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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]

The article discusses the legal liability of religious organizations in Missouri, U.S. for negligence actions involving child abuse under the guise of the First Amendment. It explores the recent case of Doe 122 v. Marianist Province of the U.S., which highlights the difficulties of holding religious organizations accountable for their actions. It discusses the history of child sexual abuse in the Catholic Church and the systemic problem of church leaders protecting abusers.

Longitudinal studies provide developmental science with invaluable information about how variables and the associations between variables change across time, but typically give limited attention to the length of time over which that change occurs. The present study re-analyzed data from previously published meta-analyses of longitudinal data across a broad range of developmental science to ascertain how lag may have impacted coefficients of stability (kmeta-analyses = 6, kstudies = 157) and prediction (kmeta-analyses = 15, kstudies = 270). We additionally analyzed how average participant age interacts with lag to test how the impact of lag might change across the lifespan. Findings indicate that conventional lags (e.g., 6 months, 12 months) were used at extremely high rates: More than 75% of lags were selected based on convention. Linear and nonlinear models indicated that lag moderated stability and predictive associations, although the significance, magnitude, and direction of this impact changed depending on the phenomenon under investigation. Average participant age interacted with lag in certain cases, providing a possibility for more time-specific developmental theory. However, these results should not be considered conclusive due to the high number of conventional lags in our sample, which likely restricted both variability in lags and the length of those lags. Future longitudinal studies should measure phenomena at varying lags, and future meta-analysts should consider both lag and average participant age when synthesizing longitudinal research. Both practices would enable developmental science to determine the interval over which a phenomenon occurs and facilitate advancements in developmental theory. [ABSTRACT FROM AUTHOR]

• 39 PROMs were identified as being utilised within radiotherapy and PBT research. • But none received a high content validity score for use within clinical practise. • Most PROMs lacked specificity to radiotherapy side-effects. • Therefore, it is difficult to recommend which PROMs to use routinely. • Using inappropriate PROMs may mean patients do not get the support they need. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

There is interest in supplementing animals and humans with selenium (Se) above Se-adequate levels, but the only good biomarker for toxicity is tissue Se. We targeted liver because turkeys fed 5 μg Se/g have hepatic Se concentrations 6-fold above Se-adequate (0.4 μg Se/g) levels without effects on growth or health. Our objectives were (i) to identify transcript biomarkers for high Se status, which in turn would (ii) suggest proteins and pathways used by animals to adapt to high Se. Turkey poults were fed 0, 0.025, 0.4, 0.75 and 1.0 μg Se/g diet in experiment 1, and fed 0.4, 2.0 and 5.0 μg Se/g in experiment 2, as selenite, and the full liver transcriptome determined by RNA-Seq. The major effect of Se-deficiency was to down-regulate expression of a subset of selenoprotein transcripts, with little significant effect on general transcript expression. In response to high Se intake (2 and 5 μg Se/g) relative to Se-adequate turkeys, there were only a limited number of significant differentially expressed transcripts, all with only relatively small fold-changes. No transcript showed a consistent pattern of altered expression in response to high Se intakes across the 1, 2 and 5 μg Se/g treatments, and there were no associated metabolic pathways and biological functions that were significant and consistently found with high Se supplementation. Gene set enrichment analysis also found no gene sets that were consistently altered by high-Se and supernutritional-Se. A comparison of differentially expressed transcript sets with high Se transcript sets identified in mice provided high Se (~3 μg Se/g) also failed to identify common differentially expressed transcript sets between these two species. Collectively, this study indicates that turkeys do not alter gene expression in the liver as a homeostatic mechanism to adapt to high Se. [ABSTRACT FROM AUTHOR]

