Psychosocial Risk Factors for Health-Related Quality of Life in Adult Congenital Heart Disease.

BACKGROUND: There is variability in the impact of adult congenital heart disease (ACHD) on health-related quality of life (HRQoL). A greater insight into the impact of ACHD may be gained from investigating HRQoL in various diagnostic groups and considering the importance of psychosocial risk factors for poor HRQoL. OBJECTIVE: We compared the HRQoL of people with ACHD with normative data from the general population and among 4 diagnostic groups and identified risk factors for poor HRQoL in ACHD from a comprehensive set of sociodemographic, clinical, and psychosocial factors. METHODS: We conducted a cross-sectional study with 303 participants from 4 diagnostic groups Simple, Tetralogy of Fallot, Transposition of the Great Arteries, Single Ventricle who completed measures of illness perceptions, coping, social support, mood, and generic and disease-specific HRQoL. Data were analyzed using 1-sample t tests, analysis of variance, and hierarchical multiple regressions. RESULTS: There was diminished psychosocial HRQoL in the Simple group compared with the general population. Consistently significant risk factors for poor HRQoL included younger age, a perception of more severe symptoms due to ACHD, depression, and anxiety. Clinical factors were poor predictors of HRQoL. CONCLUSIONS: The findings highlight the need to develop intervention studies aiming to improve HRQoL in people with ACHD and the routine assessment of illness perceptions and mood problems during key periods in people's lives. This will help address patient misconceptions that could be tackled by clinicians or specialist nurses during routine outpatient appointments and identify people in need of psychological support.

Electronic patient-reported monitoring of symptoms during follow-up of ovarian cancer patients: a feasibility study.

BACKGROUND: Ovarian cancer patients require monitoring for relapse. Innovative follow-up methods are increasingly being explored. An electronic patient-reported outcome (ePRO) follow-up pathway was developed for women treated for ovarian cancer. This feasibility study explored patient acceptability and compliance. METHODS: A single-arm non-blinded prospective feasibility study was undertaken at two hospitals. Participants were women who had completed treatment for ovarian cancer whose clinician was happy for them to be monitored remotely. Automated 3-monthly reminders were sent to participants to complete an ePRO questionnaire and obtain blood tests. Participants were reviewed over the phone by their clinical nurse specialist instead of attending clinic-based follow-up. The primary outcome was compliance (expected ePRO completions/blood tests) across the 12-month study period. Secondary outcomes were recruitment, attrition, resource use, symptom severity/alerts and patient acceptability. RESULTS: Twenty-four women consented (50% consent rate), and 13 remained on study at 12 months. Seven women relapsed, 3 chose to withdraw, and 1 withdrew for other clinical reasons. ePRO compliance was high and consistent at 75-82%, although the two hospitals differed. Adherence to the clinical protocol was evident for blood tests and contacts with staff (fewer visits, more phonecalls compared to an earlier audit). End-of-study feedback indicated high patient satisfaction. CONCLUSIONS: Remote ePRO follow-up for ovarian cancer is feasible and acceptable to patients who are able and willing to participate. However, the low recruitment rate (ineligible + declined) indicate it is not suitable/acceptable to all patients immediately post-treatment. Further large-scale research and implementation work is required, especially in a post-COVID era. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT02847715 (first registered 19/05/2016).

'It made me feel part of the team, having my homework to do' - women and specialist nurse experiences of remote follow-up after ovarian cancer treatment: a qualitative interview study.

