481 results on '"Taylor, Rachel M."'
Search Results
152. Enteral nutrition in critical illness: part one
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Taylor, Rachel M, primary and Baker, Alastair J, additional
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- 1999
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153. Nutrition knowledge in paediatric intensive care
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Taylor, Rachel M, primary and Baker, Alistair, additional
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- 1997
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154. Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis.
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Taylor, Rachel M., Pearce, Susie, Gibson, Faith, Fern, Lorna, and Whelan, Jeremy
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QUALITATIVE research , *CANCER patient psychology , *CINAHL database , *DRUG toxicity , *EXPERIENCE , *PSYCHOLOGY information storage & retrieval systems , *MEDLINE , *NURSING models , *RESEARCH funding , *TUMORS in children , *SYSTEMATIC reviews , *THEORY , *AFFINITY groups , *SOCIAL support , *THEMATIC analysis , *META-synthesis , *ADOLESCENCE - Abstract
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-synthesis. Data sources: Medline, CINAHL Plus and PsycInfo were searched for literature published between 1987 and 2011. Review methods: Search terms included those for: population (e.g. teen, young adult); intervention (e.g. cancer); outcome (e.g. experience); and study type (e.g. qualitative). Inclusion criteria: adolescents and young adults were both represented; diagnosis of cancer; published in English; and used qualitative methods to report an aspect of the cancer experience. Studies were excluded if they were reporting: palliative care experience; secondary data; or proxy views, i.e. parent or health professional perspective. Methodological quality was assessed using Cesario criteria and metasynthesis involved deconstruction and decontextualising findings to identify common themes. Results: Three hundred and fifteen studies were identified, 17 fulfilled the inclusion criteria. Of these, most (59%), were assessed as being high quality, none were rated poor. Nine common themes were identified: psychosocial function, importance of peers, experience of healthcare, importance of support, impact of symptoms, striving for normality, impact of diagnosis, positive experiences, and financial consequences. Conclusions: The conceptual model developed from the meta-synthesis depicts the mediators and consequences of cancer care that impact on young people's quality of life after a cancer diagnosis. The model highlights areas that require further exploration. [ABSTRACT FROM AUTHOR]
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- 2013
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155. Exploring the work of nurses who administer chemotherapy to children and young people.
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Gibson, Faith, Shipway, Lisa, Aldiss, Susie, Hawkins, Jeanette, King, Wendy, Parr, Margaret, Ridout, Deborah, Verity, Rebecca, and Taylor, Rachel M.
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Abstract: Purpose of the research: To explore the knowledge, attitudes and beliefs of nurses who administer chemotherapy to children and young people. Methods and sample: A national postal survey of nurses working within the 21 cancer centres in the United Kingdom and Ireland. The questionnaire included 25-items addressing the attitudes, beliefs and concerns regarding nurses’ roles, support mechanisms and educational preparation related to administration of chemotherapy. Results: In total 286/507 (56%) questionnaires were returned. The majority of nurses worked in inpatient +/-outpatient (78%) settings and most gave chemotherapy on a daily basis (61%). The median time working in oncology was 10 [range 0.5–32] years and time administering chemotherapy was 8 [0.1–32] years. Aspects of administration that caused the most worry included treatment side-effects, extravasation, dealing with allergic/anaphylactic reactions and knowledge deficits in colleagues. There was no significant difference in worry according to level of nurse education but those with an oncology qualification had less Knowledge-related worry (p = 0.05). There was no difference in attitude according to level of education or having an oncology qualification. There were significant correlations between time qualified, time working in oncology and the number of years administering chemotherapy and the worry domains (ranging from r = −0.14 to r = −0.24, p < 0.05); and attitude to chemotherapy (ranging from r = 0.12 to r = 0.26, p < 0.001). Conclusion: As anticipated nurses new to chemotherapy administration were initially anxious about the role and they worried about making a drug error. Education and support from colleagues appears to have a positive effect on reducing worry and increasing competence. [Copyright &y& Elsevier]
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- 2013
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156. Care coordination, consistency and continuity: the case of the key worker role in children's cancer care.
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Martins, Ana, Aldiss, Susie, Taylor, Rachel M, and Gibson, Faith
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OCCUPATIONAL roles , *PARENT attitudes , *WELL-being , *SPECIALTY hospitals , *FOCUS groups , *CHILDREN'S hospitals , *SOCIAL workers , *RESEARCH methodology , *INTERVIEWING , *QUANTITATIVE research , *CONTINUUM of care , *CANCER treatment , *QUALITATIVE research , *EXPERIENCE , *FAMILY attitudes , *SOCIOECONOMIC factors , *CASE studies , *QUESTIONNAIRES , *CHILD health services , *RESEARCH funding , *INTEGRATED health care delivery , *CANCER patient medical care , *CHILDREN - Abstract
The overall aim was to evaluate the key worker role across principal treatment centres for children with cancer in England, Wales and Scotland. Mixed-methods case study gathering data from multiple perspectives using questionnaires, interviews, focus groups and reports/performance documents over a two-year period. Framework approach was adopted to analyse transcripts and documentary data. Participants included: 22 nurse specialist key workers, 103 parents, 85 professionals and 10 children/young people. Qualitative and quantitative data were woven together, to best illuminate key worker services. Four main models of care were described as well as the context of care and process of care. Key working effectiveness centred around three pillars: care coordination; expert knowledge, experience and expertise; relationship. These were essential to improved family experience, emotional wellbeing, and delivery of individualized care closer to home. The role is complex and diverse, responding to local needs. Certain conditions, (e.g., high caseload) placed limits on enacting the three pillars, diminishing the positive experience of families. When they worked well, key workers reduced the fragmented nature of services and families placed great value on keeping the same key worker from diagnosis into long-term care. Retaining these roles, where already in place, or including, if not, we would recommend, factoring into budgets to sustain and expand such roles. [ABSTRACT FROM AUTHOR]
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- 2022
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157. Evaluation of the DAISY (Diseases Attacking the Immune SYstem) Award for recognising excellence in nursing.
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Williamson, Lauren, Burog, Walter, and Taylor, Rachel M
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MIDWIVES , *OCCUPATIONAL achievement , *CAREGIVER attitudes , *NURSES' attitudes , *EVALUATION of human services programs , *AWARDS , *ATTITUDES of medical personnel , *RESEARCH methodology , *MOTIVATION (Psychology) , *HOSPITAL health promotion programs , *INTERVIEWING , *PATIENTS' attitudes , *QUALITATIVE research , *HOSPITAL nursing staff , *PSYCHOSOCIAL factors , *RESEARCH funding , *EMPLOYEE retention - Abstract
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 collected through virtual semistructured interviews from award winners (n=4), nominees (n=4) and nominators (n=4). An analytical framework was developed to allow the responses of the three groups to be compared. Findings: Four major themes emerged from the responses: awareness of the DAISY Award; the nomination process, the impact on retention and winner benefits. Conclusion: Being nominated or winning a DAISY Award had a positive impact on nurses' feelings towards their role. This was a small evaluation in a single organisation, so the value of adopting the DAISY Award for recognising nurses' contributions to patient care merits further investigation, especially with regards to its effects on retention. [ABSTRACT FROM AUTHOR]
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- 2022
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158. A scoping review of strategies used to recruit and retain nurses in the health care workforce.
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Williamson, Lauren, Burog, Walter, and Taylor, Rachel M.
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HEALTH care industry , *OCCUPATIONAL achievement , *WORK environment , *CINAHL database , *SOCIAL support , *MEDICAL information storage & retrieval systems , *LEADERSHIP , *PROFESSIONAL employee training , *SYSTEMATIC reviews , *EMPLOYEE recruitment , *LABOR demand , *NURSING services administration , *LABOR supply , *NURSES , *LITERATURE reviews , *MEDLINE , *EMPLOYEE retention - Abstract
Aims: This article reports the results of a scoping review to identify initiatives for improving recruitment and retention of nurses in health care 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 a large number of publications discussing ways to improve recruitment and retention, the effectiveness of these needs to be established. Evaluation: Thirteen papers met the inclusion criteria. There was no literature identified focusing on recruitment and only one paper reported a formal evaluation of a retention initiative. Key issues: Five themes summarized the initiatives for retaining nurses: leadership and support, ongoing professional development, recognition, work environment and flexible scheduling. Conclusion: While strategies have been proposed to retain nurses, there is a dearth of evidence supporting the effectiveness of these. Implications for Nursing Management: Although there is a lack of evaluations of retention strategies, the review identified a number of initiatives that warrant consideration. With the launch of the National Health Service People Plan in England in 2021, which is recommending initiatives identified in this review without robust evidence, an integrated programme of research evaluating this is recommended. [ABSTRACT FROM AUTHOR]
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- 2022
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159. Care of the Patient With an Artificial Airway.
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Evers, Julianne M., Minton, Lori A., Webb, Chris, Taylor, Rachel M., and York, Nancy L.
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TRACHEOTOMY , *PATIENT care , *ENDOTRACHEAL tubes , *MEDICAL suction , *TRACHEA intubation , *PROFESSIONS , *ARTIFICIAL respiration , *LARYNGECTOMY , *NEBULIZERS & vaporizers , *AIRWAY (Anatomy) , *MEDICAL needs assessment , *NASOPHARYNX , *POINT-of-care testing , *EXTUBATION , *ORAL health , *ENDOTRACHEAL suctioning ,TRACHEOTOMY equipment - Abstract
Background: Artificial airways are essential in various clinical settings to maintain a patient's airway and provide necessary support for ventilation and oxygenation. These devices are commonly temporary and come in several types, each serving specific purposes. Understanding the indications, types, and proper care of artificial airways is crucial for health care professionals to ensure patients receive optimal care and prevent complications. Objective: This article aims to review the indications for using artificial airways and discuss the most commonly used types, including supraglottic airway devices, endotracheal tubes, tracheostomy tubes, and laryngectomy tubes. It also provides insights into the procedures involved in intubation and percutaneous tracheostomy and offers guidance on patient management, emphasizing assessment, oral care, suctioning, and humidification for patients with these airway devices. Conclusion: This article underscores the significance of understanding artificial airways, not just as a set of skills but as a commitment to patient welfare. Health care professionals who master the knowledge and care of these devices can significantly contribute to their patients' well-being and quality of life. [ABSTRACT FROM AUTHOR]
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- 2024
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160. A Prospective Observational Cohort Study for Newly Diagnosed Osteosarcoma Patients in the UK: ICONIC Study Initial Results.
