (HGG) arise in any central nervous system location, in adults and children, with a poor prognosis. HGGs in teenagers and young adults (TYA) are understudied; this project aimed to characterise these tumours and identify potential therapeutic targets. HGG samples (n=195, FFPE/FF, 13-30 years) were collected, excluding well-characterised entities (histone/IDH-mutant). DNA methylation profiling (Illumina EPIC BeadArrays, brain tumour classifier (MNP v12.5 R package), n=195) classified cases against a reference cohort. Calibrated scores guided workflows to characterise mutational landscapes including RNA-based ArcherDx fusion panel (n=112), whole exome sequencing (n=84), and histological reviews in parallel. Well-characterised entities (n=50, including IDH-mutant tumours (n=18), PXA (n=12)) were excluded. Of the cases scoring &amp;gt;0.6, 64% classified as paediatric-type subgroups (pedHGG-RTK1A/B/C (30%), pedHGG-MYCN (10%), pedHGG-A/B (7%), pedHGG-RTK2A (6%)). 29% classified as subgroups more frequently seen in adults (GBM-MES (12%), GBM-RTK1/2 (3%)). 54% classified with a score &amp;lt;0.6. 38% cases were assigned to novel, recently identified, poorly-characterised subgroups with distinct methylation profiles and molecular features (HGG-B, HGG-E, ANTCON, GBM-CBM). Frequency comparisons to publicly available methylation data showed GBM-MES-ATYP tumours are TYA age-specific, in contrast to adult age-specific GBM-MES-TYP. Copy number profiling identified frequent changes across the cohort, including chromosomal gains (chr1q (54%), chr2 (22%), chr7 (41%)) and losses (chr10 (40%), chr13 (64%)). Focal amplifications included PDGFRA (12%), CDK4 (7%), MYCN/ID2 (3%), MYC (2%) and EGFR (0.7%) and the most common focal deletion was CDKN2A/p16 (12%). The most frequent glioma-associated somatic variants included TP53, PDGFRA, EGFR, and NF1. BCOR alterations were enriched compared to adult and paediatric reference cohorts. 10% cases showed a hypermutator phenotype, enriched in HGG-E. CDK4 amplifications were recurrent in GBM-RTK1 and GBM-CBM. Histology showed variable cytological and architectural features within novel subgroups. TYA HGG comprise novel subgroups with distinct methylation profiles and molecular characteristics, representing opportunities to refine future treatment.

Role of the teenage and young adult blood and marrow stem-cell transplant clinical nurse specialist.

This article explores the role of the teenage and young adult (TYA) blood and marrow stem-cell transplant clinical nurse specialist (CNS) from the author's perspective, and the challenges of developing a novel role. The article aims to provide insight into the role, and review the benefits of the CNS to patient care, thus highlighting the value of developing such a role within other stem-cell transplant centres in the UK.

Knowing to Ask and Feeling Safe to Tell - Understanding the Influences of HCP-Patient Interactions in Cancer Care for LGBTQ+ Children and Young People.