PURPOSE: Ovarian cancer patients require monitoring for relapse post-treatment, and alternative follow-up pathways are increasing, which require in-depth exploration to ensure acceptability and inform implementation. This study aimed to explore women and specialist nurses' experiences of participating in a feasibility study of an electronic patient-reported outcome (ePRO) follow-up pathway after ovarian cancer treatment. METHODS: The feasibility study incorporated an ePRO questionnaire, blood test and telephone consultation with a specialist nurse, instead of face-to-face hospital visits. All women and the nurses involved were invited to take part in nested semi-structured interviews. Interviews were recorded and transcripts analysed using framework analysis. RESULTS: Twenty interviews were conducted (16 out of 24 women who took part in the feasibility study and all 4 nurses). Four themes were identified: (1) readiness and motivators, (2) practicalities and logistics, (3) personal impact and (4) future role. An overarching theme highlighted how women strived to seek reassurance and gain confidence. Most women and nurses were positive about the ePRO pathway and would happily continue using it. CONCLUSION: This work provides invaluable insight into the experiences of women on remote ePRO follow-up post-treatment. Important logistic and implementation issues were identified, which should inform future large-scale work to introduce and evaluate remote ePRO methods in cancer follow-up. This work highlights the key factors influencing women's readiness and acceptability of an ePRO pathway, and how services should be carefully designed to ensure patients feel reassured and confident post-treatment. Furthermore, it highlights that flexibility and patient preference should be considered in remote service delivery. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT02847715 (first registered 19 May 2016).

'We do need to keep some human touch'-Patient and clinician experiences of ovarian cancer follow-up and the potential for an electronic patient-reported outcome pathway: A qualitative interview study.

OBJECTIVE: This study aimed to explore experiences of follow-up after treatment and views on an electronic patient-reported outcome (ePRO) pathway among ovarian cancer patients and clinicians. METHODS: Semi-structured qualitative interviews were conducted with clinicians and patients previously treated for ovarian cancer. Interviews explored experiences of the current follow-up pathway, patients' needs and views on an ePRO pathway enabling patients to report symptoms online rather than attend clinic-based appointments. Transcripts were analysed using framework analysis. RESULTS: Sixteen patients and 10 clinicians participated from four hospitals in England. Four key themes were identified: transition into follow-up, key features of effective follow-up, issues in follow-up and views of ePRO. Both patients and clinicians saw benefits of an ePRO pathway alongside continued access to specialist support and discussed various practicalities (e.g., frequency, introduction and communication). Technology concerns and feelings of abandonment were highlighted as barriers. The proposed impact on clinical and individual patient outcomes was discussed. CONCLUSION: Patient and clinician views on follow-up and an ePRO pathway informed key recommendations on the development/introduction of ePRO follow-up. Technology use in healthcare will continue to grow and may offer solutions to facilitate responsive and tailored care. Further research should explore the safety, experiences and acceptability of ePRO follow-up.

Online monitoring of patient self-reported adverse events in early phase clinical trials: Views from patients, clinicians, and trial staff.

BACKGROUND/AIMS: New classes of cancer drugs bring a range of unknown and undesirable adverse events. Adverse event monitoring is essential in phase I trials to assess toxicity and safety. In phase II, the focus is also on efficacy but robust data on adverse events continue to inform the safety and the adverse event profile. Standard, clinician-led monitoring has been shown to underestimate patients' symptoms. Hence, patient-reported adverse event monitoring has been argued to complement and improve the information on adverse events in early phase clinical trials. With advances in information technology, real-time patient self-reported adverse events in trials are feasible. This study explored the experiences and procedures for reporting adverse events in early phase trials among patients, clinical staff, and trial staff, and their views on using an electronic patient-reported outcome adverse event system in this setting. METHODS: Qualitative interviews were conducted with patients, purposively sampled across ages, gender, and different phases of trials, and with clinical and trial-related staff involved in early phase trials (e.g. consultants, research nurses, hospital-based trial assistants/data managers, trial unit management staff). Interviews explored patient experiences and views on current adverse event reporting processes and electronic patient-reported outcome adverse event reporting. Framework analysis techniques were used to analyse the data. RESULTS: Interviewees were from two hospital trusts with early phase portfolios in England and a trial unit, and included sixteen patients, five consultants, four research nurses, five hospital-based trial staff, and two trial unit staff. Interviews identified three key themes (patient experiences, data flow, and views on electronic patient-reported outcome adverse event reporting). Stakeholders emphasised the intensity of trials for patients and the importance of extensive information provision within the uncertainty of early phase trial drugs. Regular face-to-face appointments for patients supplemented by telephone contact aimed to capture any adverse events. Delayed or under-reporting of mild- or low-severity symptoms was evident among patients. Hospital-based staff highlighted the challenges of current data collection including intense timescales, monitoring by trial sponsors, and high workload. Positive views on electronic patient-reported outcome adverse events highlighted that this could provide a more comprehensive and accurate view on the side effects of new drugs. Clinical staff emphasised patient safety and the need for clear responsibilities for monitoring. The need for careful decision-making about data flow and symptom attribution was highlighted; with trial unit staff emphasising the need for clinician review. CONCLUSION: Technology advances mean it is timely to explore the benefits and challenges of electronic patient-reported outcome adverse event reporting. This is a complex area warranting further consideration within the trial community. We have developed an online patient self-reporting tool and a small pilot with early phase trial patients is underway.