The current NRC turkey Se requirement is 0.2 μg Se/g diet. Recent studies evaluating tissue Se, glutathione peroxidase (GPX) activities, and selenoprotein transcript expression concluded that the dietary Se requirement of the turkey poult should be raised to 0.4 μg Se/g when supplemented with inorganic Se. The FDA currently limits Se inclusion in premixed diets for poultry and other livestock species to 0.3 μg Se/g diet. Thus, there is a need to investigate the effect of high dietary Se (>1.0 μg Se/g) in turkeys. The present study fed turkey poults 2 and 5 μg Se/g diet to characterize tissue Se accumulation in turkey poults fed high dietary inorganic Se and to evaluate the efficacy of selenoprotein activity and transcript expression as biomarkers of high Se status. Day-old male poults were fed 0.4, 2, or 5 μg Se/g for 28 d. There was no significant effect of Se supplementation on poult growth. Supplementation with 5 μg Se/g diet resulted in Se concentrations that were 5.6X, 1.7X, 1.9X, and 2.0X greater than Se-adequate levels in liver, kidney, breast, and thigh, respectively, and GPX activities in plasma, red cells, liver, kidney, and heart that were ≤2.0X Se-adequate values. In liver, kidney, heart, gizzard, breast, or thigh, no selenoprotein transcript was increased ≥2.0X, and no selenoprotein transcript was decreased ≤0.5X by 2 or 5 μg Se/g diet as compared to poults fed 0.4 μg Se/g diet. Of the 112 Se status biomarkers reported in this study, liver Se concentration was the only biomarker markedly altered by high Se status. This study provides evidence of no adverse effects in turkey poults fed up to 5 μg Se/g diet as inorganic Se. Thus, the FDA limit for Se supplementation in turkey feed can be safely raised to 0.5 μg Se/g diet. Future studies are needed to identify biomarkers for high Se status and to better understand how turkeys maintain Se homeostasis and resist Se toxicity. [ABSTRACT FROM AUTHOR]

The elevated plus maze (EPM) is routinely used in neuroscience research to evaluate emotional behavior in rodents by measuring general exploratory performance and avoidance of the aversive open arms of the maze. According to standard practice, behavior on the EPM is evaluated during a single trial to avoid the possibility of habituation to the apparatus that would result in lost sensitivity of key outcome measures. However, this possibility has not been systematically evaluated across repeated trials or across different environmental conditions. In the current study, we assessed within-subject behavior on the EPM in adult male rats over thirteen trials (tested twice weekly) repeated under identical conditions. We also assessed within-subject behavior on the EPM in adult male rats under dim (1 lux in the closed arm) and lit (246 lux in the closed arm) environmental conditions. We found that measures of general performance (basic movements and total distanced travelled throughout the maze) were stable across repeated trials and environmental conditions. We found that measures of open arm avoidance (distance travelled in, time spent in and entries in to the open arm) varied across trials and environmental conditions and were sensitive to the lighting conditions of the initial test. Though measures of open arm avoidance did show a linear trend indicative of habituation across repeated trials, this effect was variable across trials. Notably, preference for the open arm over the closed arm (measured as % of time spent in the open arm) assessed among individual animals occurred rarely and was never observed on the group level across the thirteen repeated trials. Together, these data demonstrate that measures of general performance such as basic movements and total distance traveled are robust to repeated testing and changing environmental lighting conditions. In contrast, measures of open arm avoidance show habituation with repeated testing and are sensitive to changing environmental lighting conditions. Based on these results, we suggest that within-subjects repeated testing on the EPM is valid in well-controlled studies that include an untreated control group to account for inter-trial variability and habituation. [ABSTRACT FROM AUTHOR]

Purpose: Discovering sexuality and romantic relationships are important development milestones in adolescence and young adulthood. A cancer diagnosis imposes obstacles for young people such as changes in their sexual function due to the disease and/or side effects of treatment, body image concerns, and interpersonal relationship difficulties. This can cause psychological distress and can impact on quality of life. We aimed to explore sexual health information and support needs of adolescents and young adults with cancer. Methods: Five young people aged 16–24 years, with a previous cancer diagnosis when aged 13–22 years, attended an in-depth 4-hour workshop. The framework approach was used to analyze workshop transcripts. Results: Three overarching themes emerged: (i) information sharing; (ii) contexts and relationships (influencing factors); and (iii) information sharing preferences. Information shared by healthcare professionals was focused on a medicalized view of sex with symptoms, infection control, and protected sex at its core. Young people had unanswered questions related to sexual function, the impact of cancer and how to manage it, and about pleasure, body image, and relationships. Parents' presence at clinical consultations inhibited discussions about sex. Young people wanted professionals who were comfortable to talk about sex with them. Conclusion: Young people exhibited significant unmet needs around information provision on sex, body image, and relationships. They wanted information to be given by professionals and access to online resources. Development of training for professionals and resources to support young people requires further work. [ABSTRACT FROM AUTHOR]