BackgroundLesbian, gay, bisexual, transgender, queer or questioning (LGBTQ+) people experience healthcare inequalities in cancer care. Previous studies have focused on knowledge, attitudes and behaviours of healthcare professionals (HCPs) treating adults with cancer and how these contribute to inequalities. To date, no research has focused on HCPs treating LGBTQ+ children and adolescents with cancer in the UK. This is important given that this group may be at a critical time for exploring their gender identity and sexual orientation, whilst also facing a cancer diagnosis. We aimed to explore the knowledge, attitudes and behaviours of paediatric, teenage and young adult oncology HCPs treating LGBTQ+ patients in the UK.MethodsWe carried out semi-structured interviews with 8 HCPs in paediatric, teenage and young adult (TYA) oncology from the Royal Marsden NHS Foundation Trust. Eight questions were asked, which centred around participants’ knowledge, attitudes and behaviours regarding management of LGBTQ+ patients in oncology. Interview transcripts were analysed by inductive thematic analysis.ResultsWe identified 10 themes, including novel themes (how HCPs acquire knowledge and expectations of a ‘third party’ to be the expert) which may underlie previously observed trends in knowledge, attitudes and behaviours of HCPs. We highlight other themes and HCP concerns specific to care of LGBTQ+ patients in paediatrics (influence of the parental-carer dynamic, concerns around patient age and development as a barrier to disclosure) which require further research. We found evidence of the interrelatedness of HCP knowledge, attitudes and behaviours and the ability of these elements to positively influence each other. We mapped our themes across these elements to form a new suggested framework for improving HCP-patient interactions in LGBTQ+ Cancer Care. We found a need both for individual HCP education and organisational change, with creation of a culture of psychological safety to improve patient care.ConclusionKnowledge, attitudes and behaviours of HCPs are closely interdependent when providing care to young LGBTQ+ patients with cancer. The authors suggest that future efforts to improve care of these patients address this complexity by spanning the domains of our suggested framework. Whilst HCP education is essential, change must also occur at an organisational level.

Excess morbidity and mortality among survivors of childhood acute lymphoblastic leukaemia: 25 years of follow-up from the United Kingdom Childhood Cancer Study (UKCCS) population-based matched cohort

ObjectivesTo examine morbidity and mortality among teenagers and young adults (TYAs) previously diagnosed with acute lymphoblastic leukaemia (ALL) in childhood, and compare to the general TYA population.DesignNational population-based sex-matched and...

The Molecular Landscape of Medulloblastoma in Teenagers and Young Adults.

Simple SummaryMedulloblastoma is a malignant primary brain tumour that commonly occurs in children but also occurs in teenagers and young adults (TYA, aged 13–24 years) frequently enough to warrant attention. While remarkable progress has been made with paediatric tumours, TYAs with medulloblastoma represents an understudied population, lacking dedicated studies. The study aims to comprehensively characterise medulloblastoma in TYAs using data obtained from genomic technologies. It highlights that TYA medulloblastoma constitutes heterogenous molecular subgroups with distinct epigenetic and transcriptomic characteristics. Additionally, the prognostic gene signature-based score stratifies TYA patients into low- and high-risk groups and associates significantly with the outcomes. These results demonstrate unique molecular characteristics of TYA medulloblastoma that may contribute to the clinical differences at presentation between TYAs and other age groups. A better understanding of the TYA-specific biology might impact the treatment of those patients in the future.Medulloblastoma (MB) is a childhood malignant brain tumour but also occurs in teenagers and young adults (TYA). Considering that MB is heterogeneous, this study aimed to define the molecular landscape of MBs in TYAs. We collated more than 2000 MB samples that included 287 TYA patients (13–24 years). We performed computational analyses consisting of genome-wide methylation and transcriptomic profiles and developed a prognostics model for the TYAs with MB. We identified that TYAs predominantly comprised of Group 4 (40%) and Sonic Hedgehog (SHH)-activated (33%) tumours, with Wingless-type (WNT, 17%) and Group 3 (10%) being less common. TYAs with SHH tumours displayed significantly more gene expression alterations, whereas no gene was detected in the Group 4 tumours. Across MB subgroups, we identified unique and shared sets of TYA-specific differentially methylated probes and DNA-binding motifs. Finally, a 22-gene signature stratified TYA patients into high- and low-risk groups, and the prognostic significance of these risk groups persisted in multivariable regression models (P = 0.001). This study is an important step toward delineating the molecular landscape of TYAs with MB. The emergence of novel genes and pathways may provide a basis for improved clinical management of TYA with MB.

The development of a cognitive rehabilitation and psycho-social group programme for teenage and young adult survivors of brain tumours: A feasibility study.