Investigations of Carotid Stenosis to Identify Vulnerable Atherosclerotic Plaque and Determine Individual Stroke Risk.

Selection of patients with atherosclerotic carotid stenosis for revascularization is mainly based on the degree of luminal narrowing of the carotid artery. However, identification of other features of plaque apart from the degree of stenosis could enable better selection for intervention if they are also associated with the occurrence of stroke. Before these risk factors can possibly play a role in treatment decisions, their prognostic value needs to be proven. The purpose of this narrative review is to summarize current knowledge regarding the risk factors for stroke in patients with carotid stenosis, how they can be determined, and to what extent they predict stroke, based on recent literature. References for this review were identified by searches of PubMed between 1995 and October, 2016 and references from relevant articles. For each topic in this review different relevant search terms were used. The main search terms were 'carotid stenosis', 'atherosclerosis', 'stroke risk', and 'vulnerable plaque'. Language was restricted to English. The final reference list was generated on the basis of relevance to the topics covered in this review.

Cognitive dysfunction in adult CHD with different structural complexity.

OBJECTIVE: We carried out a cross-sectional study to assess cognitive function in a sample of adult CHD patients, within the Functioning in Adult Congenital Heart Disease study London. The association between cognitive functioning and disease complexity was examined. METHODS: A total of 310 patients participated in this study. Patients were classified into four structural complexity groups - tetralogy of Fallot, transposition of the great arteries, single ventricle, and simple conditions. Each patient underwent neuropsychological assessment to evaluate cognitive function, including memory and executive function, and completed questionnaires to assess depression and anxiety. RESULTS: Among all, 41% of the sample showed impaired performance (>1.5 SD below the normative mean) on at least three tests of cognitive function compared with established normative data. This was higher than the 8% that was expected in a normal population. The sample exhibited significant deficits in divided attention, motor function, and executive functioning. There was a significant group difference in divided attention (F=5.01, p=0.002) and the mean total composite score (F=5.19, p=0.002) between different structural complexity groups, with the simple group displaying better cognitive function. CONCLUSION: The results indicate that many adult CHD patients display impaired cognitive function relative to a healthy population, which differs in relation to disease complexity. These findings may have implications for clinical decision making in this group of patients during childhood. Possible mechanisms underlying these deficits and how they may be reduced or prevented are discussed; however, further work is needed to draw conclusive judgements.

Enhancing the quality of oral nutrition support for hospitalized patients: a mixed methods knowledge translation study (The EQONS study).

