Rachel Taylor

University College London Hospitals NHS Foundation Trust | uclh · CNMAR

Objectives The BRIGHTLIGHT cohort study was the national evaluation of cancer services for teenager and young adults (TYA). This was analysis of free-text survey data to better understand their experiences of cancer care. Design Cohort study Setting National Health Service hospitals delivering cancer care in England Participants 830 young people...

Abstract Purpose The COVID-19 pandemic resulted in immense pressure on healthcare workers (HCWs) and healthcare systems worldwide. The current multi-centre evaluation sought to explore the association between coping behaviours and levels of psychological distress among HCWs working during the initial onset of COVID-19. Design/methodology/approach...

Background: Leadership during the COVID-19 pandemic often manifested as a command-and-control style of leadership which had detrimental emotional impacts on staff, particularly the nursing workforce. Leadership can have detrimental effects on staff wellbeing, or it can greatly boost their ability to handle a crisis. We sought to explore the interre...

Introduction. Ambulatory Care (AC), where patients receive inpatient cancer treatment on an outpatient basis, was introduced into the United Kingdom (UK) National Health Service (NHS) in 2004. Although now well established within some services, the development of AC across the NHS is yet to be described. We report findings of a scoping review that...

Background: Leadership during the COVID-19 pandemic often manifested as a command-and-control style of leadership which had detrimental emotional impacts on staff particularly the nursing workforce. Organisational responsibility for staff wellbeing would be necessary in another pandemic and leadership emerged as a key indicator of the overall healt...

Fear of cancer recurrence (FCR) is a persistent concern among those living with cancer and is associated with a variety of negative psychosocial outcomes. However, people with sarcoma have been underrepresented within this area of research. We aimed to determine the prevalence of FCR experienced by people with sarcoma in the United Kingdom and expl...

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 approac...

Background: Treatment of soft tissue sarcoma frequently involves extensive surgery, loss of mobility, and complex rehabilitation programs. Poorer patient-reported outcomes are reported in comparison to those from patients with other cancer types. Understanding patient experience is therefore important to support patients and improve care. Objecti...

Background: With increasing demand for nursing services worldwide, the onus is on healthcare systems to implement measures to improve retention. The DAISY Award was designed to celebrate nursing with the suggestion that it may improve staff retention. Aim: To describe the experience and impact of winning the DAISY Award. Method: Data were coll...

Aims: This article reports the results of a scoping review to identify initiatives for improving recruitment and retention of nurses in healthcare and ascertain their effectiveness. Background: The global shortage of nurses has results in greater competition for vacant posts and an increased need to retain existing post holders. While there are...

Communication within healthcare settings is often a subject of contention for patients’ families at the best of times; however, contention was greatly magnified in the United Kingdom by restrictions on hospital visitations during the early stage of the COVID-19 pandemic. To support communication between families and patients, a central London hospi...

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...

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-struct...

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...

Background The specific challenges experienced by the nursing and midwifery workforce in previous pandemics have exacerbated pre-existing professional and personal challenges, and triggered new issues. We aimed to determine the psychological impact of the COVID-19 pandemic on the UK nursing and midwifery workforce and identify potential factors ass...

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...

Aims The overall aim of this evaluation was to look at the impact of the changes in working practices during the pandemic on nurses. This secondary analysis provided an evaluation of virtual care and being able/required to work from home. Design This was secondary analysis of an evaluation using semi-structured interviews. Methods Conducted at a...

Purpose Evidence suggests that the patient-reported outcome (PRO) content of cancer trial protocols is frequently inadequate and non-reporting of PRO findings is widespread. This qualitative study examined the factors influencing suboptimal PRO protocol content, implementation, and reporting, and use of PRO data during clinical interactions. Metho...

Aims: The overall aim of this evaluation was to look at the impact of the changes in working practices during the pandemic on nurses. This secondary analysis provided an evaluation of virtual care and being able/required to work from home. Design: This was secondary analysis of an evaluation using semi-structured interviews. Methods: Conducted at a...