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Childs, Alexa, Gerrand, Craig, Brennan, Bernadette, Young, Robin, Rankin, Kenneth S., Parry, Michael, Stevenson, Jonathan, Flanagan, Adrienne M., Taylor, Rachel M., Fern, Lorna, Heymann, Dominique, Vance, Filipa, Sherriff, Jenny, Singh, Saurabh, Begum, Rubina, Forsyth, Sharon L., Reczko, Krystyna, Sparksman, Kate, Wilson, William, and Strauss, Sandra J.
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OSTEOSARCOMA , *RESEARCH funding , *HUMAN beings , *SCIENTIFIC observation , *CANCER patients , *TUMOR markers , *LONGITUDINAL method , *QUALITY of life , *HEALTH outcome assessment , *COLLECTION & preservation of biological specimens - Abstract
Simple Summary: Treatment for osteosarcoma (OS) has remained largely unchanged over the past 25 years. This is due in part to the low incidence of the disease, which makes the design of and recruitment to clinical trials challenging. The aim of our ongoing study is to establish a platform for the recruitment of newly diagnosed OS patients across the UK, with corresponding collection of clinical and patient-reported outcome (PRO) data, as well as biospecimen sample collection. In Stage 1 of the study, we established the feasibility of patient recruitment and patient data and sample collection. In Stage 2, biological and clinical data will be correlated with outcomes to develop prognostic biomarkers and inform the development of future clinical trials. There has been little change to the standard treatment for osteosarcoma (OS) over the last 25 years and there is an unmet need to identify new biomarkers and novel therapeutic approaches if outcomes are to improve. Furthermore, there is limited evidence on the impact of OS treatment on patient-reported outcomes (PROs). ICONIC (Improving Outcomes through Collaboration in Osteosarcoma; NCT04132895) is a prospective observational cohort study recruiting newly diagnosed OS patients across the United Kingdom (UK) with matched longitudinal collection of clinical, biological, and PRO data. During Stage 1, which assessed the feasibility of recruitment and data collection, 102 patients were recruited at 22 sites with representation from patient groups frequently excluded in OS studies, including patients over 50 years and those with less common primary sites. The feasibility of collecting clinical and biological samples, in addition to PRO data, has been established and there is ongoing analysis of these data as part of Stage 2. ICONIC will provide a unique, prospective cohort of newly diagnosed OS patients representative of the UK patient population, with fully annotated clinical outcomes linked to molecularly characterised biospecimens, allowing for comprehensive analyses to better understand biology and develop new biomarkers and novel therapeutic approaches. [ABSTRACT FROM AUTHOR]
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- 2024
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161. Nutrition in Chronic Liver Disease: Pathogenesis and Management.
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Taylor, Rachel M. and Dhawan, Anil
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- 1999
162. Cancer incidence, treatment, and survival in the prison population compared with the general population in England: a population-based, matched cohort study.
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Lüchtenborg, Margreet, Huynh, Jennie, Armes, Jo, Plugge, Emma, Hunter, Rachael M, Visser, Renske, Taylor, Rachel M, and Davies, Elizabeth A
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PRISON population , *PROPORTIONAL hazards models , *COHORT analysis , *CARCINOMA in situ - Abstract
The growing and ageing prison population in England makes accurate cancer data of increasing importance for prison health policies. This study aimed to compare cancer incidence, treatment, and survival between patients diagnosed in prison and the general population. In this population-based, matched cohort study, we used cancer registration data from the National Cancer Registration and Analysis Service in England to identify primary invasive cancers and cervical cancers in situ diagnosed in adults (aged ≥18 years) in the prison and general populations between Jan 1, 1998, and Dec 31, 2017. Ministry of Justice and Office for National Statistics population data for England were used to calculate age-standardised incidence rates (ASIR) per year and age-standardised incidence rate ratios (ASIRR) for the 20-year period. Patients diagnosed with primary invasive cancers (ie, excluding cervical cancers in situ) in prison between Jan 1, 2012, and Dec 31, 2017 were matched to individuals from the general population and linked to hospital and treatment datasets. Matching was done in a 1:5 ratio according to 5-year age group, gender, diagnosis year, cancer site, and disease stage. Our primary objectives were to compare the incidence of cancer (1998–2017); the receipt of treatment with curative intent (2012–17 matched cohort), using logistic regression adjusted for matching variables (excluding cancer site) and route to diagnosis; and overall survival following cancer diagnosis (2012–17 matched cohort), using a Cox proportional hazards model adjusted for matching variables (excluding cancer site) and route to diagnosis, with stratification for the receipt of any treatment with curative intent. We identified 2015 incident cancers among 1964 adults (1556 [77·2%] men and 459 [22·8%] women) in English prisons in the 20-year period up to Dec 31, 2017. The ASIR for cancer for men in prison was initially lower than for men in the general population (in 1998, ASIR 119·33 per 100 000 person-years [95% CI 48·59–219·16] vs 746·97 per 100 000 person-years [742·31–751·66]), but increased to a similar level towards the end of the study period (in 2017, 856·85 per 100 000 person-years [675·12–1060·44] vs 788·59 per 100 000 person-years [784·62–792·57]). For women, the invasive cancer incidence rate was low and so ASIR was not reported for this group. Over the 20-year period, the incidence of invasive cancer for men in prison increased (incidence rate ratio per year, 1·05 [95% CI 1·04–1·06], during 1999–2017 compared with 1998). ASIRRs showed that over the 20-year period, overall cancer incidence was lower in men in prison than in men in the general population (ASIRR 0·76 [95% CI 0·73–0·80]). The difference was not statistically significant for women (ASIRR 0·83 [0·68–1·00]). Between Jan 1, 2012, and Dec 31, 2017, patients diagnosed in prison were less likely to undergo curative treatment than matched patients in the general population (274 [32·3%] of 847 patients vs 1728 [41·5%] of 4165; adjusted odds ratio (OR) 0·72 [95% CI 0·60–0·85]). Being diagnosed in prison was associated with a significantly increased risk of death on adjustment for matching variables (347 deaths during 2021·9 person-years in the prison cohort vs 1626 deaths during 10 944·2 person-years in the general population; adjusted HR 1·16 [95% CI 1·03–1·30]); this association was partly explained by stratification by curative treatment and further adjustment for diagnosis route (adjusted HR 1·05 [0·93–1·18]). Cancer incidence increased in people in prisons in England between 1998 and 2017, with patients in prison less likely to receive curative treatments and having lower overall survival than the general population. The association with survival was partly explained by accounting for differences in receipt of curative treatment and adjustment for diagnosis route. Improved routine cancer surveillance is needed to inform prison cancer policies and decrease inequalities for this under-researched population. UK National Institute for Health and Care Research, King's College London, and Strategic Priorities Fund 2019/20 of Research England via the University of Surrey. [ABSTRACT FROM AUTHOR]
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- 2024
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163. Is there scope to do better? Clinical communication with adolescents and young adults with cancer--A scoping review.
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Critoph, Deborah J., Cable, Maria, Farmer, Jessica, Hatcher, Helen M., Kuhn, Isla, Taylor, Rachel M., and Smith, Luke A. M.
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YOUNG adults , *TEENAGERS , *MEDICAL personnel , *RESEARCH questions , *RESEARCH personnel - Abstract
Introduction: How to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK-wide survey of young people with cancer's research priorities, communication was a striking cross-cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs. Methods: A literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions. Results: Three key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience. Conclusion: Supporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication. [ABSTRACT FROM AUTHOR]
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- 2024
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164. Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: insights from 10 years of user involvement.
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Taylor, Rachel M., Whelan, Jeremy S., Gibson, Faith, Morgan, Sue, and Fern, Lorna A.
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CANCER in young adults ,RESEARCH management ,RESEARCH methodology ,FEASIBILITY studies ,MEDICAL care research - Abstract
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 with cancer, called BRIGHTLIGHT. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people as co-researchers, collaborators, consultants and dissemination partners. We chronicle the key points of this 10-year journey, sharing our success, describing our challenges and the solutions we put in place; sharing also what worked and did not work. Here we share some of these experiences of involving young people in this research and offer some practical advice for those looking to do the same. Background Young people with cancer, broadly those aged 13–24 years at diagnosis, warrant special attention; physiological and psychological growth creates complex psychosocial needs which neither adult nor child systems are suitably designed to deal with. Resulting from these needs, they are often described as 'vulnerable', 'hard to reach' and 'difficult to engage', and consequently are often over looked for patient and public involvement/engagement (PPIE) roles. In our study 'BRIGHTLIGHT', we set out to evaluate whether specialist care for young people adds value, ensuring young people were central to our PPIE activities. We believe that BRIGHTLIGHT is unique as a very large study of young people with cancer which has successfully overcome the challenges of including young people in the research process so we are confident that they have influenced every aspect of study design, conduct and dissemination. Methods We chronicle a period of 10 years, over which we describe our approach and our methods to involving young people in PPIE activities in BRIGHTLIGHT. We describe the feasibility work, study set up, conduct and dissemination of our findings, and weave through our story of PPIE to illustrate its benefits. Through the narration of our experience we highlight significant points that both influenced and changed our direction of travel. We reflect on our experiences and offer some practical advice for those looking to do the same. Results In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people. Their contributions have been isolated and mapped over a 10-year period. We begin at an early step of identifying what research questions to prioritize, we then plot PPIE activities for one of these research priorities, place of care, which evolved into BRIGHTLIGHT. We document steps along the way to evidence the impact of this involvement. Conclusions Young people can make a valuable contribution to healthcare research given adequate support from the research team. Although some challenges exist, we propose that the benefits to young people, researchers and the study considerably outweigh these challenges and PPIE with young people should be integrated in all similar research studies. [ABSTRACT FROM AUTHOR]
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- 2018
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165. The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure.
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Hulbert-Williams, Lee, Hulbert-Williams, Nicholas J., Martins, Ana, Storey, Lesley, Bradley, Jennie, O'Sullivan, Hatty, Fern, Lorna A., Lawal, Maria, Windsor, Rachael, Gerrand, Craig, Whelan, Jeremy S., Bennister, Lindsey, Wells, Mary, and Taylor, Rachel M.
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SARCOMA , *RESEARCH funding , *RESEARCH methodology evaluation , *QUESTIONNAIRES , *CANCER patients , *PSYCHOMETRICS , *QUALITY of life , *HEALTH outcome assessment , *ACTIVITIES of daily living , *EVALUATION , *DISEASE complications - Abstract
Simple Summary: The Sarcoma Assessment Measure (SAM) is a special questionnaire for patients with sarcomas, a type of cancer. It was created with input from both patients and healthcare professionals and is meant to be used by professionals to better understand how sarcoma affects a patient's life. We tested the SAM on 762 patients who had different types of sarcomas and ranged in age from 13 to 82. We found that the SAM could be a useful tool for both researchers and healthcare professionals to assess how sarcoma symptoms impact a patient's life. However, more testing with a larger and more diverse group of patients is needed to be sure it is a good outcome measure in drug trials. The Sarcoma Assessment Measure (SAM) was developed as a sarcoma-specific patient-reported outcome measure to be used in clinical practice. We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed. [ABSTRACT FROM AUTHOR]
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- 2024
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166. Bobcat occupancy, tree islands, and invasive Burmese pythons in an Everglades conservation area.