AIM: The aim of this study was to report a multifaceted knowledge translation intervention to facilitate use of the Malnutrition Universal Screening Tool and innovation in nutritional care for patients at risk of malnutrition. BACKGROUND: Malnutrition among hospitalized patients is a widespread problem leading to adverse health outcomes. Despite evidence of the benefits of malnutrition screening and recommendations for achieving good nutrition, shortfalls in practice continue. DESIGN: A mixed method integrated knowledge translation study. METHODS: The knowledge translation intervention comprised nutrition champions supported by knowledge translation facilitators and an action planning process. Data collection was undertaken over 18 months between 2011-2012 in a hospital in England. Data comprised observation of mealtimes, audit of patient records, survey of nurses and semi-structured interviews with nutrition champions, knowledge translation facilitators, senior ward nurses and nurse managers. FINDINGS: Statistically significant relationships (Chi Square) were observed between self-reported confidence of nurses (a) to assess patients using the Malnutrition Universal Screening Tool, (b) to teach colleagues how to use the Malnutrition Universal Screening Tool and (c) to ensure that patients were assessed within 24 hours of admission. Ward-based nutrition champions facilitated successful innovation in nutrition support. Contextual factors operating at micro (ward), meso (organization) and macro (healthcare system) levels acted as barriers and enablers for change. CONCLUSION: Nutrition champions were successful in increasing the timely assessment of patients at risk of malnutrition and promoting innovation in nutritional care. Support from knowledge translation facilitators helped nutrition champions develop their role and work collaboratively with senior ward nurses to implement action plans for improving nutrition.

Dissociation mediates the relationship between childhood maltreatment and subclinical psychosis.

More than a third of the population report childhood adversity, and these experiences are associated with an increased risk of clinical and subclinical psychosis. The reason why some people go on to develop mental health problems and others do not is a key question for study. It has been hypothesized that dissociative processes mediate the relationship between early adversity and psychosis. The current study assessed whether dissociation, and specifically depersonalization (one component of dissociation), plays a mediating role in the relationship between childhood maltreatment and both hallucination proneness and delusional ideation. The study used a cross-sectional design and recruited a student sample to assess these relationships in a nonclinical group. Dissociation mediated the relationship between early maltreatment and both hallucination proneness and delusional ideation. In terms of specific dissociative processes, depersonalization did not mediate hallucination proneness or delusional ideation. Absorption mediated hallucination proneness; dissociative amnesia (negatively) and absorption mediated delusional ideation. It is likely that dissociation interferes with the encoding of traumatic information in nonclinical as well as clinical groups and in certain ways. Absorption may be particularly relevant. For some people, traumatic memories may intrude into conscious awareness in adulthood as psychotic-type experience.

An evaluation of the implementation of Advanced Nurse Practitioner (ANP) roles in an acute hospital setting.

AIM: To evaluate the impact of implementing Advanced Nurse Practitioner roles on patients, staff members and organizational outcomes in an acute hospital. BACKGROUND: The worldwide development of advanced practice roles in nursing has been influenced by increasing demands and costs of health care. A key issue in the UK has been the reduction in hours junior doctors can work. While there is evidence these roles can have a positive impact in a variety of clinical specialties, little is known about the impact advanced nurses substituting for junior doctors can have on patients, staff members and organizational outcomes in general hospital care settings. DESIGN: Collective case study. METHODS: A collective case study in a district general hospital in England was undertaken in 2011-2012. Interviews with strategic stakeholders (n = 13) were followed by three individual case studies. Each case study represented the clinical area in which the roles had been introduced: medicine, surgery and orthopaedics and included interviews (n = 32) and non-participant observation of practice. FINDINGS: The ANPs had a positive impact on patient experience, outcomes and safety. They improved staff knowledge, skills and competence and enhanced quality of working life, distribution of workload and team-working. ANPs contributed to the achievement of organizational priorities and targets and development of policy. CONCLUSION: ANPs undertaking duties traditionally performed by junior doctors in acute hospital settings can have a positive impact on a range of indicators relating to patients, staff members and organizational outcomes which are highly relevant to nursing.

What does good care look like to people living with congenital heart disease in the 21st century? Qualitative online, asynchronous discussion forums.

