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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.
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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.
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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.
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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.
Subject(s)
Intubation, Intratracheal , Tracheostomy , Humans , Tracheostomy/nursing , Intubation, Intratracheal/nursing , Airway Management/methods , Respiration, ArtificialABSTRACT
BACKGROUND: 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. METHODS: 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. FINDINGS: 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 100â000 person-years [95% CI 48·59-219·16] vs 746·97 per 100â000 person-years [742·31-751·66]), but increased to a similar level towards the end of the study period (in 2017, 856·85 per 100â000 person-years [675·12-1060·44] vs 788·59 per 100â000 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 10â944·2 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]). INTERPRETATION: 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. FUNDING: 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.
Subject(s)
Neoplasms , Prisoners , Humans , Female , Male , England/epidemiology , Incidence , Middle Aged , Neoplasms/epidemiology , Neoplasms/mortality , Neoplasms/therapy , Adult , Prisoners/statistics & numerical data , Aged , Young Adult , Adolescent , Prisons/statistics & numerical data , Cohort Studies , Registries/statistics & numerical dataABSTRACT
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.
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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.
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Communication , Neoplasms , Child , Humans , Adolescent , Young Adult , Aged , Narration , Emotions , Health Personnel , Neoplasms/therapyABSTRACT
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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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.
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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.
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Communication , Neoplasms , Humans , Adolescent , Neoplasms/psychology , Young Adult , Physician-Patient RelationsABSTRACT
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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Patient Reported Outcome Measures , Humans , Adolescent , Male , Female , Young Adult , England , Adult , Cohort Studies , Neoplasms/psychology , Neoplasms/therapyABSTRACT
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.
Subject(s)
Neoplasms , Patient Reported Outcome Measures , Proton Therapy , Quality of Life , Humans , Proton Therapy/methods , Neoplasms/radiotherapy , Radiotherapy/adverse effectsABSTRACT
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 (ß = 0.18) and feeling undervalued (ß = 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.
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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.
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Allied Health Personnel , Fellowships and Scholarships , Midwifery , Nurses , Humans , Health Services Research , Surveys and Questionnaires , Program EvaluationABSTRACT
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.
Subject(s)
Neoplasms , State Medicine , Child , Adolescent , Young Adult , Humans , Cohort Studies , Adult Children , England , Hospitals , Neoplasms/therapyABSTRACT
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.
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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.
Subject(s)
COVID-19 , Nursing Staff, Hospital , Humans , COVID-19/epidemiology , Pandemics , Leadership , WorkforceABSTRACT
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.
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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.
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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.