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Buckman, Katherine M., D'Acunto, Laura E., Romañach, Stephanie S., Taylor, Rachel M., and Dorn, Nathan J.
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BOBCAT , *PROTECTED areas , *PYTHONS , *FORESTS & forestry , *WATER depth , *ISLANDS , *WETLANDS , *WATER levels - Abstract
Bobcats (Lynx rufus) are terrestrial mammals that also inhabit tree islands (i.e., topographically elevated patches of forested land) embedded in the subtropical Everglades wetlands, which serve as a dry refuge habitat during the wet season in this region of Florida, USA. The Comprehensive Everglades Restoration Plan seeks to restore Everglades water flow to pre‐drainage conditions, but little is known about how water levels or other landscape‐level factors may influence mammalian occurrence, such as bobcats, on the tree islands in this ecosystem. We used game camera records and occupancy modeling to test for effects of static habitat variables and dynamic hydrologic variables. We hypothesized that deep water levels would limit the accessibility of tree islands to bobcats; therefore, we predicted that bobcat occupancy would decline with higher water levels. We also tested for the effect of an expanding invasive snake (i.e., Burmese python [Python molarus bivittatus]) using output from a model constructed to predict density and spread of Burmese pythons across southern Florida. We hypothesized that increases in Burmese pythons on the landscape would influence the food resources of bobcats, resulting in reduced bobcat occupancy at higher predicted densities of pythons. We built detection histories using 1,855 bobcat images from game cameras set on 87 tree islands in an Everglades conservation area from 2005–2019. Bobcat occupancy was significantly diminished when predicted Burmese python densities exceeded approximately 3 Burmese pythons/km2. Bobcat occupancy probability also increased with tree‐island density around the focal tree island. Although water depth and hydroperiod surrounding tree islands appeared in our top 3 candidate models, the hydrologic variables had weak effects on bobcat occupancy. Our results suggest that while hydrologic dynamics may play a role, the invasive Burmese python has stronger influences on bobcat occupancy of tree islands in this Everglades conservation area. [ABSTRACT FROM AUTHOR]
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- 2024
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167. Using the making Visible the ImpaCT Of Research (VICTOR) questionnaire to evaluate the benefits of a fellowship programme for nurses, midwives and allied health professionals.
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Spring, Carolyn, Hogg, Julie, Holliday, Judith, Cooke, Jo, and Taylor, Rachel M
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ALLIED health education , *RESEARCH , *MIDWIVES , *EVALUATION of human services programs , *ROLE models , *MIDWIFERY , *HEALTH occupations students , *PROFESSIONAL employee training , *STUDENT assistance programs , *INTERVIEWING , *INTERNSHIP programs , *EXPERIENCE , *NURSING research , *STUDENTS , *QUESTIONNAIRES , *QUALITY assurance , *INTERPROFESSIONAL relations , *NURSING students , *STUDENT attitudes , *ALLIED health personnel , *CORPORATE culture - Abstract
Why you should read this article: • To be able to demonstrate the multiple impacts of research educational initiatives to the organisation funding them • To appreciate why changes in culture are needed in the health professions to support an evidence-base to better serve our populations • To understand how to build research capacity and show the benefit of investing in training opportunities Background: There is increasing emphasis in the UK on developing a nurse, midwife and allied health professional (NMAHP) workforce that conducts research. Training for clinical academic careers is provided by the National Institute for Health and Care Research (NIHR). However, the low number of successful applicants suggested there were barriers to achieving this. The Centre for Nursing and Midwifery Led Research (CNMR) launched a fellowship programme in 2016 to backfill two days a week of NMAHPs' time for up to a year, to give them time to make competitive applications to the NIHR. Aim: To report a study evaluating the CNMR fellowship programme. Discussion: The making Visible the ImpaCT Of Research (VICTOR) tool (Cooke et al 2019) was developed to describe the organisational impact of research. The 2016-17 CNMR fellows completed VICTOR and their responses were analysed using a framework approach. The analysis found the main benefits of participating in the programme were protected time for research, opportunities to develop collaborations, increasing intra- and inter-professional awareness of NMAHPs' research, peer-reviewed publications, and conference presentations. Challenges included a lack of support from line managers, limited value placed on NMAHPs' research and failure to backfill posts. Conclusion: There were some challenges with the fellowship programme, but all recipients found it to be a positive experience and undertook significant scholarly activity. Implications for practice: A contractual agreement must be established to foster committed partnerships between higher education institutions (HEIs) and the NHS. HEIs and the NHS should conduct frank discussions of the challenges encountered in fellowship programmes. Positive initiatives and outcomes in tertiary education and clinical settings should be shared to improve fellows' experiences and enhance partnerships between HEIs and the NHS. Job descriptions should include time allocation to review fellowship candidates' applications regardless of outcome. The showcasing of research successes and the benefits of NMAHP research must evolve to secure organisational 'buy in', which is the precursor to widening access to clinical academic pathways. [ABSTRACT FROM AUTHOR]
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- 2023
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168. Who Is Responsible for Nurse Wellbeing in a Crisis? A Single Centre Perspective.
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Hughes, Luke, Petrella, Anika, Fern, Lorna A., and Taylor, Rachel M.
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NURSES , *WELL-being , *COVID-19 pandemic , *LEADERSHIP , *SEMI-structured interviews - Abstract
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 interrelationship between leadership and nurses' wellbeing in an inner-city university hospital during the initial wave of the pandemic. Methods: We conducted secondary analyses of interview data collected during a hospital-wide evaluation of barriers and facilitators to changes implemented to support the surge of COVID-19 related admissions during wave one. Data were collected through semi-structured video interviews during May–July 2020. Interviews were analysed using Framework analysis. Results: Thirty-one nurses participated, including matrons (n = 7), sisters (n = 8), and specialist nursing roles (n = 16). Three overarching themes were identified: the impact on nurses, personal factors, and organisational factors. The impact on nurses manifested as distress and fatigue. Coping and help-seeking behaviours were found to be the two personal factors which underpinned nurses' wellbeing. The organisational factors that impacted nurses' wellbeing included decision-making, duty, and teamwork. Conclusions: The wellbeing of the workforce is pivotal to the health service, and it is mutually beneficial for patients, staff, and leaders. Addressing how beliefs and misconceptions around wellbeing are communicated and accessing psychological support are key priorities to supporting nurses during pandemics. [ABSTRACT FROM AUTHOR]
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- 2023
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169. Patients' Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways.
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Martin, Sam, Clark, Sigrún Eyrúnardóttir, Gerrand, Craig, Gilchrist, Katie, Lawal, Maria, Maio, Laura, Martins, Ana, Storey, Lesley, Taylor, Rachel M., Wells, Mary, Whelan, Jeremy S., Windsor, Rachael, Woodford, Julie, Vindrola-Padros, Cecilia, and Fern, Lorna A.
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BIOPSY , *TIME , *RESEARCH methodology , *INTERVIEWING , *PATIENTS' attitudes , *CANCER patients , *DESCRIPTIVE statistics , *RESEARCH funding , *DIAGNOSTIC errors , *THEMATIC analysis , *SARCOMA , *SECONDARY analysis , *SYMPTOMS - Abstract
Simple Summary: Sarcomas are uncommon cancers growing in bones and soft tissue. As they are uncommon, we know less about them. Patients with sarcoma take longer to be diagnosed. This study examines what 78 people with different types of sarcomas told us about being diagnosed. We found out that approximately 7/10 people go to their General Practitioner (GP) first and do this within about 2 weeks of noticing something is wrong; however, those aged 13–24 years waited longer, at just over 4 weeks. Most people took approximately 3 months from noticing a symptom to being diagnosed, while those with soft tissue sarcoma took 5 months. More research is needed to help us diagnose sarcomas more quickly. Patients with sarcoma often report prolonged time to diagnosis, which is attributed to the rarity of sarcoma and the low awareness of pre-diagnostic signs and symptoms. Aims: To describe patients' experiences of pre-diagnostic signs/symptoms and pathways to diagnosis, including where help was sought, and the processes involved. Methods: Mixed methods involving quantitative, qualitative and inductive thematic analyses using novel process mapping of patient journey data, as reported by the patients. We examined the time from symptom onset to first professional presentation (patient interval, PI), first consultation to diagnostic biopsy, first consultation to diagnosis (diagnostic interval) and first presentation to diagnosis (total interval). Results: A total of 87 interviews were conducted over 5 months in 2017. Of these, 78 (40 males/38 females) were included. The sarcoma subtypes were bone (n = 21), soft tissue (n = 41), head and neck (n = 9) and gastro-intestinal (GIST; n = 7). Age at diagnosis was 13–24 (n = 7), 25–39 (n = 23), 40–64 (n = 34) and 65+ (n = 14) years. The median PI was 13 days (1–4971) and similar between sarcoma subtypes, with the exception of GIST (mPI = 2 days, (1–60). The longest mPI (31 days, range 4–762) was for those aged 13–24 years. The median diagnostic interval was 87.5 (range 0–5474 days). A total of 21 patients were misdiagnosed prior to diagnosis and symptoms were commonly attributed to lifestyle factors. Conclusions: Prolonged times to diagnosis were experienced by the majority of patients in our sample. Further research into the evolution of pre-diagnostic sarcoma symptoms is required to inform awareness interventions. [ABSTRACT FROM AUTHOR]
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- 2023
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170. The Development of Ambulatory Cancer Care in the UK: A Scoping Review of the Literature.
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Finch, Alison, Cooper, Silvie, Raine, Rosalind, Taylor, Rachel M., and Gibson, Faith
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CINAHL database , *PSYCHOLOGY information storage & retrieval systems , *OUTPATIENT medical care , *MEDICAL information storage & retrieval systems , *SYSTEMATIC reviews , *MEDICAL care , *HUMAN services programs , *LITERATURE reviews , *MEDLINE , *CANCER patient medical care - Abstract
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 set out to understand the provenance of the clinical pathway, whilst exploring drivers for the development of AC in the UK. Methods. Using scoping review methods, database citation, and grey literature, searches were undertaken to map the storyline of AC's development internationally. The Joanna Briggs Institute guidance was followed; this included consultation with six professionals considered critical to the development of AC. Results. From the 57 records identified between 1979 and 2022, four domains were identified through a narrative synthesis that reflected the following drivers for AC: financial; optimisation of bed capacity; advances in technology and supportive care; and professional motivation to improve patient experience. Conclusion. We report the first descriptive analysis of the international development of AC, locating the UK cancer service within its commissioning, operational, and philosophical foundations. The review additionally highlights limited research exploring the experience of the AC model from the patients' perspective. [ABSTRACT FROM AUTHOR]
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- 2023
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171. Fear of Cancer Recurrence in Patients with Sarcoma in the United Kingdom.