OBJECTIVES: As part of a wider study, our aim was to elicit perspectives of people with congenital heart disease (CHD) and/or their parents/carers about their experiences of healthcare and what is important to them when receiving care. DESIGN AND SETTING: A qualitative study involving a series of closed, asynchronous, online discussion forums underpinned by an interpretivist framework and set up and moderated by three patient charities via their Facebook pages. PARTICIPANTS: People with CHD and parents/carers of people with CHD from the UK. RESULTS: Five forums were run for 12-24 weeks across the three charities, and 343 participants signed up to the forums. Four linked themes related to processes of care were identified following thematic analysis of the transcripts: relationships and communication; access and coordination; experience of discrete episodes of care and psychological support. These impacted how care was experienced and, for some patients, outcomes of CHD and its treatment as well as broader health outcomes. In addition, context relating to stages of the patient journey was described, together with patient-related factors such as patients' knowledge and expertise in their own condition. CONCLUSIONS: People with CHD and their parents/carers want individualised, person-centred care delivered within an appropriately resourced, multidisciplinary service. Although examples of excellent care were provided it is evident that, from the perspective of patients and parents/carers, some National Health Service Standards for people with CHD were not being met.

Outcomes of the LEAP feasibility trial-A low-threshold, exercise programme with protein supplementation to target frailty and poor physical functioning in people experiencing homelessness and addiction issues.

BACKGROUND: People experiencing homelessness are more likely to experience poor health with physical functioning deficits and frailty commonly reported. It is not well known how strategies to target physical functioning deficits and frailty work in practice in this group. The primary aim of this study was to explore the feasibility of an exercise intervention with protein supplementation to target physical functioning and frailty in people experiencing homelessness evaluated by recruitment and retention rates, adherence to the exercise sessions and protein supplement, adverse effects, programme feedback and characteristics of non-returners, sporadic and frequent attenders. The secondary aim was to evaluate changes in effectiveness outcomes of grip strength, muscle mass, lower extremity physical function, pain, frailty, and risk of malnutrition. METHOD: This prospective single-arm study evaluated the feasibility of a 16-week rolling, low-threshold, 'drop-in' once weekly exercise programme with protein supplementation. The main recruitment site was a day-service centre for people who are homeless. Feasibility was assessed by the recruitment and retention rates, adherence to the exercise sessions and protein supplement as well as adverse effects, programme feedback and evaluation of characteristics of non-returners, sporadic (≤50% of available sessions) and frequent attenders (≥50% of available sessions). Effectiveness outcomes included pain (Visual Analogue Scale), physical functioning and performance (hand-grip dynamometry, limb circumference, the Short Physical Performance Battery), frailty (SHARE-FI and Clinical Frailty Scale) and nutritional status (Mini Nutritional Assessment). RESULTS: Thirty-one participants were recruited mean (SD) age 45(16) years. There was a recruitment rate of a median (IQR) of 2(1-3) new participants per week. The retention rate was 45% (n = 14) to the main recruitment site. Adherence to the exercise sessions and nutritional intervention was 90% and 100% respectively. Three adverse events were recorded during 74 interventions over the 16-week programme. The acceptability of the programme was highlighted in participant feedback. Characteristics of frequent returners (≥50%) were older age, female, more stably housed and more stable in addiction. The programme did not induce any changes in effectiveness outcomes. CONCLUSION: The feasibility of this programme was demonstrated. Overall, the programme was well received with higher retention rates in older participants, females, those more stably housed and those stable in addiction. A higher powered, more intense programme is needed to demonstrate programme effectiveness.

The feasibility and acceptability of an app-based intervention with brief behavioural support (APPROACH) to promote brisk walking in people diagnosed with breast, prostate and colorectal cancer in the UK.