The current NRC selenium (Se) requirement for turkeys is 0.2 μg Se/g diet. We previously fed turkey poults a Se-deficient diet (0.005 μg Se/g) supplemented with 10 graded levels of Se (0, 0.025, 0.05, 0.1, 0.2, 0.3, 0.4, 0.5, 0.75, 1.0 μg Se/g as Na2SeO3, 5/treatment) for 4 wk, and found that the minimum dietary Se requirement was 0.3 μg Se/g based on selenoprotein enzyme activity in blood, liver, gizzard and pancreas. Because the turkey is primarily a production animal, we expanded this analysis to kidney, heart, breast and thigh. Se concentrations in Se-deficient poults were 5.0, 9.8, 33, and 15% of levels in poults fed 0.4 μg Se/g in liver, kidney, thigh and breast, respectively. Increasing Se supplementation resulted in hyperbolic response curves for all tissues; breakpoint analysis indicated minimum Se requirements of 0.34–0.36 μg Se/g based on tissue Se levels in liver, kidney and thigh. Similarly, GPX1 activity in muscle tissues and kidney responded hyperbolically to increasing dietary Se, reaching well-defined plateaus with breakpoints at 0.30–0.36 μg Se/g. Minimum Se requirements based on GPX4 activity were 0.30–0.32 μg Se/g for breast and thigh. Selenoprotein transcript expression decreased significantly in Se deficiency for only 2, 3, 5, and 6 mRNA in breast, thigh, heart, and kidney, respectively, out of 24 known avian selenoproteins. Se response curves for regulated selenoprotein transcripts were hyperbolic, and reached well-defined plateaus with breakpoints in a narrow range of 0.08–0.19 μg Se/g. No selenoprotein transcript was altered by supernutritional Se. In summary, these results clearly indicate that the NRC dietary Se requirement should be raised to 0.4 μg Se/g, at least for poults, to meet the nutritional needs of the young turkey. The Se response curve plateaus further show that limits for turkey supplementation with selenite could safely be raised to 0.5 μg Se/g diet. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: To maximize retention of participants in a longitudinal cohort study, we sought to understand young peoples' views about barriers and facilitators to continuing study participation. Methods: Ten young people with a previous cancer diagnosis aged 15–24 participated in a 1 day workshop. The workshop used participatory methodology consisting of three exercises as follows: role play/scene setting; force field analysis of research participation in small groups; and focus group discussion. A final prioritization exercise was administered individually after the workshop. Results: Twenty-four barriers to maintaining participation were summarized in five themes as follows: life commitments; concerns specific to the study; emotional barriers; practical barriers; and other reasons. The top 3 specific barriers were as follows: not a priority/other things are more important; too time consuming; and forgetting/memory. The top 3 facilitators for participation were as follows: wishing to help other young people; giving back to the cancer community; and honoring an initial commitment to participation. The top 3 suggested solutions to encourage continued participation were as follows: reminder text message or email before each survey to check preferred method of delivery; breaking up the online survey into modules to make completion less overwhelming; and consolidation of study information in one location. Conclusion: Involving young people in designing a retention strategy for young people with cancer has informed the BRIGHTLIGHT retention strategy. Patient and public involvement is imperative for successful research but measuring impact is challenging. The success of implementing the changes to optimize retention was shown in the increase in retention in Wave 3 from 30% to final participation of 58%. [ABSTRACT FROM AUTHOR]