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Petrella, Anika, Storey, Lesley, Hulbert-Williams, Nicholas J., Fern, Lorna A., Lawal, Maria, Gerrand, Craig, Windsor, Rachael, Woodford, Julie, Bradley, Jennie, O'Sullivan, Hatty, Wells, Mary, and Taylor, Rachel M.
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TUMOR classification , *ANALYSIS of variance , *SOCIAL support , *SELF-evaluation , *MULTIPLE regression analysis , *FEAR , *COGNITION , *DISEASE relapse , *CANCER patients , *SURVEYS , *RESEARCH funding , *SARCOMA , *PSYCHOLOGICAL distress - Abstract
Simple Summary: After a cancer diagnosis, the fear that it could come back is one of the most difficult negative emotions to manage. Sarcoma is a rare cancer of connective tissue affecting soft tissue and bone that has a high rate of recurrence and metastases. It can present itself in any age group from childhood to older adulthood. The experience of fear of cancer recurrence has not yet been explored in-depth among those with sarcoma. We, therefore, conducted an online survey to identify the prevalence of fear of cancer recurrence and factors that may be associated with it. A total of 229 people with sarcoma submitted responses, and the majority expressed interest in receiving support for fear of cancer recurrence. Overall, fear of cancer recurrence levels was found to be higher than those reported by patients with most other types of cancer. Emotional distress and being able to manage emotions were associated with fear of cancer recurrence. 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 explore factors that may predict FCR, such as the perceived impact of cancer and psychological flexibility. Participants (n = 229) with soft tissue (n = 167), bone (n = 25), and gastrointestinal stromal tumours (n = 33) completed an online survey including the self-reported measures of FCR, the perceived physical and psychological impact of cancer and psychological flexibility, and demographic information. Data were analysed using ANOVA and multiple regression modelling. Mean FCR scores (M = 91.4; SD = 26.5) were higher than those reported in meta-analytic data inclusive of all cancer types (M = 65.2; SD = 28.2). Interest in receiving support for FCR was also high (70%). Significant factors associated with FCR included cognitive and emotional distress and psychological flexibility, but not perceptions of the physical impact of cancer (R2 = 0.56). The negative association between psychological flexibility and FCR suggests the potential benefit of intervention approaches which foster psychological flexibility, such as acceptance and commitment therapy. [ABSTRACT FROM AUTHOR]
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- 2023
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172. CAN PARENTS ACCURATELY ASSESS ADOLESCENTS QUALITY OF LIFE AFTER LIVER TRANSPLANTATION?
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Taylor, Rachel M, Franck, Linda S, Gibson, Faith, and Dhawan, Anil
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- 2006
173. THE IMPACT OF IMMUNOSUPPRESSION ON HEALTH RELATED QUALITY OF LIFE IN ADOLESCENTS AFTER LIVER TRANSPLANTATION.
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Taylor, Rachel M, Franck, Linda S, Gibson, Faith, Donaldson, Nora, and Dhawan, Anil
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- 2006
174. Associations between diagnostic time intervals and health-related quality of life, clinical anxiety and depression in adolescents and young adults with cancer: cross-sectional analysis of the BRIGHTLIGHT cohort.
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Forster, Alice S., Herbert, Annie, Koo, Minjoung Monica, Taylor, Rachel M., Gibson, Faith, Whelan, Jeremy S., Lyratzopoulos, Georgios, and Fern, Lorna A.
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Background: The association of diagnostic intervals and outcomes is poorly understood in adolescents and young adults with cancer (AYA). We investigated associations between diagnostic intervals and health-related quality of life (HRQoL), anxiety and depression in a large AYA cohort. Methods: Participants aged 12–24 completed interviews post-diagnosis, providing data on diagnostic experiences and the patient-reported outcomes (PROs) HRQoL, anxiety and depression. Demographic and cancer information were obtained from clinical and national records. Six diagnostic intervals were considered. Relationships between intervals and PROs were examined using regression models. Results: Eight hundred and thirty participants completed interviews. In adjusted models, across 28 of 30 associations, longer intervals were associated with poorer PROs. Patient intervals (symptom onset to first seeing a GP) of ≥1 month were associated with greater depression (adjusted odds ratio (aOR):1.7, 95% Confidence Interval (CI):1.1–2.5) compared to <1 month. ≥3 pre-referral GP consultations were associated with greater anxiety (aOR:1.6, CI:1.1–2.3) compared to 1–2 consultations. Symptom onset to first oncology appointment intervals of ≥2 months was associated with impaired HRQoL (aOR:1.8, CI:1.2–2.5) compared to <2 months. Conclusions: Prolonged diagnostic intervals in AYA are associated with an increased risk of impaired HRQoL, anxiety and depression. Identifying and delivering interventions for this high-risk group is a priority. [ABSTRACT FROM AUTHOR]
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- 2022
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175. Development of a patient-reported experience questionnaire for patients with sarcoma: the Sarcoma Assessment Measure (SAM).
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Martins, Ana, Bennister, Lindsey, Fern, Lorna A., Gerrand, Craig, Onasanya, Maria, Storey, Lesley, Wells, Mary, Whelan, Jeremy S., Windsor, Rachael, Woodford, Julie, and Taylor, Rachel M.
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GASTROINTESTINAL stromal tumors , *SARCOMA , *COMPREHENSION testing , *BONES , *TEST validity - Abstract
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 from across the United Kingdom. In-depth interviews were conducted with 121 patients (50% male; aged 13–82; with soft tissue sarcoma (62%), bone tumours (28%) and gastrointestinal stromal tumours (10%)). Content analysis of the interview transcripts identified 1415 post-diagnosis experience statements. Experience statements were reviewed, repetition was removed and sentences were refined to form 395 'items' which were included in an Item Reduction Questionnaire (IRQ) grouped as physical, emotional, social and financial wellbeing and sexuality. The IRQ was completed by 250 patients who rated each item on importance and worry. Items with a mean score above 5 (6 in the emotional domain) were removed, which reduced the list to 166 items. After review by the research team, 23 clinicians and 34 patients, 66 items were retained to test content validity. Items with a content validity ratio of <.33 were removed. Cognitive interviews were conducted with 10 patients on the final 22 items to test comprehension. Minor changes were made to four. Conclusion: SAM comprises of 22 items reflecting physical, emotional, social, financial wellbeing and sexuality. This systematic process of using patient experience to develop the content of SAM will ensure that it measures what is important to patients. [ABSTRACT FROM AUTHOR]
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- 2020
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176. The support and information needs of adolescents and young adults with cancer when active treatment ends.
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Lea, Sarah, Martins, Ana, Fern, Lorna A., Bassett, Matthew, Cable, Maria, Doig, Gary, Morgan, Sue, Soanes, Louise, Whelan, Michael, and Taylor, Rachel M.
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YOUNG adults , *INFORMATION needs , *MEDICAL personnel , *TEENAGERS , *TELEPHONE interviewing , *CANCER patients , *PSYCHO-oncology - Abstract
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 the end of active treatment.Methods: This was a multi-stage, mixed methods study exploring the end of treatment experience from the perspectives of young people, and the healthcare professionals caring for them. Semi-structured interviews were undertaken with healthcare professionals, which informed a survey administered nationally. Subsequently, semi-structured interviews were conducted with young people. These combined results informed a co-design workshop to develop recommendations.Results: Telephone interviews were conducted with 12 healthcare professionals and 49 completed the online survey. A total of 11 young people aged 19-26 years (female = 8; 73%) were interviewed. The stakeholder workshop was attended by both healthcare professionals (n = 8) and young people (n = 3). At the end of treatment young people experience numerous ongoing physical issues including pain, fatigue and insomnia; in addition to a range of psychosocial and emotional issues including anxiety, fear of recurrence and isolation. The top three priorities for end of treatment care were: earlier provision and preparation around on-going impact of cancer and cancer treatment; standardised and continued follow-up of young people's emotional well-being; and development of more information and resources specific to young people.Conclusion: The access and availability of appropriate information and sources of support at the end of treatment is variable and inequitable. Young people's needs would be more effectively met by timely, structured and accessible information, and support provision at the end of treatment to both prepare and enable adaptation across their transition to living with and beyond cancer. This will require both organisational and practical adjustments in care delivery, in addition to a renewed and updated understanding of what the 'end of treatment' transition process means. [ABSTRACT FROM AUTHOR]- Published
- 2020
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177. Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study
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Lorna A Fern, Rachel M Taylor, Rosalind Raine, Dan Stark, Stephen Morris, Faith Gibson, Ana Martins, Javier Alvarez-Galvez, Richard G. Feltbower, Louise Hooker, Julie Barber, Sarah Lea, Jeremy Whelan, Biomedicina, Biotecnología y Salud Pública, Taylor, Rachel M [0000-0002-0853-0925], Alvarez-Galvez, Javier [0000-0001-9512-7853], Morris, Stephen [0000-0002-5828-3563], Whelan, Jeremy [0000-0001-6793-5722], and Apollo - University of Cambridge Repository
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Adult ,medicine.medical_specialty ,Adolescent ,endocrine system diseases ,organisation of health services ,quality in health care ,Young Adult ,Quality of life (healthcare) ,Neoplasms ,Intervention (counseling) ,Health services research ,Humans ,Medicine ,Longitudinal Studies ,Prospective Studies ,Young adult ,Longitudinal cohort ,Child ,Receipt ,business.industry ,Confounding ,Cancer ,General Medicine ,medicine.disease ,England ,Family medicine ,oncology ,Quality of Life ,business - Abstract
ObjectivesIn 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 prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTCDesignLongitudinal cohort study.SettingHospitals delivering inpatient cancer care in England.Participants1114 young people aged 13 to 24 years newly diagnosed with cancer.InterventionExposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care.Primary outcomeQuality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis.ResultsGroup mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups.ConclusionsReceipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study.
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- 2020
178. The impact of COVID-19 on the wellbeing of the UK nursing and midwifery workforce during the first pandemic wave: A longitudinal survey study.
