Lorna Fern

Lorna Fern
University College London Hospitals NHS Foundation Trust | uclh · Department of Oncology

About

87
Publications
7,193
Reads
How we measure 'reads'
A 'read' is counted each time someone views a publication summary (such as the title, abstract, and list of authors), clicks on a figure, or views or downloads the full-text. Learn more
1,197
Citations

Publications

Publications (87)
Article
Background The aim was to determine how the learning about protective factors from previous pandemics was implemented and the impact of this on nurses’ experience. Methods Secondary data analysis of semistructured interview transcripts exploring the barriers and facilitators to changes implemented to support the surge of COVID-19 related admission...
Article
Full-text available
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-diagnos...
Article
Full-text available
Background When cancer occurs in teenagers and young adults, the impact is far beyond the physical disease and treatment burden. The effect on psychological, social, educational and other normal development can be profound. In addition, outcomes including improvements in survival and participation in clinical trials are poorer than in younger child...
Article
Full-text available
Background: Oral etoposide is commonly used in palliative treatment of childhood and young adult cancer without robust evidence. We describe a national, unselected cohort of young people in England treated with oral etoposide using routinely collected, population-level data. Methods: Patients aged under 25 years at cancer diagnosis (1995-2017) w...
Article
Full-text available
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 youn...
Article
Full-text available
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 psyc...
Preprint
Full-text available
Aims: To determine how the learning about protective factors from previous pandemics were implemented and the impact of this on nurses experience. Background: The COVID-19 pandemic led to systemic change within healthcare settings and demands placed on frontline nurses has been overwhelming. Lessons learned from previous pandemics indicate that cle...
Article
Full-text available
Objective Survival 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 professionals and research. Consequently, age-appropriate specialist cancer care is advocated for TYA although systematic investigation of associated outco...
Article
Background MicroRNAs from the miR-371~373 and miR-302/367 clusters, particularly miR-371a-3p, are promising biomarkers for blood-based diagnosis and disease monitoring of malignant germ cell tumors (GCTs) and are nearing clinical implementation. These biomarkers have superior sensitivity and specificity compared with current markers alpha-fetoprote...
Article
Full-text available
Background: BRIGHTLIGHT is a national evaluation of cancer services for young people aged 13-24 years in England. It is a mixed methods study with six interlinked studies aiming to answer the question: do specialist cancer services for teenagers and young adults add value? http://www.brightlightstudy.com/. Young people have been integral to study...
Article
Full-text available
Importance: Evidence regarding the presenting symptoms of cancer in adolescents and young adults can support the development of early diagnosis interventions. Objective: To examine common presenting symptoms in adolescents and young adults aged 12 to 24 years who subsequently received a diagnosis of cancer and potential variation in time to help...
Article
Full-text available
Purpose: The aim of the study was to develop a patient-reported outcome measure for patients with sarcoma-the Sarcoma Assessment Measure (SAM). Methods and results: The systematic development of SAM included a three-stage, mixed-methods study using semi-structured interviews, focus groups and questionnaires, with all stages involving patients fr...
Article
Full-text available
Background: The end of active treatment is a period of 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 needs of young people with cancer, how these needs are currently being met, and how best to provide information and support at...
Article
Background: The end of active cancer treatment is described as a stressful period for adolescents and young adults (AYAs). However, research evidence describing the experience of AYAs as they transition from active treatment into follow-up care is scarce. Objective: We aimed to understand AYAs' experiences within the first 12 months of ending ac...
Article
Background: Teenage and young adult cancer services in England are centralized in 13 principal treatment centers (TYA-PTC). These "specialist services" are designed to support caregivers as well as young people. Objectives: To evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if they had all/so...
Conference Paper
Aims Adolescents and young adults (AYA) diagnosed with cancer, broadly those aged 16-29, are known to have distinctive psychosocial and medical needs related to age and transitioning through significant life milestones at the time of diagnosis/treatment. Forming a sexual identity is a key developmental task during this phase, thus understanding the...
Article
Background Treatment of sarcoma often involves long-term hospitalisation, extensive surgery, loss of mobility and complex rehabilitation programmes. Subsequently, poorer patient-reported outcomes are recorded in comparison to patients with other cancer types. A national patient experience survey shows that enhanced levels of reassurance are obtaine...
Article
Background Teenage and young adult cancer services in England are centralised in 13 principal treatment centres (TYA PTC). We sought to evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if cancer care was provided in a TYA PTC. Methods Participants in the cohort study of young people with cancer...
Article
Background The end of active treatment is known to be a period of high stress in young people’s cancer timeline but little is known about young people’s experiences in this transition phase. This study aimed to understand the experiences and needs of young people at the end of treatment (EoT), how these are currently being met, and how best to prov...
Article
Full-text available
Objective The aim of this study is to explore the experiences of patients with primary bone cancer. Design Qualitative study design using semistructured interviews and focus groups. Setting Hospitals across the UK and recruitment through UK sarcoma charities and support groups. Methods Semistructured telephone/face-to-face interviews and focus g...
Article
Full-text available