The current National Research Council (NRC) selenium (Se) requirement for the turkey is 0.2 μg Se/g diet. The sequencing of the turkey selenoproteome offers additional molecular biomarkers for assessment of Se status. To determine dietary Se requirements using selenoprotein transcript levels and enzyme activities, day-old male turkey poults were fed a Se-deficient diet supplemented with graded levels of Se (0, 0.025, 0.05, 0.1, 0.2, 0.3, 0.4, 0.5, 0.75, 1.0 μg Se/g diet) as selenite, and 12.5X the vitamin E requirement. Poults fed less than 0.05 μg Se/g diet had a significantly reduced rate of growth, indicating the Se requirement for growth in young male poults is 0.05 μg Se/g diet. Se deficiency decreased plasma GPX3 (glutathione peroxidase), liver GPX1, and liver GPX4 activities to 2, 3, and 7%, respectively, of Se-adequate levels. Increasing Se supplementation resulted in well-defined plateaus for all blood, liver and gizzard enzyme activities and mRNA levels, showing that these selenoprotein biomarkers could not be used as biomarkers for supernutritional-Se status. Using selenoenzyme activity, minimum Se requirements based on red blood cell GPX1, plasma GPX3, and pancreas and liver GPX1 activities were 0.29–0.33 μg Se/g diet. qPCR analyses using all 10 dietary Se treatments for all 24 selenoprotein transcripts (plus SEPHS1) in liver, gizzard, and pancreas found that only 4, 4, and 3 transcripts, respectively, were significantly down-regulated by Se deficiency and could be used as Se biomarkers. Only GPX3 and SELH mRNA were down regulated in all 3 tissues. For these transcripts, minimum Se requirements were 0.07–0.09 μg Se/g for liver, 0.06–0.15 μg Se/g for gizzard, and 0.13–0.18 μg Se/g for pancreas, all less than enzyme-based requirements. Panels based on multiple Se-regulated transcripts were effective in identifying Se deficiency. These results show that the NRC turkey dietary Se requirement should be raised to 0.3 μg Se/g diet. [ABSTRACT FROM AUTHOR]

Background: Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. Methods: A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14-25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14-24 years. Result: Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people's cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. Conclusion: Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive. [ABSTRACT FROM AUTHOR]

Background: Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end–points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13–24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. Methods: A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14–25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14–24 years. Result: Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people’s cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. Conclusion: Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'. Methods: Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference. Results: BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes. Conclusions: Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We propose this reproducible methodology as an important, enjoyable, and novel way of involving patients in research and a welcome alternative to researcher-developed acronyms. Ideally this should be carried out prior to engaging with healthcare professionals to prevent confusion around study identity. [ABSTRACT FROM AUTHOR]

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]

Objectives To determine the agreement of fingertip and sternum capillary refill time (CRT) in children. Design Prospective, method-comparison study. Setting Single children's emergency department, UK Participants 92 children aged 0-12 years, with clinical observations within normal ranges for their age, no relevant medical history and presenting to hospital with a minor illness or injury. Main outcome measures Agreement between fingertip and sternum CRT measurements. Results Fingertip CRT ranged from 0.05 to 2.78 s with a mean of 1.08±0.44 and sternum CRT ranged from 0.85 to 2.38 s with a mean of 1.5±0.33. There was a significant difference between fingertip and sternum CRT (t=-9.2, df=91, p=<0.001) and a weak association between the two measurements (r=0.18, p=0.9). A Bland Altman comparison showed the mean difference between fingertip and sternum CRT was -0.49±0.51 with an upper and lower limit of agreement ranging from -1.5 (95% CI -1.69 to -1.32) to 0.53 (95% CI 0.34 to 0.71). Conclusions Measurements of CRT taken at the fingertip and sternum are not comparable. Fingertip CRT was faster than sternum CRT. Normal CRT is 2-3 s. The current study questions the usefulness of CRT in the assessment of circulation in children. [ABSTRACT FROM AUTHOR]

Adolescence is a difficult time for those with chronic illness because of the constraints of the illness on developmental tasks. Little is known about the impact liver transplantation has during adolescence. In this study we aimed to explore, in their own words, young people's lived experience of life after transplantation. We used semistructured interviews to collect narrative data, and used a purposive sample of 14 young people in early, middle, and late adolescence, transplanted for a range of chronic, acute, and metabolic liver diseases. We analyzed the transcripts using a framework in which analysis progresses through a five-stage process of matrices. Six main themes emerged, related to relationships, affect on schooling, tiredness and fatigue, acceptance of the burden of medication, communication with health professionals, and view of the future. These findings add new insight into the transplantation experience, which might lead to improvements in care and help direct further research in this important aspect of clinical care. [ABSTRACT FROM AUTHOR]

