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I. INTRODUCTION "Church allowed abuse by priest for years" was the headline of the Boston Globe on Sunday, January 6, 2002. (1) Reporters at the Boston Globe exposed the truth [...]

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]

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. [ABSTRACT FROM AUTHOR]

Simple Summary: Developing cancer during adolescence or young adulthood adds extra challenges to an already difficult period of development. This can cause a 'biographical disruption,' in the sense that people miss out on key milestones they might reasonably have expected to achieve during the period, and this can affect their emotional wellbeing. While research shows that young people may experience various degrees of emotional distress, less is known about the emotional experiences and barriers young people experience when accessing help and support. We interviewed two groups of young people who were within 6 months of diagnosis and 3–5 years after treatment. We found three themes that described emotional health experiences: the emotional impact of cancer; personal barriers to support; and support to improve mental health. Differences were identified across the treatment journey, in which we were able to propose therapies and interventions that could be used to help improve psychological outcomes. 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. [ABSTRACT FROM AUTHOR]

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]

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]

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]

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]

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. [ABSTRACT FROM AUTHOR]

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]

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]

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]

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]

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]

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]

Abstract Aim To describe and evaluate two approaches--a storyboard and a wordsearch--that the authors used with children aged four to 12 years to obtain assent. Background The assent process is [...]

Approximately 250 children receive kidney, liver, heart, lung and small bowel transplants every year in the United Kingdom. The success of solid organ transplantation has been made possible by the [...]