Treatment for childhood and adolescent brain tumours is often intensive, with significant neurocognitive and psycho-social late effects (Zeltzer et al., 2009). This feasibility Study aimed to inform the development of a cognitive rehabilitation and psycho-social group intervention for Teenage and Young Adult (TYA) survivors of brain tumours. A group-based intervention incorporated ideas from the current evidence base, including psychoeducation and compensatory strategy training, with a focus on real-life goals and improving quality of life. Participants (N = 19, 13-24 years) were recruited from the University College London Hospital TYA Oncology Service. Participants had received treatment for a malignant brain tumour and had completed their treatment at least 1 year prior to participation. Four group-based, whole-day interventions ran every 3 months throughout a year. Feasibility criteria were established to answer questions about acceptability of the intervention and recruitment. Qualitative and quantitative feedback from all four groups demonstrated acceptability and suitability of the intervention with regards to the content, structure and delivery. Recruitment presented more of a challenge with 35% fewer referrals than expected. Feedback suggests that the intervention is suitable and acceptable, whilst limitations include numbers of referrals and referral pathways. Future directions are discussed.

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&amp;C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey

IntroductionThe supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).MethodsParticipants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC).ResultsIn total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers.ConclusionThis research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.

OS10.6.A Supportive care needs of TYA childhood brain tumour survivors and their caregivers: a mixed methods study

Abstract BACKGROUND Childhood brain tumour survivors and their family caregivers can experience many late effects of treatment including social, cognitive and physical issues. Yet, the supportive care needs of survivors, now teenagers and young adults (TYAs), and their caregivers population are largely unknown. We aimed to gain an in-depth understanding of this populations’ supportive care needs. MATERIAL AND METHODS This study used a convergent mixed methods design including quantitative (survey) and qualitative data (in-depth semi-structured interviews). Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, at least five years from diagnosis, currently aged 13–30 and their primary caregivers. The results from quantitative and qualitative data were integrated using a Joint Display Table. RESULTS 136 eligible survivors and caregivers (78 survivors/58 caregivers) were approached to take part in the survey. In total, 112 participants (69 survivors/43 caregivers) completed the survey. A further 22 participants took part in face-to-face semi-structured interviews (11 survivors/11 caregivers). The integrated findings indicate that both survivors and caregivers have unmet needs many years after diagnosis. TYA survivors specifically had high unmet needs in relation to their psychological health, social lives (including romantic relationships), employment, and independence. Caregivers experienced even more unmet needs - including regarding their own psychological well-being and survivors’ financial issues. Survivors further from diagnosis, unemployed survivors and single caregivers were more likely to report unmet needs. Barriers preventing survivors and caregivers accessing supportive services were highlighted, including (but not exclusive to) families not being aware of support available, location of services, and accessibility to information/support. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Understanding unmet needs and recognising what services are required is critical to improving survivor and caregiver quality of long-term survival.

The genomic landscape of teenage and young adult T-cell acute lymphoblastic leukemia.