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Couper, Keith, Murrells, Trevor, Sanders, Julie, Anderson, Janet E., Blake, Holly, Kelly, Daniel, Kent, Bridie, Maben, Jill, Rafferty, Anne Marie, Taylor, Rachel M., and Harris, Ruth
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POST-traumatic stress disorder , *WELL-being , *WORK environment , *CONFIDENCE intervals , *CONFIDENCE , *MULTIVARIATE analysis , *SOCIAL media , *AGE distribution , *PREVENTION of communicable diseases , *LABOR supply , *RISK assessment , *SURVEYS , *NURSES , *DESCRIPTIVE statistics , *LOGISTIC regression analysis , *ODDS ratio , *INDUSTRIAL hygiene , *COVID-19 pandemic , *LONGITUDINAL method - Abstract
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 associated with signs of post-traumatic stress disorder. A United Kingdom national online survey was conducted at three time-points during the first wave of the COVID-19 pandemic between April and August 2020 (T1 and T2 during initial wave; T3 at three-months following the first wave). All members of the UK registered and unregistered nursing and midwifery workforce were eligible to participate. The survey was promoted via social media and through organisational email and newsletters. The primary outcome was an Impact of Events Scale-Revised score indicative of a post-traumatic stress disorder diagnosis (defined using the cut-off score ≥33). Multivariable logistic regression modelling was used to assess the association between explanatory variables and post-traumatic stress disorder. We received 7840 eligible responses (T1 - 2040; T2 - 3638; T3 - 2162). Overall, 91.6% participants were female, 77.2% were adult registered nurses, and 28.7% were redeployed during the pandemic. An Impact of Events Scale-Revised score ≥33 (probable post-traumatic stress disorder) was observed in 44.6%, 37.1%, and 29.3% participants at T1, T2 , and T3 respectively. At all three time-points, both personal and workplace factors were associated with probable post-traumatic stress disorder, although some specific associations changed over the course of the pandemic. Increased age was associated with reduced probable post-traumatic stress disorder at T1 and T2 (e.g. 41–50 years at T1 odds ratio (OR) 0.60, 95% confidence interval (CI) 0.42–0.86), but not at T3. Similarly, redeployment with inadequate/ no training was associated with increased probable post-traumatic stress disorder at T1 and T2 , but not at T3 (T1 OR 1.37, 95% CI 1.06–1.77; T3 OR 1.17, 95% CI 0.89–1.55). A lack of confidence in infection prevention and control training was associated with increased probable post-traumatic stress disorder at all three time-points (e.g. T1 OR 1.48, 95% CI 1.11–1.97). A negative psychological impact was evident 3-months following the first wave of the pandemic. Both personal and workplace are associated with adverse psychological effects linked to the COVID-19 pandemic. These findings will inform how healthcare organisations should respond to staff wellbeing needs both during the current pandemic, and in planning for future pandemics. [ABSTRACT FROM AUTHOR]
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- 2022
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179. The Impact of Specialist Care on Teenage and Young Adult Patient-Reported Outcomes in England: A BRIGHTLIGHT Study.
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Taylor RM, Whelan JS, Barber JA, Alvarez-Galvez J, Feltbower RG, Gibson F, Stark DP, and Fern LA
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- Humans, Adolescent, Male, Female, Young Adult, England, Adult, Cohort Studies, Neoplasms psychology, Neoplasms therapy, Patient Reported Outcome Measures
- Abstract
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.
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- 2024
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180. Cancer in prison: barriers and enablers to diagnosis and treatment.
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Armes J, Visser R, Lüchtenborg M, Huynh J, Wheatcroft S, X A, Barber AE, Plugge E, Taylor RM, Hunter RM, and Davies EA
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Background: Approximately 82,000 people are in prison annually in England and Wales. Limited research has investigated cancer in this population and none has explored experiences of imprisoned people with cancer. This study aimed to address this gap., Methods: We conducted 55 semi-structured, qualitative, audio-recorded interviews with: imprisoned people with cancer (n = 24), custodial staff (n = 6), prison healthcare staff (n = 16) and oncology specialists (n = 9). Data were collected 07/10/2019-20/03/2020. Patients were recruited by prison healthcare staff and interviews were conducted face-to-face. Professionals were recruited via professional networks and interviews were conducted face-to-face or via telephone. Transcribed interviews were analysed using reflexive thematic analysis. We also analysed relevant National Cancer Patient Experience Survey (NCPES) questions for those diagnosed in prison (n = 78) and in the general population (n = 390)., Findings: Our findings highlight the complexities of cancer care for imprisoned people. We identified three core themes: control and choice, communication, and care and custody. Whilst people in prison follow a similar diagnostic pathway to those in the community, additional barriers to diagnosis exist including health literacy, the General Practitioner appointment booking system and communication between prison and oncology staff. Tensions between control and choice in prison impacted aspects of cancer care experience such as symptom management and accessing cancer information. NCPES results supported the qualitative findings and showed people in prison reported significantly poorer experiences than in the general population., Interpretation: Our findings demonstrate the complexity of cancer care in custodial settings, identifying barriers and enablers to equitable cancer care provision and offering insights on how to improve care for this population., Funding: National Institute for Health and Social Care Research Delivery Research Programme 16/52/53 and Strategic Priorities Fund 2019/20 Research England via University of Surrey., Competing Interests: The authors declare that they have no conflict of interest., (Crown Copyright © 2024 Published by Elsevier Ltd.)
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- 2024
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181. Does the cost of cancer care for people in prison differ from those in the general population? Analysis of matched English cancer registry and hospital records.
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Hunter RM, Huynh J, Lüchtenborg M, Armes J, Plugge E, Taylor RM, Visser R, and Davies EA
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Background: People in prison experience poorer mental and physical health compared to their peers in the general population. The causes are multi-dimensional ranging from lifestyle factors to poorer access to healthcare. Little is known about cancer in people in prison or how the cost of their care compares to the general population., Methods: Data on people diagnosed with cancer while in English prisons were identified in National Cancer Registration dataset and linked to Hospital Episode Statistics (HES) for the years 2012-2017. General population matched patients were identified using a 1-5 ratio, based on age, gender, year of diagnosis, cancer type and disease stage. Outpatient and inpatient HES data up to six-months from diagnosis were costed using NHS Reference costs and inflated to 2017/2018 costs., Findings: 879 prison and 4326 general population cancer diagnoses were identified in HES. The adjusted six-month cost of cancer care was significantly lower for people in prison (-£1216.95% confidence interval (CI) -1638 to -795), driven by fewer outpatient attendances. However, people diagnosed in prison had higher emergency care costs (£497.95% CI 375-619). Security escorts further increased the total cost of care., Interpretation: Following a cancer diagnosis, people in English prisons have significantly lower planned care costs, but higher emergency care costs and an overall higher cost due to security escorts. Further work is required to identify ways of improving cancer care for people in prisons to ensure it is equivalent to that received by the general population., Funding: National Institute for Health and Social Care Research 16/52/53., Competing Interests: RMH has received payments from Ministry of Justice and UK Health Security Agency for prison related consultancy work. JA is a member of the Executive Committee Member of British Psychosocial Oncology Society (unpaid) declares funding from NIHR Health Services and Social Care Delivery Programme, the Applied Research Collaboration Kent, Surrey and Sussex and the Strategic Priorities Fund 2019/20 Research England vis University of Surrey. EAD has received funding from Emory College, The Irish Cancer Society and Singapore Government., (© 2024 The Author(s).)
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- 2024
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182. Psychosocial and Support Needs of the Main Caregiver for Adolescents and Young Adults Undergoing Treatment for Cancer.
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Pettitt NJ, Petrella AR, Neilson S, Topping A, and Taylor RM
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Background: Family relationships and social networks are critically important to adolescents and young adults (AYAs) with cancer, impacting their experience and well-being throughout the cancer trajectory. A cancer diagnosis impacts the development of independence and an adult identity, which can present challenges to psychosocial well-being needs and relationships between caregivers and AYAs., Objective: The aim of this study was to explore the psychosocial and support needs of the main caregivers of AYAs., Methods: This is a secondary analysis of the BRIGHTLIGHT caregiver survey, exploring items pertaining to support offered/engaged with, appraisal of helpfulness, and caregivers' emotional and psychological distress experience. Descriptive statistics, a correlational analysis, and a 1-way analysis of variance were conducted., Results: There were 518 caregiver responses (62%). Over half received information about their caregiving needs, with the majority finding this very/fairly helpful. Most (80%) of those who had not received the information would have valued it. High levels of negative emotional and psychological well-being were reported, with 91% feeling depressed or anxious since the AYAs' diagnosis and 41% always/often experiencing these feelings. Total distress was associated with being younger, a parent, female, and unemployed, and earning a below-average income., Conclusions: The needs of caregivers are broad and multidimensional; however, some characteristics were associated with higher distress. When caregiver-specific information was provided by healthcare professionals, it was well received., Implications for Practice: Healthcare professionals should consider caregivers' needs individually and provide/signpost to support. Caregivers need to be involved in designing and implementing future research, given the heterogeneity of needs identified., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)
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- 2024
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183. The Emotional Impact of a Cancer Diagnosis: A Qualitative Study of Adolescent and Young Adult Experience.
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Hughes L, Taylor RM, Beckett AE, Lindner OC, Martin A, McCulloch J, Morgan S, Soanes L, Uddin R, and Stark DP
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The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people's experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3-5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing.
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- 2024
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184. A Qualitative Study of the Factors Influencing Patients' Experience of Soft Tissue Sarcoma in the United Kingdom.
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Martins A, Bennister L, Fern LA, Gerrand C, Onasanya M, Storey L, Wells M, Whelan JS, Windsor R, Woodford J, and Taylor RM
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- Humans, Female, Male, United Kingdom, Qualitative Research, Patients, Focus Groups, Sarcoma therapy, Sarcoma diagnosis
- Abstract
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., Objective: The aim of this study was an in-depth exploration of patients' experience of being diagnosed with soft tissue sarcoma., Methods: Semistructured interviews and focus groups were conducted with 68 patients with soft tissue sarcoma (59% female; aged 23-82 years). These were analyzed using adapted framework analysis., Results: Two overarching themes explained the factors influencing patients' experiences: individual and social factors to manage the impact of soft tissue sarcoma; and context and processes of care. Access to professionals with sarcoma expertise and services in specialist hospitals had an impact on patients' well-being. Lack of access to specialist services and coordinated care were associated with worse experiences. These were influenced by age and support from family/friends/other patients and were crucial in patients' adaptation to living with and beyond a sarcoma diagnosis., Conclusion: We describe factors that both negatively and positively influenced the experience of patients with soft tissue sarcoma. Access to specialist soft tissue sarcoma and rehabilitation services and support tailored to patients' age and disease trajectory are needed to improve these experiences., Implication for Practice: Nurses are important for helping patients manage the long-term effects and directing them to supportive care services. Rehabilitation services need to be available and easily accessible., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)
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- 2024
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185. Triadic communication with teenagers and young adults with cancer: a systematic literature review - 'make me feel like I'm not the third person'.