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...

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...

Objectives: During the first wave of COVID-19 heavy restrictions were placed on hospital visitations in the United Kingdom. To support communication between families and patients a central London hospital introduced the role of the Family Liaison Officer. Communication within healthcare settings is often the subject of contention, particularly for...

Background Patient-reported outcomes (PROs) are used in clinical trials to assess the effectiveness and tolerability of interventions. Inclusion of participants from different ethnic backgrounds is essential for generalisability of cancer trial results. PRO data collection should include appropriately translated patient-reported outcome measures (P...

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...

Purpose: In England, specialist cancer services for adolescents and young adults (young people) aged 15-24 are provided in 13 specialist units, with additional care provided in child and adult cancer units in the region. As a result of specialization, health care professionals (HCPs) have refined their competence, to deliver holistic care that has...

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...

Objectives This study explored factors that play a role in psychological adaptation and recovery of young people with sarcoma. Design Qualitative study. Setting National Health Service hospitals in the UK. Methods Using purposive sampling, participants were recruited for semistructured interviews over the telephone or face to face in order to an...

Objectives In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children’s cancer services. We present the first prosp...

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...

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...

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...

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...

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...

Aim There has been a welcome trend toward seperate services for young people. This has been in direct response to young people consistently calling for dedicated hospital services for their age group. Despite this trend, specialist cancer units for adolescents and young adults (AYA) only provide care for approximately half of AYA in England, the re...

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...

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...

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...

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...

Introduction: Advance care planning is a means for patients to communicate their wishes, fears and desires for future health decisions should they lose the ability to consider or communicate these. Despite being supported by governments and healthcare leaders, uptake amongst the general population remains low. Nurses play a crucial role in promoti...

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...

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...

Introduction Growing consensus describes it as “inappropriate” to deliver care to young people in either child or adult environments of care or in settings not equipped to meet their psychosocial needs. The aim of this review was to identify what patient and professional experience tells us about the culture of care specific to young people receivi...

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...

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...

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...

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...

Background: Patient-reported outcomes (PROs) are captured within cancer trials to help future patients and their clinicians make more informed treatment decisions. However, variability in standards of PRO trial design and reporting threaten the validity of these endpoints for application in clinical practice. Methods: We systematically investiga...

Objectives To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16–40 years and how this might affect care. Design We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and wo...

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...

Multidisciplinary team meetings (MDTM) provide a regular forum for cancer teams to convene and discuss the diagnostic and treatment aspects of patient care. For some rare cancers, MDTMs may also occur at national level to pool expertise and to ensure more consistent decision‐making. One such national MDTM exists in the UK for patients with a diagno...

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...

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...

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...

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...

Background: The post-qualifying and preceptorship period in nursing has been well-researched, however, there is limited evidence about the immediate period before qualifying. Aim: To explore the experiences of role transition of London-based final placement (FP) children's nursing students and to identify what support is required for future coho...

Background: The period of transition from pediatric to adult services represents a time when young people need support, information, and appropriate care in order to successfully move. It is a period that is associated with nonadherence and disengagement with care. Objective: To explore the experiences of young liver transplant recipients transi...

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...

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...

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...

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...

Introduction Patient-reported outcomes (PROs) are increasingly included within cancer clinical trials. If appropriately collected, analysed and transparently reported, these data might provide invaluable evidence to inform patient care. However, there is mounting indication that the design and reporting of PRO data in cancer trials may be suboptima...

Purpose: Digital technology has the potential to support teenagers and young adults (TYAs) with cancer from the onset of their disease into survivorship. We aimed to establish (1) the current pattern of use of TYA digital technologies within our service-user population, and (2) their preferences regarding digital information and support within the...

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...

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...

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...

Background: The process and preparation of moving from child to adult services (transition) is a challenging period of time for young people and represents significant changes in care and support systems. The proliferation of mobile phone applications for health purposes suggests that it is an area for further investigation. Objective: The revie...