Taylor RM, Wray J, Gibson F. Measuring quality of life in children and young people after transplantation: Methodological considerations. Pediatr Transplantation 2010: 14:445–458. © 2010 John Wiley & Sons A/S. The measurement of QoL has become an important area for research in paediatric transplantation over the past 15 yr. While much of this work remains descriptive and exploratory, advances in treatment and the trend towards outcomes being patient centred and not just survival based suggest the measurement of QoL will be of far more importance and relevance in the future. In this discussion article, we will outline some of the issues that need to be considered when embarking on a QoL study. The aim of our account is not to be prescriptive, rather to present researchers and clinicians with questions and possible solutions to help increase the scientific robustness of future studies. We have included summary tables of instruments that are currently available as a resource for those wanting to evaluate QoL in paediatric transplantation. [ABSTRACT FROM AUTHOR]

Al-Hussaini A, Taylor RM, Samyn M, Bansal S, Heaton N, Rela M, Mieli-Vergani G, Dhawan A. Long-term outcome and management of hepatopulmonary syndrome in children. Pediatr Transplantation 2010:14:276–282. © 2009 John Wiley & Sons A/S. We aim to report a single center experience of the management and long term outcome of HPS in pediatric liver transplant recipients. A retrospective review of children with HPS from 1990 to 2004. Inclusion criteria: liver disease or portal hypertension, hypoxemia (PaO2 < 70 mmHg or SaO2 < 95%) and intrapulmonary shunting documented by macroaggregated albumin scan ratio of >4% (classified mild group [<20%], moderate group [20–40%] and severe group [>40%]). Resolution of HPS post-liver transplant was defined as PaO2 > 70 mmHg or SaO2 > 95%. Eighteen children (six male [34%], median age at diagnosis of HPS 8.6 [1–15.5] yr) had HPS: biliary atresia (n = 8), idiopathic biliary cirrhosis (n = 4), progressive intrahepatic cholestasis (n = 2), miscellaneous (n = 4). The majority had mild shunting (n = 8). Fourteen underwent transplantation with resolution of HPS in 13. Six developed complications: hepatic artery thrombosis (n = 4), biliary (n = 2). Four children died (28%), two pretransplant. There was a tendency towards shunt fraction worsening to a slower degree over time. One-yr survival rate post-transplant was 93%. Median PaO2 was significantly lower in non-survivors compared to survivors (43 vs. 55.2 mmHg, p = 0.03). There was correlation between oxygen parameters pretransplant and time to HPS resolution post-transplant. HPS is reversible after transplant, but is associated with increasing mortality and morbidity. [ABSTRACT FROM AUTHOR]

Our aim was to review our experience of trientine as chelation therapy in children with Wilson disease (WD) and compare to that reported in the literature. We made a retrospective review of the medical notes of 16 of 96 (17%) children diagnosed with WD between 1981 and 2006. Children were 6.6 to 15 years old. Only three received trientine as initial therapy [parental choice (two), allergic reactions to penicillamine (one) during the penicillamine challenge], 13 of 16 were converted from penicillamine to trientine because of reactions to penicillamine: haematuria in four, bone marrow suppression in three, neutropenia in three. Trientine was discontinued in three due to allergic rash, low copper excretion and one with compliance problems requiring transplantation. Seventy-five per cent of children presented with chronic liver disease. Kayser-Fleischer rings were noticed in eight of 16, Wilson Ferenci score range was between 4 and 10 (nl < 4). Laboratory indices remained relatively stable. In line with previous reports, trientine was used mainly as secondary treatment when there were severe side effects with penicillamine. Whilst the current evidence is low quality, it appears that trientine is as efficacious as penicillamine and small population studies show a lower side effect profile. [ABSTRACT FROM AUTHOR]

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]

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]

The metabolic changes compounded by anorexia associated with chronic liver disease adversely affect growth in children. In many cases, this requires the administration of artificial nutritional support. It is important in this group of patients that those who are becoming nutritionally depleted are identified quickly and in those receiving artificial nutritional support, the effectiveness is monitored. The current review is an examination of methods available to assess nutritional status. These include anthropometry, methods available in the laboratory and a selection of less commonly used methods undergoing evaluation at research level. A brief discussion accompanies each technique, outlining the limitations of its use in children with chronic liver disease. The review concludes with an outline of how nutritional status should be assessed in this group of children, and suggests further research. [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]