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Critoph DJ, Taylor RM, Spathis A, Duschinsky R, Hatcher H, Clyne E, Kuhn I, and Smith LAM
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- Humans, Adolescent, Young Adult, Physician-Patient Relations, Neoplasms psychology, Communication
- Abstract
Objectives: Clinical communication needs of teenagers and young adults with cancer (TYACs) are increasingly recognised to differ significantly from younger children and older adults. We sought to understand who is present with TYACs, TYACs' experiences of triadic communication and its impact. We generated three research questions to focus this review: (1) Who is present with TYACs in healthcare consultations/communication?, (2) What are TYACs' experiences of communication with the supporter present? and (3) What is the impact of a TYAC's supporter being present in the communication?, Design: Systematic review with narrative synthesis., Data Sources: The search was conducted across six databases: Medline, CINAHL, Embase, PsycINFO, Web of Science and AMED for all publications up to December 2023., Eligibility Criteria for Selecting Studies: Included papers were empirical research published after 2005; participants had malignant disease, diagnosed aged 13-24 years (for over 50% of participants); the research addressed any area of clinical communication., Data Extraction and Synthesis: Three independent reviewers undertook full-text screening. A review-specific data extraction form was used to record participant characteristics and methods from each included paper and results relevant to the three review questions., Results: A total of 8480 studies were identified in the search, of which 36 fulfilled the inclusion criteria. We found that mothers were the most common supporter present in clinical communication encounters. TYACs' experiences of triadic communication are paradoxical in nature-the supporter can help or hinder the involvement of the young person in care-related communication. Overall, young people are not included in clinical communication and decisions at their preferred level., Conclusion: Triadic communication in TYACs' care is common, complex and dynamic. Due to the degree of challenge and nuances raised, healthcare professionals need further training on effective triadic communication., Prospero Registration Number: CRD42022374528., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)
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- 2024
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186. Choosing the right questions - A systematic review of patient reported outcome measures used in radiotherapy and proton beam therapy.
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Fairweather D, Taylor RM, and Simões R
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- Humans, Radiotherapy adverse effects, Proton Therapy methods, Patient Reported Outcome Measures, Neoplasms radiotherapy, Quality of Life
- Abstract
The implementation of PROMs into clinical practice has been shown to improve quality of care. This systematic review aims to identify which PROMs are suitable for implementation within routine clinical practice in a radiotherapy or PBT service.The bibliographic databases MEDLINE, EMBASE and EMCARE were searched. Articles published between 1st January 2008 to 1st June 2023, that reported PROMs being utilised as an outcome measure were included. Inclusion criteria also included being written in English, involving human patients, aged 16 and above, receiving external beam radiotherapy or PBT for six defined tumour sites. PROMs identified within the included articles were subjected to quality assessment using the COSMIN reporting guidelines. Results are reported as per PRISMA guidelines. A total of 268 studies were identified in the search, of which 52 fulfilled the inclusion criteria. The use of 39 different PROMs was reported. The PROMs identified were mostly tumour or site-specific quality of life (n = 23) measures but also included generic cancer (n = 3), health-related quality-of-life (n = 6), and symptom specific (n = 7) measures.None of the PROMs identified received a high GRADE score for good content. There were 13 PROMs that received a moderate GRADE score. The remaining PROMs either had limited evidence of development and validation within the patient cohorts investigated, or lacked relevance or comprehensiveness needed for routine PROMs collection in a radiotherapy or PBT service.This review highlights that there are a wide variety of PROMs being utilised within radiotherapy research, but most lack specificity to radiotherapy side-effects. There is a risk that by using non-specific PROMs in clinical practice, patients might not receive the supportive care that they need., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Crown Copyright © 2023. Published by Elsevier B.V. All rights reserved.)
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- 2024
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187. An evaluation of staff experiences of the Royal Literary Fund writer-in-residence service to support improvements in written communication in healthcare.
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Pengelly C, Spring C, and Taylor RM
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Written communication is essential to staff and patient experience in healthcare. The Royal Literary Fund has hosted a writing fellow in an NHS Trust since 2018 providing professional writing training. The aim of this evaluation was to explore the experiences of staff using the service. Semi-structured interviews were conducted with 21 staff members from a range of professions who had accessed the service. Data were analysed using thematic analysis. Findings: The writing service was highly valued. Three themes emerged: feelings about writing at work, reported benefits of attending sessions, and perceived barriers to accessing them. Staff felt underskilled in professional writing and described the wish to write more succinctly and reflectively. Self-reported confidence increased after sessions. Stigma around writing skills prevented some staff from recommending the service. Wider adoption of professional writing skills training through the NHS could have benefits in terms of increasing self-perceived skills and confidence., Competing Interests: Conflict of interest: The authors declare no potential conflict of interest, and all authors confirm accuracy., (Copyright © 2023, the Author(s).)
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- 2023
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188. Evaluation of the impact of redeployment during the COVID-19 pandemic: results from a multi-centre survey.
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Taylor RM, Hughes L, Fern LA, Hogg J, and Petrella A
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Background: The COVID-19 pandemic brought unprecedented upheaval for healthcare systems globally. Rapid changes in the way nurses were asked to work brought about many challenges, especially with the requirement for nurses to move into intensive care and high dependency areas to deliver care for the increasing number of critically ill patients., Aim: The purpose of this evaluation was to assess the impact of these changes on nurses who were redeployed during the first acute phase of the pandemic and explore factors associated with burnout., Methods: A redeployment survey, containing 42 items in four domains (preparation for redeployment, safety and support, perceived competence, reflections and emotional impact) was administered online to nurses who had been redeployed in two hospitals in England, one urban and one rural. Bivariate correlations and a multiple linear regression model were conducted to explore associations between perceptions of leadership, training, communication and feeling valued with levels of emotional exhaustion., Results: Valid responses were received from 240/618 (39%) nurses. The majority of respondents felt it was their duty to work where they were asked (79%), were prepared to work where needed (72%) and were consulted on changes to their working hours (55%). However, nurses were nervous about the new role (75%) and felt they had a lack of choice regarding redeployment (66%) and the way it was implemented (50%). Multiple regression analysis showed that lack of training (β = 0.18) and feeling undervalued (β = 0.48) was positively associated with emotional exhaustion, which accounted for 38% of the variance among redeployed nurses., Conclusions: To mitigate the risk of nurses developing burnout as a result of redeployment, there is a need for training to upskill them so they feel competent in doing the changed role. Additionally, nursing leadership needs to support nurses feeling valued as individuals in their role., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2023.)
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- 2023
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189. Young people's opinions of cancer care in England: the BRIGHTLIGHT cohort.
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Hughes L, Fern LA, Whelan JS, Taylor RM, and Study Group B
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- Child, Adolescent, Young Adult, Humans, Cohort Studies, Adult Children, England, Hospitals, State Medicine, Neoplasms therapy
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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 newly diagnosed with cancer., Interventions: Exposure to specialist care in the first 6 months after diagnosis defined as care in a TYA Principal Treatment Centre (PTC). This was categorised as follows: all care in a TYA-PTC (ALL-TYA-PTC), no care in a TYA-PTC (NO-TYA-PTC) so care delivered in a children/adult unit only and some care in a TYA-PTC with additional care in a children's/adult unit (SOME-TYA-PTC)., Primary Outcome: Data were collected through the BRIGHTLIGHT survey included free-text questions which asked patients 'what was the best aspects of their experiences of care' and 'what aspects could be improved'. These comments were analysed using content analysis. Themes were compared between categories of care, then ranked in order of frequency, ranging from the most endorsed to the least., Results: Overall, young people were most positive about their healthcare team, while the area highlighted for improvement was diagnostic experience. Differences between the three groups suggested those who had some or all treatment in a TYA-PTC valued the place of care. Regardless of where TYA were treated their healthcare teams were favourably viewed. Age appropriate place of care was highlighted to be of value for those in PTCs., Conclusions: These data show the value young people placed on the care they received in TYA specific wards. Young people who accessed some or all of their care in a TYA-PTC highly endorsed their place of care as one of the best elements of their care, and it is further emphasised by those who had shared care who experienced difficulty with lack of age-appropriate care when treated outside the TYA-PTC., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2023
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190. Impact of leadership on the nursing workforce during the COVID-19 pandemic.