BackgroundTreatment on risk adapted intensive pediatric protocols has improved outcome for teenagers and young adults (TYA) with T‐cell acute lymphoblastic leukemia (T‐ALL). Understanding the biology of disease in this age group and the genetic basis of relapse is a key goal as patients with relapsed/refractory disease have poor outcomes with conventional chemotherapy and novel molecular targets are required. This study examines the question of whether TYA T‐ALL has a specific biological‐molecular profile distinct from pediatric or adult T‐ALL.MethodsGenomic characterization was undertaken of a retrospective discovery cohort of 80 patients aged 15–26 years with primary or relapsed T‐ALL, using a combination of Genome‐Wide Human SNP Array 6.0, targeted gene mutation and promoter methylation analyses. Findings were confirmed by MLPA, real‐time quantitative PCR, and FISH. Whole Exome Sequencing was performed in 4 patients with matched presentation and relapse to model clonal evolution. A prevalence analysis was performed on a final data set of 1,792 individual cases to identify genetic lesions with age specific frequency patterns, including 972 pediatric (1–14 years), 439 TYA (15–24 years) and 381 adult (≥25 years) cases. These cases were extracted from 19 publications with comparable genomic data identified through a PubMed search.ResultsGenomic characterization of this large cohort of TYA T‐ALL patients identified recurrent isochromosome 7q i(7q) in our discovery cohort (n = 3). Prevalence analysis did not identify any age specific genetic abnormalities. Genomic analysis of 6 pairs of matched presentation – relapsed T‐ALL established that all relapses were clonally related to the initial leukemia. Whole exome sequencing analysis revealed recurrent, targetable, mutations disrupting NOTCH, PI3K/AKT/mTOR, FLT3, NRAS as well as drug metabolism pathways.ConclusionsAll genetic aberrations in TYA T‐ALL occurred with an incidence similar or intermediate to that reported in the pediatric and adult literature, demonstrating that overall TYA T‐ALL exhibits a transitional genomic profile. Analysis of matched presentation – relapse supported the hypothesis that relapse is driven by the Darwinian evolution of sub‐clones associated with drug resistance (NT5C2 and TP53 mutations) and re‐iterative mutation of known key T‐ALL drivers, including NOTCH1.

Processes of care and survival associated with treatment in specialist teenage and young adult cancer centres: results from the BRIGHTLIGHT cohort study

ObjectiveSurvival gains in teenagers and young adults (TYA) are reported to be lower than children and adults for some cancers. Place of care is implicated, influencing access to specialist TYA...

Teenagers and Young Adults with Cancer: An Exploration of Factors Contributing to Treatment Adherence.

This systematic appraisal explores the literature surrounding treatment adherence in teenagers and young adults (TYAs) with cancer, with the aim of identifying influential factors that could affect adherence rates. This area is particularly important due to the increased risk of relapse and death associated with nonadherent behavior. In addition, TYAs are found to be the age group least likely to adhere to medical regimes. A comprehensive review of the literature was conducted and seven studies met the inclusion criteria, the articles were then critiqued using a data extraction form and eight themes were generated and discussed. This review highlights the complexities and difficulties in measuring adherence, as well as the key factors affecting adherence, before identifying implications for practice. Good communication and relationships are crucial between all parties involved in TYAs’ care including the patients, professionals, parents, and peers. A model of adherence was adapted on the basis of the result of the systematic review, other literature pertaining to adherence in TYAs, and the clinical experience of the authors. Personal factors and external factors, along with treatment factors and interactions with the system all have an effect on the patient's response or ability to adhere. It is apparent that there is a need for more high-quality qualitative and quantitative research in this area, with an emphasis on finding interventions that directly improve adherence specific to this age group.

Strategies for improving access to clinical trials by teenagers and young adults with cancer: A qualitative study of health professionals' views.

Few teenagers and young adults (TYA) with cancer participate in clinical trials. Lack of opportunity has been identified as a major barrier. We canvassed health professionals' views on how TYA's access to trials might be improved. We interviewed 35 professionals with responsibility for delivering or facilitating cancer care and/or clinical trials. We analysed data using a qualitative descriptive approach. Interviewees viewed improving TYA's access to trials as challenging, but possible. They reframed the problem as one of rare disease and surmised that modifying the organisation, administration and resourcing of research (and care) might expand opportunities for both TYA and other patients with low volume conditions. Proposals coalesced around four themes: consolidating the pool of patients; streamlining bureaucratic requirements; investing in the research workforce; and promoting pragmatism in trial design. Accounts suggest there is scope to improve access to trials by TYA with cancer and other patients with rare diseases. Though re-configuring care, research and resource frameworks would present substantial challenges, doing nothing would also have costs. Change will require the support of a range of stakeholders, and agreement as to the best way forward. Further work, such as priority setting exercises, may be necessary to reach a consensus.