Purpose: The internet is integral to young people, providing round-the-clock access to information and support. Young people with cancer report searching for online information and support. What they search for and why varies across their timeline and is mainly driven by negative emotion. We sought to understand how health care professionals (HCPs...
Article
Full-text available
Objectives To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population. Design James Lind Alliance Priority Setting Partnership. Setting UK health service...
Article
Full-text available
Objective International recognition of the unique needs of young people with cancer is growing. Many countries have developed specialist age-appropriate cancer services believing them to be of value. In England, 13 specialist principal treatment centres (PTCs) deliver cancer care to young people. Despite this expansion of specialist care, systemati...
Conference Paper
Full-text available
Background Treatment of sarcoma often involves long-term hospitalisation, extensive surgery, loss of mobility, complex rehabilitation programmes, and is in many cases accompanied by low expectations of survival. Subsequently, poorer patient-reported outcomes are recorded in comparison to patients with other cancer types. Studies examining psychosoc...
Conference Paper
Full-text available
Introduction One of the ‘arts’ of age-appropriate care for adolescents and young adults (AYA) with cancer is a holistic approach to delivering care, which relies on the knowledge, skills and attitudes of all healthcare professionals (HCP). Aim The paper aims to describe the five ‘Es’ enabling holistic competence. Methods Data were collected acros...
Conference Paper
Full-text available
Background The internet is integral to young people (YP) „providing round-the-clock access to information and support. We previously identified how, when, and why YP use online resources and highlighted variation in how these are introduced by their healthcare team. Aims We sought to understand how healthcare professionals (HCP) perceived online i...
Article
Full-text available
Background: Previous reviews of outcomes in specific sarcoma populations suggest patients have poor quality of life. In most of these reviews, there is a predominant focus on physical function rather than psychosocial outcome. The aim of this review was to describe the psychosocial impact of diagnosis and treatment on patients with all types of sa...
Article
Full-text available
PurposeLow recruitment of adolescents and young adults in cancer clinical trials is widely reported and may be linked to limited improvements in survival. Research to date does not adequately explain all underlying reasons for poor trial accrual. This paper reports health professional perceptions of communicating with adolescents and young adults w...
Article
Full-text available
Plain English summary Young people with cancer are often described as ‘hard to reach’, ‘difficult to engage’ and/or ‘vulnerable’. Consequently, they are often over looked for patient and public involvement activities. We set out to involve young people with cancer to work as co-researchers in the design of the largest ever study of young people wit...
Article
Full-text available
Introduction The end of active treatment is a stressful period for adolescents and young adults (AYA), but little is known about AYA experiences at this time point. The aim was to describe the issues young people experienced and identify interventions to support AYA at the end of treatment. Methods We conducted a rapid review of published primary...
Article
Adolescent and young adult (AYA) oncology research is steadily but perceptibly entering a more mature phase. Adolescent and Young Adult‐specific services have existed for almost 30 years, embedded in England since the National Institute for Health and Care Excellence (NICE) published guidance in 2005 directing where and how AYA aged 16–24 years wer...
Article
Full-text available
Purpose: 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 age-appropriate care has not yet been defined; it is however the explicit term used when communica...
Article
Full-text available
Purpose: The Internet is a fully integrated part of young people's life and it is pivotal that online resources are developed to maximize the potential of the Internet to support those living with and beyond cancer. We sought to understand how young people with a cancer diagnosis use the Internet and to what extent information and support needs ar...
Article
Full-text available
Background Adolescents and young adults (AYA) with cancer are thought to experience prolonged diagnostic intervals but robust evidence quantifying such associations is lacking. Aim To examine diagnostic timeliness in a cohort of young people, identifying sociodemographic factors and cancer sites associated with variation in timeliness. Method We...
Article
Underrepresentation of young people in cancer research is an international phenomenon and may contribute to poorer outcomes. We sought to identify systematically tested interventions and strategies to improve recruitment. The review identified 13 papers. The following four themes emerged: trial availability/regulatory factors; service configuration...
Article
Purpose: Discovering sexuality and romantic relationships are important development milestones in adolescence and young adulthood. A cancer diagnosis imposes obstacles for young people such as changes in their sexual function due to the disease and/or side effects of treatment, body image concerns, and interpersonal relationship difficulties. This...
Chapter
Teenagers and young adults (TYA) are less likely to be entered into cancer clinical trials and research compared to children and some older adults. This pattern of lower inclusion rates is reported internationally regardless of healthcare system and is thought to be related to suboptimal improvements in outcomes for this group. This Chapter describ...
Article
Background Adolescents and young adults (AYAs) are thought to experience prolonged intervals to cancer diagnosis, but evidence quantifying this hypothesis and identifying high-risk patient subgroups is insufficient. We aimed to investigate diagnostic timeliness in a cohort of AYAs with incident cancers and to identify factors associated with variat...
Chapter
Participatory research that utilises creative methods has become central to understanding children and young people and how they experience the world they live in. We argue here that ‘the interview’, used appropriately, is a useful method, an important member in the researchers’ ‘toolbox’. This chapter offers reflections on the challenges and advan...