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Phillips N, Hughes L, Vindrola-Padros C, Petrella A, Fern LA, Panel-Coates F, and Taylor RM
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- Humans, Pandemics, Leadership, Workforce, COVID-19 epidemiology, Nursing Staff, Hospital
- Abstract
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 admissions in wave 1 of the pandemic. Participants represented three-levels of leadership: whole hospital (n=17), division (n=7), ward/department-level (n=8) and individual nurses (n=16). Interviews were analysed using framework analysis., Results: Key changes that were implemented in wave 1 reported at whole hospital level included: a new acute staffing level, redeploying nurses, increasing the visibility of nursing leadership, new staff well-being initiatives, new roles created to support families and various training initiatives. Two main themes emerged from the interviews at division, ward/department and individual nurse level: impact of leadership and impact on the delivery of nursing care., Conclusions: Leadership through a crisis is essential for the protective effect of nurses' emotional well-being. While nursing leadership was made more visible during wave 1 of the pandemic and processes were in place to increase communication, system-level challenges resulting in negative experiences existed. By identifying these challenges, it has been possible to overcome them during wave 2 by employing different leadership styles to support nurse's well-being. Challenges and distress that nurses experience when making moral decisions requires support beyond the pandemic for nurse's well-being. Learning from the pandemic about the impact of leadership in a crisis is important to facilitate recovery and lessen the impact in further outbreaks., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2023
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191. Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme
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Taylor RM, Fern LA, Barber J, Gibson F, Lea S, Patel N, Morris S, Alvarez-Galvez J, Feltbower R, Hooker L, Martins A, Stark D, Raine R, and Whelan JS
- Abstract
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 children and older adults with similar cancers. These unique circumstances have driven the development of care models specifically for teenagers and young adults with cancer, often focused on a dedicated purpose-designed patient environments supported by a multidisciplinary team with expertise in the needs of teenagers and young adults. In England, this is commissioned by NHS England and delivered through 13 principal treatment centres. There is a lack of evaluation that identifies the key components of specialist care for teenagers and young adults, and any improvement in outcomes and costs associated with it., Objective: To determine whether or not specialist services for teenagers and young adults with cancer add value., Design: A series of multiple-methods studies centred on a prospective longitudinal cohort of teenagers and young adults who were newly diagnosed with cancer., Settings: Multiple settings, including an international Delphi study of health-care professionals, qualitative observation in specialist services for teenagers and young adults, and NHS trusts., Participants: A total of 158 international teenage and young adult experts, 42 health-care professionals from across England, 1143 teenagers and young adults, and 518 caregivers., Main Outcome Measures: The main outcomes were specific to each project: key areas of competence for the Delphi survey; culture of teenagers and young adults care in the case study; and unmet needs from the caregiver survey. The primary outcome for the cohort participants was quality of life and the cost to the NHS and patients in the health economic evaluation., Data Sources: Multiple sources were used, including responses from health-care professionals through a Delphi survey and face-to-face interviews, interview data from teenagers and young adults, the BRIGHTLIGHT survey to collect patient-reported data, patient-completed cost records, hospital clinical records, routinely collected NHS data and responses from primary caregivers., Results: Competencies associated with specialist care for teenagers and young adults were identified from a Delphi study. The key to developing a culture of teenage and young adult care was time and commitment. An exposure variable, the teenagers and young adults Cancer Specialism Scale, was derived, allowing categorisation of patients to three groups, which were defined by the time spent in a principal treatment centre: SOME (some care in a principal treatment centre for teenagers and young adults, and the rest of their care in either a children’s or an adult cancer unit), ALL (all care in a principal treatment centre for teenagers and young adults) or NONE (no care in a principal treatment centre for teenagers and young adults). The cohort study showed that the NONE group was associated with superior quality of life, survival and health status from 6 months to 3 years after diagnosis. The ALL group was associated with faster rates of quality-of-life improvement from 6 months to 3 years after diagnosis. The SOME group was associated with poorer quality of life and slower improvement in quality of life over time. Economic analysis revealed that NHS costs and travel costs were similar between the NONE and ALL groups. The ALL group had greater out-of-pocket expenses, and the SOME group was associated with greater NHS costs and greater expense for patients. However, if caregivers had access to a principal treatment centre for teenagers and young adults (i.e. in the ALL or SOME groups), then they had fewer unmet support and information needs., Limitations: Our definition of exposure to specialist care using Hospital Episode Statistics-determined time spent in hospital was insufficient to capture the detail of episodes or account for the variation in specialist services. Quality of life was measured first at 6 months, but an earlier measure may have shown different baselines., Conclusions: We could not determine the added value of specialist cancer care for teenagers and young adults as defined using the teenage and young adult Cancer Specialism Scale and using quality of life as a primary end point. A group of patients (i.e. those defined as the SOME group) appeared to be less advantaged across a range of outcomes. There was variation in the extent to which principal treatment centres for teenagers and young adults were established, and the case study indicated that the culture of teenagers and young adults care required time to develop and embed. It will therefore be important to establish whether or not the evolution in services since 2012–14, when the cohort was recruited, improves quality of life and other patient-reported and clinical outcomes., Future Work: A determination of whether or not the SOME group has similar or improved quality of life and other patient-reported and clinical outcomes in current teenage and young adult service delivery is essential if principal treatment centres for teenagers and young adults are being commissioned to provide ‘joint care’ models with other providers., Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research ; Vol. 9, No. 12. See the NIHR Journals Library website for further project information., (Copyright © 2021 Taylor et al. This work was produced by Taylor et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.)
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- 2021
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192. The BRIGHTLIGHT National Survey of the Impact of Specialist Teenage and Young Adult Cancer Care on Caregivers' Information and Support Needs.
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Martins A, Alvarez-Galvez J, Fern LA, Vindrola-Padros C, Barber JA, Gibson F, Whelan JS, and Taylor RM
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- Adaptation, Psychological, Adolescent, Adult, Cohort Studies, Cost of Illness, England, Humans, Male, Middle Aged, Needs Assessment, Neoplasms rehabilitation, Surveys and Questionnaires, Young Adult, Caregivers psychology, Health Services Needs and Demand statistics & numerical data, Neoplasms psychology, Quality of Life psychology
- Abstract
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/some care in a TYA-PTC., Methods: Participants in a cohort study of young people with cancer nominated their main carer to complete the BRIGHTLIGHT Carer Questionnaire, completed 6 months after diagnosis. Comparisons were made according to where young people's care was delivered: all, some, or no care in a TYA-PTC. Principal components analysis reduced the questionnaire to 5 dimensions, which were used as dependent variables in subsequent regression analysis., Results: Four hundred seventy-six responses of 514 returned questionnaires (92%) were included in the analysis. The majority of caregivers were white, middle-aged, married/cohabiting mothers. Adjusted analysis indicated caregivers who had all/some care in a TYA-PTC had more satisfaction with support and also with services specifically provided for carers. Those who had some TYA-PTC care had greater satisfaction with information but less opportunity to be involved in decisions., Conclusions: Caregivers of young people who had no TYA-PTC care have the most unmet information and support needs., Implications for Practice: Nurses outside of the TYA-PTC need to be supported by the TYA-PTC in providing information/support for caregivers. When a young person is receiving care in multiple hospitals, nurses need to optimize opportunities for caregivers to be involved in decision making., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.)
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- 2021
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193. Fear expression is reduced after acute and repeated nociceptin/orphanin FQ (NOP) receptor antagonism in rats: therapeutic implications for traumatic stress exposure.
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Taylor RM, Jeong IH, May MD, Bergman EM, Capaldi VF, Moore NLT, Matson LM, and Lowery-Gionta EG
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- Animals, Dose-Response Relationship, Drug, Exploratory Behavior drug effects, Exploratory Behavior physiology, Fear drug effects, Fear physiology, Male, Memory drug effects, Memory physiology, Opioid Peptides metabolism, Rats, Rats, Sprague-Dawley, Stress Disorders, Post-Traumatic metabolism, Stress Disorders, Post-Traumatic psychology, Nociceptin Receptor, Nociceptin, Benzimidazoles administration & dosage, Cycloheptanes administration & dosage, Fear psychology, Opioid Peptides antagonists & inhibitors, Piperidines administration & dosage, Receptors, Opioid metabolism, Stress Disorders, Post-Traumatic drug therapy
- Abstract
Rationale: Evaluation of pharmacotherapies for acute stress disorder (ASD) or post-traumatic stress disorder (PTSD) is challenging due to robust heterogeneity of trauma histories and limited efficacy of any single candidate to reduce all stress-induced effects. Pursuing novel mechanisms, such as the nociceptin/orphanin FQ (NOP) system, may be a viable path for therapeutic development and of interest as it is involved in regulation of relevant behaviors and recently implicated in PTSD and ASD., Objectives: First, we evaluated NOP receptor antagonism on general behavioral performance and again following a three-species predator exposure model (Experiment 1). Then, we evaluated effects of NOP antagonism on fear memory expression (Experiment 2)., Methods: Adult, male rats underwent daily administration of NOP antagonists (J-113397 or SB-612,111; 0-20 mg/kg, i.p.) and testing in acoustic startle, elevated plus maze, tail-flick, and open field tests. Effects of acute NOP antagonism on behavioral performance following predator exposure were then assessed. Separately, rats underwent fear conditioning and were later administered SB-612,111 (0-3 mg/kg, i.p.) prior to fear memory expression tests., Results: J-113397 and SB-612,111 did not significantly alter most general behavioral performance measures alone, suggesting minimal off-target behavioral effects of NOP antagonism. J-113397 and SB-612,111 restored performance in measures of exploratory behavior (basic movements on the elevated plus maze and total distance in the open field) following predator exposure. Additionally, SB-612,111 significantly reduced freezing behavior relative to control groups across repeated fear memory expression tests, suggesting NOP antagonism may be useful in dampening fear responses. Other measures of general behavioral performance were not significantly altered following predator exposure., Conclusions: NOP antagonists may be useful as pharmacotherapeutics for dampening fear responses to trauma reminders, and the present results provide supporting evidence for the implication of the NOP system in the neuropathophysiology of dysregulations in fear learning and memory processes observed in trauma- and stress-related disorders.
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- 2020
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194. BRIGHTLIGHT researchers as 'dramaturgs': creating There is a Light from complex research data.
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Taylor RM, Lobel B, Thompson K, Onashile A, Croasdale M, Hall N, Gibson F, Martins A, Wright D, Morgan S, Whelan JS, and Fern LA
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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 development and management, working as co-researchers, consultants and collaborators throughout. We aimed to share results in a way that was meaningful to young people, the public, and multidisciplinary professionals. This paper reports the development of ' There is a Light: BRIGHTLIGHT', a theatrical interpretation of study results by young people, and offers insight into the impact on the cast, researchers and audiences., Methods: The BRIGHTLIGHT team collaborated with Contact Young Company, a youth theatre group in Manchester. Twenty members of Contact Young Company and four young people with cancer worked together over an eight-week period during which BRIGHTLIGHT results were shared along with explanations of cancer, healthcare policy and models of care in interactive workshops. Through their interpretation, the cast developed the script for the performance. The impact of the process and performance on the cast was evaluated through video diaries. The research team completed reflective diaries and audiences completed a survey., Results: 'There is a Light' contained five acts and lasted just over an hour. It played 11 performances in six cities in the United Kingdom, to approximately 1377 people. After nine performances, a 30-min talk-back between members of the cast, creative team, an expert healthcare professional, and the audience was conducted, which was attended by at least half the audience. Analysis of cast diaries identified six themes: initial anxieties; personal development; connections; cancer in young people; personal impact; interacting with professionals. The cast developed strong trusting relationships with the team. Professionals stated they felt part of the process rather than sitting on the periphery sharing results. Both professional and lay audiences described the performance as meaningful and understandable. Feedback was particularly positive from those who had experienced cancer themselves., Conclusions: Using theatre to present research enabled BRIGHTLIGHT results to be accessible to a larger, more diverse audience., Competing Interests: Competing interestsThe authors declare they have no competing interests., (© The Author(s) 2020.)
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- 2020
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195. Global Health Transitions and Sustainable Solutions: The Role of Partnerships: Proceedings of a Workshop
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Maurice J and Taylor RM
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On June 13–14, 2018, the National Academies of Sciences, Engineering, and Medicine convened a multistakeholder workshop to examine the transitions affecting global health and innovative global health solutions. The goal of bringing these two topics together was to collectively explore models for innovative partnerships and private-sector engagement with the potential to support countries in transition. This publication summarizes the presentations and discussions from the workshop., (Copyright 2019 by the National Academy of Sciences. All rights reserved.)
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- 2018
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196. Online information and support needs of young people with cancer: a participatory action research study.
