A5078861203- Childhood Cancer Survivors' Quality of Life
- Adolescent and Pediatric Healthcare
- Family Support in Illness
- Palliative Care and End-of-Life Issues
- Acute Lymphoblastic Leukemia research
- Cancer survivorship and care
- Ethics and Legal Issues in Pediatric Healthcare
- Global Cancer Incidence and Screening
- Sarcoma Diagnosis and Treatment
- COVID-19 and Mental Health
- Ethics in Clinical Research
- Healthcare professionals’ stress and burnout
- Glioma Diagnosis and Treatment
- Health Systems, Economic Evaluations, Quality of Life
- Testicular diseases and treatments
- COVID-19 and healthcare impacts
- Human-Automation Interaction and Safety
- Management of metastatic bone disease
- Participatory Visual Research Methods
- Economic and Financial Impacts of Cancer
- Air Traffic Management and Optimization
- Advances in Oncology and Radiotherapy
- BRCA gene mutations in cancer
- Mental Health and Patient Involvement
- Cancer therapeutics and mechanisms
University College London
2016-2025
University College London Hospitals NHS Foundation Trust
2016-2025
University College Hospital
2008-2024
Royal London Hospital
2022-2023
MRC Clinical Trials Unit at UCL
2023
Stanmore College
2022
Transnational Press London
2022
National Cancer Research Institute
2009-2021
Cancer Research UK
2009-2019
Atlas Copco (United States)
2019
Background: There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated such care are not defined. Patient experience patient-reported as quality of life gaining importance. Nevertheless, there a lack theoretical basis patient involvement in surveys for people. Objective: We previously proposed conceptual model the lived cancer. aimed to refine this adding areas were lacking or underreported. The framework will inform...
Objectives To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify prioritise research questions inform decisions funders support the case for with this unique cancer population. Design James Lind Alliance Priority Setting Partnership. UK health service community. Methods A steering group oversaw initiative partner organisations were recruited. Unanswered collected in an online survey. Evidence searching verified uncertainties. An...
Poor inclusion rates into clinical trials for teenagers and young adults (TYA; aged 13–24 years) have been assumed but not systematically investigated in England. We analysed accrual (AR) from 1 April 2005 up to 31 March 2007 National Cancer Research Network (NCRN) Phase III the commonest tumour types occurring TYA children: leukaemia, lymphoma, brain central nervous system, bone sarcomas male germ cell tumours. AR 2005–2007 were 43.2% patients 10–14 years, 25.2% 15–19 13.1% 20–24 years...
Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end–points. Surveys are generally accepted appropriate methodology capture patient experience. No validated surveys exist specifically for adolescents and young adults (AYA) aged 13–24 years at diagnosis with cancer. This paper describes early work undertaken develop validate a descriptive survey AYA cancer that encompasses both their age-related issues. We aimed develop,...
BackgroundAdolescents and young adults (AYAs) are thought to experience prolonged intervals cancer diagnosis, but evidence quantifying this hypothesis identifying high-risk patient subgroups is insufficient. We aimed investigate diagnostic timeliness in a cohort of AYAs with incident cancers identify factors associated variation timeliness.MethodsWe did cross-sectional analysis the BRIGHTLIGHT cohort, which included aged 12–24 years recruited within an average 6 months from new primary...
Purpose: The Internet is a fully integrated part of young people's life and it pivotal that online resources are developed to maximize the potential support those living with beyond cancer. We sought understand how people cancer diagnosis use what extent information needs met by existing resources. Patients methods: This was participatory action research study involving 21 participating in workshops individual interviews. Participants aged 13–24 years were diagnosed range cancers. Young on...
Objective The aim of this study is to explore the experiences patients with primary bone cancer. Design Qualitative design using semistructured interviews and focus groups. Setting Hospitals across UK recruitment through sarcoma charities support Methods Semistructured telephone/face-to-face groups a purposive sample 26 participants. Data were analysed Framework Analysis. Participants Patients (n=26) cancer aged 13–77 years. majority male (69%), white (85%); diagnosed within 4 years (54%);...
Background The COVID-19 pandemic has drastically increased demands on healthcare workers (HCWs) leaving them vulnerable to acute psychological distress, burnout and post-traumatic stress. In response, supportive services in a central London hospital mobilised mental health support specifically for HCWs. Aims This rapid evaluation assessed HCW welfare during the phase of their use made available. Methods During (April May 2020) all staff working were invited complete an online survey...
Patient and public involvement (PPI) is central to research service planning. Identifying effective, meaningful ways of challenging. The cohort study 'Do specialist services for teenagers young adults with cancer add value?' follows people three years, examining outcomes associated care. Participant retention in longitudinal can be problematic potentially jeopardising completion. Maximising awareness through high impact branding publicity may improve retention. Study names are typically...
Abstract Background The end of active treatment is a period high stress for young people with cancer, but limited literature exists about their information and support needs during this phase. This study aimed to understand the how these are currently being met, best provide at treatment. Methods was multi-stage, mixed methods exploring experience from perspectives people, healthcare professionals caring them. Semi-structured interviews were undertaken professionals, which informed survey...
Abstract Background The association of diagnostic intervals and outcomes is poorly understood in adolescents young adults with cancer (AYA). We investigated associations between health-related quality life (HRQoL), anxiety depression a large AYA cohort. Methods Participants aged 12–24 completed interviews post-diagnosis, providing data on experiences the patient-reported (PROs) HRQoL, depression. Demographic information were obtained from clinical national records. Six considered....
AYAs face unique psychosocial challenges compared to younger children and older adults. Little published data exists about symptoms of psychological distress in AYAs, particularly large cohorts over time. This study aimed (1) explore relationships between variables known impact mental health, (2) examine time, (3) consult with a patient public involvement group (Young Advisory Panel, YAP) contextualize the results. Secondary analyses were conducted from multicentre longitudinal cohort study,...
Purpose: To identify key components of a specialist teenager and young adult (TYA) cancer unit from the perspective people health professionals. Patients methods: A facilitated workshop was held in England at which participants prioritized 15 core features identified literature review. Themes were transferred onto cards organized using pyramid. Notes made discussion how decisions reached. The exercise repeated survey patient conference. Data analyzed by weighting ranked position content...
GIBSON F., FERN L., WHELAN J., PEARCE S., LEWIS I.J., HOBIN D. & TAYLOR R.M. (2012) European Journal of Cancer Care21, 330–339 A scoping exercise favourable characteristics professionals working in teenage and young adult cancer care: 'thinking outside the box' to define preferred competencies involved (TYA) care. Data were generated during two workshops with health professionals. In groups, they ranked skills, knowledge attitudes, previously identified through a literature search, onto...
Teenage and young adult cancer care in England is centralized around 13 principal treatment centers, alongside linked "designated" hospitals, following recommendations that this population should have access to age-appropriate care. The term has not yet been defined; it however the explicit used when communicating nature of specialist aim study was develop an evidence-based, contextually relevant operational model defining for teenagers adults with cancer.A mixed-methods conducted comprising...
The reasons why teenagers and young adults (TYA) with cancer do, or do not, participate in clinical trials is not wholly understood. We explored the perceptions experiences of people bone cancer, health professionals involved their care, regard to participation two trials. conducted semi-structured interviews using narrative inquiry 21 aged 15–24 years 18 professionals. New understandings emerged about of, factors that influence in, These include importance design trial, communicating an...
Objective Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease treatment-related symptoms cause short long-term psychosocial effects. Little is known about how young cope the impact its treatment on daily routines their strategies to manage challenges treatments. We aimed determine describe these through social media site. Methods Using principles virtual ethnography watching videos site we gathered data from describing...