Selenium (Se) is an essential and toxic trace mineral in animal diets. The current NRC turkey Se requirement is 0.2 µg Se/g diet for all life stages, higher than the published rat and mouse requirements. The studies that form the basis for the turkey requirement were performed over 50 years ago and based on prevention of Se-deficiency disease. With the genetic improvement of commercial turkey flocks and emerging new Se status biomarkers, we fed day-old male poults a Se-deficient (0.005 µg/g), vitamin E-adequate torula-based diet supplemented with graded levels of Se, from 0 to 5 µg/g, for 28 days. Poults supplemented with <0.05 µg/g had reduced growth, but there was no effect of high Se on growth. Se biomarkers responded hyperbolically to increasing dietary Se and reached plateaus at or before 0.4 µg/g. In deficiency, liver and kidney Se fell to <10% of Se-adequate levels. Activities of plasma GPX3; liver, kidney, pancreas and muscle GPX1; and liver, kidney, muscle and gizzard GPX4 all decreased to <10% in Se deficiency and reached plateau levels by 0.4 µg/g. In the same tissues, ≤6 out of 24 selenoprotein transcripts were downregulated to 2X Se-adequate levels in poults fed up to 5 µg/g diet. Liver Se increased to 5.6X Se-adequate levels with 5 µg/g diet. We conclude that the dietary Se level to maximize Se status biomarkers in growing turkey poults is 0.4 µg Se/g diet, double the current NRC requirement. Transcript expression is maximized at lower dietary Se levels than enzyme activities of the corresponding selenoproteins. Lastly, based on growth data, the turkey appears resistant to excess dietary Se, suggesting FDA Se supplementation limits can be safely raised. (Funded by USDA Hatch 1013496) [ABSTRACT FROM AUTHOR]

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]

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]

Purpose: In England, specialist cancer services for adolescents and young adults (young people) aged 15–24 are provided in 13 specialist units, with additional care provided in child and adult cancer units in the region. As a result of specialization, health care professionals (HCPs) have refined their competence, to deliver holistic care that has become central to the culture of young people's cancer care. We sought to understand and describe how HCPs developed this competence. Methods: We conducted a multiple case study in four regions across England in 24 hospitals. Data were collected through observation of clinical areas, shadowing members of the multidisciplinary team, and semistructured interviews with young people. Data were analyzed thematically and triangulated to draw meaning applicable to a range of contexts. Results: Young people (n = 29) and HCP (n = 41) across 24 different care settings were interviewed. Holistic competence enabled HCPs to deliver care that considered the age-specific needs of young people, including social, emotional, and psychological needs, in accordance with their life stage and psychosocial development. Development of holistic competence was facilitated by the following four factors: the environment, the experience continuum, enthusiasm, and education. Conclusion: The four factors facilitating holistic competence were interlinked. Working in a specialist/dedicated environment for young people increased HCPs' exposure to young people. This enabled them to become experienced in young people's cancer care, supported through education and training. Without frequent exposure to young people, HCPs were less able to achieve holistic competence, the impact of which was acutely felt by young people. [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: 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]

Discusses humoral immunity in children with biliary atresia splenic malformation syndrome (BASM). Incidence of cholangitis; Failure to find a detectable difference in humoral immune responses between children with BASM syndrome and non-syndromic BA; Definition of antibody production; Evaluation of the response to T-cell dependent antigens.

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]

Background: Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention.Methods: A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14-25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14-24 years.Result: Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people's cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments.Conclusion: Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'.Methods: Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference.Results: BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes.Conclusions: Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We propose this reproducible methodology as an important, enjoyable, and novel way of involving patients in research and a welcome alternative to researcher-developed acronyms. Ideally this should be carried out prior to engaging with healthcare professionals to prevent confusion around study identity. [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]

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]

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]