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Lea S, Martins A, Morgan S, Cargill J, Taylor RM, and Fern LA
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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 are met by existing online resources., Patients and Methods: This was a participatory action research study involving 21 young people participating in workshops and individual interviews. Participants aged 13-24 years were diagnosed with a range of cancers. Young people were on treatment or had completed treatment; some had experienced relapse. Workshops consisted of participatory methods including focus group discussions, interactive activities, and individual thought, encompassing online resources used; when, how and what they were searching for, whether resources were helpful and how they could be improved., Results: Young people reported using communication platforms, entertainment sites, social media, medical websites, charity websites, and search engines to find information and support. Different online use and needs were described throughout their cancer timeline and online use was generally driven by negative emotions. Seven factors influenced access and engagement: 1) where young people were on their cancer timeline; 2) external influencing factors, such as family and environments; 3) emotional drivers; 4) what young people search for online; 5) resources, websites, and digital platforms used by young people; 6) availability, accessibility, and assessment of online information and resources; 7) emotional responses to using online resources., Conclusion: The way young people access and engage with online resources is complex with multiple influencing factors including powerful emotional drivers and responses to Internet searching. There is a need to develop resources that support the holistic needs of young people and this should be done in collaboration with young people., Competing Interests: Disclosure LAF, SM, and JC are funded by Teenage Cancer Trust. RMT and SL are funded by NIHR, and AM is funded by Sarcoma UK. The authors report no other conflicts of interest in this work.
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- 2018
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197. Evaluation of patient-reported outcome protocol content and reporting in UK cancer clinical trials: the EPiC study qualitative protocol.
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Retzer A, Keeley T, Ahmed K, Armes J, Brown JM, Calman L, Copland C, Efficace F, Gavin A, Glaser A, Greenfield DM, Lanceley A, Taylor RM, Velikova G, Brundage M, Mercieca-Bebber R, King MT, Calvert M, and Kyte D
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- Clinical Trials as Topic, Humans, Qualitative Research, Health Personnel, Neoplasms therapy, Patient Reported Outcome Measures, Research Design
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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 suboptimal. This programme of research will establish via three interlinked studies whether these findings are applicable to UK cancer trials, and if so, how to best enhance the way PROs are assessed, managed and reported in clinical trials. This study will explore with key stakeholders factors that influence optimal PRO protocol content, implementation and reporting and make recommendations for training and guidance., Methods and Analysis: Semistructured interviews will be conducted with members of key stakeholder groups. The purposive sample of up to 48 participants will include: (1) trial chief investigators, trial management group members, statisticians and research nurses of cancer trials including primary or secondary PRO recruited via the National Cancer Research Institute (NCRI) Clinical Studies Group and Consumer Liaison Group and the UK Clinical Research Collaboration Registered UK Clinical Trial Unit Network; (2) NCRI Consumer Liaison Group members; (3) international experts in PRO oncology trial design; and (4) journal editors and funding bodies. Data will be analysed using directed thematic analysis employing a coding frame and modified as analysis progresses. Formal triangulation of coding and member checking will be employed to enhance credibility., Ethics and Dissemination: This study was approved by the University of Birmingham Ethics Committee (Ref: ERN_17-0085). Findings will be disseminated via conference presentations, peer-reviewed journals, patient groups and social media (@CPROR_UoB; http://www.birmingham.ac.uk/cpror)., Prospero Registration Number: CRD42016036533., Competing Interests: Competing interests: JA, LC, CC, AnG, AdG, DMG, DK and AL are all members of the National Cancer Research Institute Psychosocial Oncology and Survivorship CSG subgroup: ‘Understanding and measuring the consequences of cancer and its treatment’. FE receives consultancy fees from Bristol-Myers Squibb, Seattle Genetics, TEVA and Incyte; and research funding from Lundbeck, TEVA and Amgen. GV receives grants from the National Institute for Health Research and Yorkshire Cancer Research, and personal fees from Roche, Genentech, Eisai and Novartis. MC has received personal fees from Astellas Pharma and Ferring and chairs the ISOQOL Best Practice for PROs in Trials Taskforce. JMB receives grants from the National Institute of Health Research, Yorkshire Cancer Research, Macmillan and Roche. JA is in receipt of grant funding from EU FP7 Framework. AdG is in receipt of grants from Candlelighters, National Institute for Health Research, Macmillan Cancer Support, Prostate Cancer UK and Yorkshire Cancer Research. MTK and RM-B have received project funding from Abbvie and Alcon. MTK cochairs the ISOQOL Best Practice for PROs in Trials Taskforce. DK and RM-B are members of the ISOQOL Best Practice for PROs in Trials Taskforce., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)
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- 2018
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198. Exploring the digital technology preferences of teenagers and young adults (TYA) with cancer and survivors: a cross-sectional service evaluation questionnaire.
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Abrol E, Groszmann M, Pitman A, Hough R, Taylor RM, and Aref-Adib G
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- Adolescent, Adult, Cross-Sectional Studies, Female, Humans, Male, Neoplasms mortality, Surveys and Questionnaires, Young Adult, Cancer Survivors psychology, Neoplasms psychology, Social Media statistics & numerical data, Technology methods
- Abstract
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 service., Methods: A cross-sectional survey was administered as a paper and online self-completed questionnaire to TYAs aged 13-24 accessing outpatient, inpatient, and day care cancer services at a regional specialist centre over a 4-week period., Results: One hundred two TYAs completed the survey (55.7% male; 39.8% female; 83.3% paper; 16.7% online; mean age 18.5 years [SD = 3.51]). Of the TYAs, 41.6% rated the importance of digital communication as "essential" to their lives. Half (51.0%) kept in contact with other patients they had met during treatment, and 12.0% contacted patients they had not met in person. Respondents wanted to receive clinical information online (66.3%) and use online chat rooms (54.3%). Future online services desired included virtual online groups (54.3%), online counselling or psychological support (43.5%), and receiving (66.3%) and sharing (48.9%) clinical information online., Conclusions: Young people with cancer are digital natives. A significant subgroup expressed a desire for digital resources from oncology services, though existing resources are also highly valued. Digital resources have potential to improve patient experience and engagement., Implications for Cancer Survivors: There is considerable scope to develop digital resources with which TYAs can receive information and connect with both professionals and fellow patients, following diagnosis, through treatment and survivorship.
- Published
- 2017
- Full Text
- View/download PDF
199. A mixed-methods study exploring sign-off mentorship practices in relation to the Nursing and Midwifery Council standards.
- Author
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Newton J, Taylor RM, and Crighton L
- Subjects
- Female, Humans, Qualitative Research, State Medicine, Education, Nursing standards, Mentors statistics & numerical data, Nurse Midwives education, Nursing Research methods, Students, Nursing statistics & numerical data
- Abstract
Aims and Objectives: To investigate the current practice and experience of sign-off mentors in one NHS trust., Background: In the UK, sign-off mentors support nursing students in their last clinical placement and are accountable for the final assessment of fitness to practice as a registered nurse., Design: Mixed-methods study., Methods: The focus was on two key Nursing and Midwifery Council standards: the requirement for students to work at least 40% of their time on clinical placement with a sign-off mentor/mentor; the sign-off mentor had one-hour-per-week protected time to meet the final placement student. Data were collected through two audits of clinical and university documents and an experience survey administered to all sign-off mentors in one trust., Results: The audits showed that only 22/42 (52%) of students were supervised by their sign-off mentor/mentor at least 40% of the time, whilst 10/42 (24%) students never worked a shift with their sign-off mentor. Only one student met their sign-off mentor every week. Complete data were available in 31/64 (47%) sign-off mentors, of whom 21/30 (70%) rarely/never had reduced clinical commitment to mentor final placement students. Furthermore, 19/28 (68%) met their student after their shift had ended with 24/30 (80%) reporting not getting any protected time., Conclusion: Sign-off mentors have inadequate time and resources to undertake their role, yet are accountable for confirming the student has the required knowledge and skills to practise safely. The current model needs urgent review to improve mentoring standards., Relevance to Clinical Practice: Understanding how the role of the sign-off mentor is working in practice is critical to ensuring that the Nursing and Midwifery Council standards are met, ensuring students are well supported and appropriately assessed in practice, and mentoring is given the high profile it deserves to guarantee high-quality care and protecting the public., (© 2016 John Wiley & Sons Ltd.)
- Published
- 2017
- Full Text
- View/download PDF
200. Insights for Setting of Nutrient Requirements, Gleaned by Comparison of Selenium Status Biomarkers in Turkeys and Chickens versus Rats, Mice, and Lambs.
- Author
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Sunde RA, Li JL, and Taylor RM
- Subjects
- Animals, Biomarkers blood, Biomarkers metabolism, Glutathione Peroxidase blood, Humans, Selenium blood, Selenium deficiency, Diet, Glutathione Peroxidase metabolism, Liver metabolism, Nutritional Requirements, Nutritional Status, Selenium metabolism, Selenoproteins metabolism
- Abstract
To gain insights into nutrient biomarkers and setting of dietary nutrient requirements, selenium biomarker levels and requirements in response to multiple graded levels of dietary selenium were compared between day-old turkeys and chickens versus weanling rats and mice and 2-d-old lambs supplemented with sodium selenite. In rodents, there was no significant effect of dietary selenium on growth, indicating that the minimum selenium requirement was <0.007 μg Se/g diet. In contrast, there was a significant effect in turkeys, chicks, and lambs, which showed selenium requirements for growth of 0.05, 0.025, and 0.05 μg Se/g diet, respectively. Liver glutathione peroxidase (GPX) 1 activity fell in all species to <4% of selenium-adequate levels, plasma GPX3 activity fell to <3% in all species except for mice, and liver GPX4 activity fell to <10% in avians but only to ∼50% of selenium-adequate levels in rodents. Selenium-response curves for these biomarkers reached well-defined plateaus with increasing selenium supplementation in all species, collectively indicating minimum selenium requirements of 0.06-0.10 μg Se/g for rats, mice, and lambs but 0.10-0.13 μg Se/g for chicks and 0.23-0.33 μg Se/g for turkeys. In contrast, increasing dietary selenium did not result in well-defined plateaus for erythrocyte GPX1 activity and liver selenium in most species. Selenium-response curves for GPX1 mRNA for rodents and avians had well-defined plateaus and similar breakpoints. GPX4 mRNA was not significantly regulated by dietary selenium in rodents, but GPX4 mRNA in avians decreased in selenium deficiency to ∼35% of selenium-adequate plateau levels. Notably, no selenoprotein activities or mRNA were effective biomarkers for supernutritional selenium status. Robust biomarkers, such as liver GPX1 and plasma GPX3 activity for selenium, should be specific for the nutrient, fall dramatically in deficiency, and reach well-defined plateaus. Differences in biomarker-response curves may help researchers better understand nutrient metabolism and targeting of tissues in deficiency, thus to better characterize requirements., Competing Interests: 2 Author disclosures: RA Sunde, J-L Li, and RM Taylor, no conflicts of interest., (© 2016 American Society for Nutrition.)
- Published
- 2016
- Full Text
- View/download PDF
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