Chapter
The concept of the ‘adolescent and young adult (AYA) gap’ in relation to recruitment to cancer clinical trials was first described in 1997. The ‘AYA gap’ refers to the association between lesser survival gains and poorer recruitment to cancer clinical trials for this group. Since then, many countries have reported lesser involvement of AYAs in canc...
Article
Full-text available
Objectives BRIGHTLIGHT is a national evaluation of cancer services for teenagers and young adults in England. Following challenges with recruitment, our aim was to understand more fully healthcare professionals’ perspectives of the challenges of recruiting young people to a low-risk observational study, and to provide guidance for future recruitmen...
Article
Full-text available
Objectives To identify and describe the outcomes and facilitating processes of participation at ‘Find Your Sense of Tumour’ (FYSOT), a 2-day residential programme/conference for young people with cancer, from the perspective of professionals attending and patient representatives. Design Case study. Setting Observation of the ‘Find Your Sense of T...
Article
Purpose: To maximize retention of participants in a longitudinal cohort study, we sought to understand young peoples' views about barriers and facilitators to continuing study participation. Methods: Ten young people with a previous cancer diagnosis aged 15-24 participated in a 1 day workshop. The workshop used participatory methodology consisti...
Article
Introduction: The challenges of achieving timely cancer diagnosis in adolescents and young adults are recognised. However, contributing factors and associated clinical and psychosocial outcomes are poorly understood. Areas covered: We present a scoping review of existing evidence into time intervals to diagnosis and potential mechanisms influencing...
Article
Full-text available
BRIGHTLIGHT is a national evaluation of teenage and young adult cancer services in England. Data are collected five times over three years from 830 young people using a bespoke survey. Additional data are collected from carers, clinical notes and National Health Service (NHS) registries; consequently, BRIGHTLIGHT is the most comprehensive data set...
Article
The aims of this article are to describe the ongoing development of adolescent and young adult (AYA) cancer services within the European Union (EU), and to develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling techniqu...
Article
The aims of this article are to describe the ongoing development of adolescent and young adult (AYA) cancer services within the European Union (EU), and to develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling techniqu...
Article
Full-text available
Objectives To describe our experience of using a confidentiality waiver (Section 251) in the National Health Service (NHS) Act to identify and recruit potential research participants to a cohort study and consider its use in a wider research context. Design Methodological discussion. Setting NHS Trusts in England. Methods We established a resear...
Article
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 and experiences of young people with bone cancer, and health professionals involved in their care, with regard to participation in two clinical trials. We conducted semi-structured intervie...
Article
PURPOSE: The purpose of this study was to elicit young people's views on access and participation in cancer research. METHODS: Eight young people aged 18-25 years with a previous cancer diagnosis aged 15-24 participated in a one day workshop utilising participatory methodology. The workshop consisted of four exercises: role play/scene setting; focu...
Article
Objective: Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease and treatment-related symptoms cause short and long-term physical and psychosocial effects. Little is known about how young people cope with the impact of cancer and its treatment on daily routines and their strateg...
Article
Full-text available
Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis wit...
Article
Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis wit...
Article
Full-text available
Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study ‘Do specialist services for teenagers and young adults with cancer add value?’ follows young people for three years, examining outcomes associated with specialist care. Participant...
Article
Under-representation of teenagers and young adults in clinical trials for cancer is acknowledged internationally and might account for the lower survival gains noted for this group. Little research has focused on strategies to increase participation of teenagers and young adults in clinical trials. We applied a conceptual framework for barriers to...
Article
The unique psychosocial needs of teenagers and young adults (TYAs) with cancer have been recognized for some time in the United Kingdom. The non-profit Teenage Cancer Trust pioneered dedicated units for TYAs in 1990, and by 2005, the United Kingdom National Institute for Health and Clinical Excellence (NICE) issued healthcare policy advocating age-...
Article
Full-text available
In Canada, adolescent survivors of cancer are treated mainly at pediatric centers, while young adults are treated at adult centers. Both care environments are reported as being inappropriate and do not fulfill the needs of adolescents and young adults (AYA). The purpose of this study was to investigate supportive care needs (SCN) of AYA survivors o...
Article
Background: There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient i...
Article
The end of life care needs of young adults, aged 16-40 years, are poorly described in current literature and no specific guidance exists for professionals that takes account of factors such as rarity, cancer type, heterogeneity and influence of life stage. We will use using realistic evaluation to understand: A. Core components in pathways of care...
Conference Paper
Background Inclusion in randomised cancer trials is considered the optimal standard of cancer care [1]. Young people are under represented in bone cancer trials in the England [2]. This may be associated with lesser improvements in survival for this group compared to children. This study explores young people's perceptions of entry into two bone sa...
Article
Objectives: To systematically identify and analyse published research exploring teenage and young adult experience of cancer to inform the development of a patient-reported outcome survey intended to explore if a correlation exists between specialist cancer care and quality of life for young people with cancer. Design: Systematic review and meta...