Aims: The overall aim of this evaluation was to look at the impact of the changes in working practices during the pandemic on nurses. This secondary analysis provided an evaluation of virtual care and being able/required to work from home. Design: This was secondary analysis of an evaluation using semi‐structured interviews. Methods: Conducted at a single National Health Service (NHS) university hospital in the United Kingdom between May and July 2020. Forty‐eight operational leads and nurses participated in semi‐structured interviews which were digitally recorded, transcribed verbatim and analysed using a framework analysis. Results: Two overarching themes emerged relating to the patient experience and nursing experience. There were both positive and negative elements associated with virtual care and remote working related to these themes. However, the majority of nurses found that virtual clinics were useful when proper resources were provided, and managerial strategies were put in place to support them. Participants felt that virtual care could benefit many but not all patient groups moving forward, and that flexibility around working from home would be desirable in the future. Conclusion: Virtual care and remote working were implemented to accommodate the restrictions imposed because of the pandemic. The benefits of these changes to nurses and patients support these being business as usual. However, clear policies are needed to ensure that nurses feel supported when working remotely and there are robust assessments in place to ensure virtual care is provided to patients who have access to the necessary technology. Impact: This was a study of the move to virtual care and remote working during the COVID‐19 pandemic. Telemedicine and flexible working were not common in the NHS prior to the pandemic but the current evaluation supports the role out of these as standard care with policies in place to ensure that nurses and patients are appropriately supported. [ABSTRACT FROM AUTHOR]

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 vital in helping children to understand the elements of a research project and to make a choice of whether or not to participate. However, the methods for obtaining assent are not well documented. Data sources Two researchers' thematic reviews of the primary researcher's field notes, taken during a study of eating problems during chemotherapy. Discussion The assent process appeared to be an enjoyable, positive experience for many children. They appeared to understand what participation entailed - that it was voluntary and that they had a choice. Conclusion When using child-centred techniques, children are aware of what being in a research study will mean to them. Implications for practice Researchers can be confident in gaining assent from children as young as five years. [ABSTRACT FROM AUTHOR]

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 vital in helping children to understand the elements of a research project and to make a choice of whether or not to participate. However, the methods for obtaining assent are not well documented. Data sources Two researchers' thematic reviews of the primary researcher's field notes, taken during a study of eating problems during chemotherapy. Discussion The assent process appeared to be an enjoyable, positive experience for many children. They appeared to understand what participation entailed - that it was voluntary and that they had a choice. Conclusion When using child-centred techniques, children are aware of what being in a research study will mean to them. Implications for practice Researchers can be confident in gaining assent from children as young as five years. [ABSTRACT FROM AUTHOR]

Backgrounds/Aims: A urinary copper (Cu) >25μmol/24h following penicillamine had a reported specificity of 98.2% and sensitivity of 88.2% in diagnosing Wilson’s disease (WD). We have re-evaluated this test. Ninety-eight subjects were studied at presentation. Methods: Thirty-eight (19 girls, 19 boys; median age 10.3years; range 5–16years) had an ultimate diagnosis of WD. Sixty (24 girls, 36 boys; median age 10.1, range 2.3–15years) had other liver disorders. Urinary Cu was estimated for 24h before (basal Cu) and for 24h whilst giving penicillamine 500mg orally 12hourly×2 (post-penicillamine Cu). Results: Both basal Cu and post-penicillamine Cu differed significantly between WD patients and controls (basal Cu: median 6.5μmol/24h, range 0.9–109μmol/24h, versus median: 0.8μmol/24h, range 0.1–19.5, p <0.0001; post-penicillamine Cu: median 36.9μmol/24h, range 1.98–219μmol/24h, versus median 12.35μmol/24h, range 0.5–49.8μmol/24h, p <0.0001). A post-penicillamine Cu >25μmol/24h was observed in 29/38 patients with WD and in 4/60 controls. 25/38 WD patients were symptomatic. Twenty-three of these and 6/13 asymptomatic siblings had a positive test. The test had a sensitivity of 76% (95% confidence interval [CI], 59.8–88.6%) and a specificity of 93% (95% CI, 83.8–98.2%). Sensitivity was better in symptomatic patients (92%, [95% CI; 74–99%]) than asymptomatic (46%, [95% CI; 19.2–74.9%]). Conclusions: This test is valuable in the diagnosis of WD with active liver disease, but is unreliable to exclude the diagnosis in asymptomatic siblings. [Copyright &y& Elsevier]