INTRODUCTION: Increased moderate to vigorous physical activity (MVPA) can improve clinical and psychosocial outcomes for people living with and beyond cancer (LWBC). This study aimed to assess the feasibility and acceptability of trial procedures in a pilot randomised controlled trial (RCT) of a theory-driven app-based intervention with behavioural support focused on promoting brisk walking (a form of MVPA) in people LWBC (APPROACH). METHODS: Participants diagnosed with breast, prostate or colorectal cancer were recruited from a single UK hospital site. Assessments at baseline and 3 months included online questionnaires, device-measured brisk walking (activPAL accelerometer) and self-reported weight and height. Participants were randomised to intervention or control (care as usual). The intervention comprised a non-cancer-specific app to promote brisk walking (National Health Service 'Active 10') augmented with print information about habit formation, a walking planner and two behavioural support telephone calls. Feasibility and acceptability of trial procedures were explored. Initial estimates for physical activity informed a power calculation for a phase III RCT. A preliminary health economics analysis was conducted. RESULTS: Of those medically eligible, 369/577 (64%) were willing to answer further eligibility questions and 90/148 (61%) of those eligible were enrolled. Feasibility outcomes, including retention (97%), assessment completion rates (>86%) and app download rates in the intervention group (96%), suggest that the trial procedures are acceptable and that the intervention is feasible. The phase III RCT will require 472 participants to be randomised. As expected, the preliminary health economic analyses indicate a high level of uncertainty around the cost-effectiveness of the intervention. CONCLUSIONS: This pilot study demonstrates that a large trial of the brisk walking intervention with behavioural support is both feasible and acceptable to people LWBC. The results support progression onto a confirmatory phase III trial to determine the efficacy and cost-effectiveness of the intervention.

The development of a framework for evaluating the impact of nurse consultant roles in the UK.

AIM: To develop a framework to evaluate the impact of nurse consultants on patient, professional and organizational outcomes and identify associated indicators of impact. BACKGROUND: Since nurse consultants were introduced into the UK in 2000, there has been growing interest in demonstrating their impact, although robust evidence of impact is lacking. Existing frameworks for evaluating the impact of advanced practice roles do not cover the four dimensions of the nurse consultant role sufficiently. DESIGN: Multiple case study. METHOD: Individual case studies of six nurse consultants in England were undertaken between December 2009-October 2010. Each case study involved interviews with the nurse consultant, healthcare staff, managers, patients and carers. Interviews explored participants' perceptions of the impact of the nurse consultant and indicators of actual and/or potential impact. Data were analysed using framework approach. FINDINGS: Three domains of impact of nurse consultant roles were identified: clinical significance, professional significance and organizational significance. Each domain included three to four indicators of impact. All nurse consultants showed some evidence of impact in all three domains although the primary focus varied across the different nurse consultants. Due to the wide diversity in nurse consultant roles there was little commonality in the specific indicators of impact across all nurse consultants. CONCLUSION: The framework for capturing the impact of nurse consultants could be used by researchers and by nurse consultants to demonstrate their impact. Further research is required to assess the suitability of the framework for capturing the impact of other advanced practice roles.

Quality of life support in advanced cancer-web and technological interventions: systematic review and narrative synthesis.

BACKGROUND: As treatments continue to progress, patients with advanced cancer are living longer. However, ongoing physical side-effects and psychosocial concerns can compromise quality of life (QoL). Patients and physicians increasingly look to the internet and other technologies to address diverse supportive needs encountered across this evolving cancer trajectory. OBJECTIVES: 1. To examine the features and delivery of web and technological interventions supporting patients with advanced cancer. 2. To explore their efficacy relating to QoL and psychosocial well-being. METHODS: Relevant studies were identified through electronic database searches (MEDLINE, PsychINFO, Embase, CINAHL, CENTRAL, Web of Science and ProQuest) and handsearching. Findings were collated and explored through narrative synthesis. RESULTS: Of 5274 identified records, 37 articles were included. Interventions were evaluated within studies targeting advanced cancer (13) or encompassing all stages (24). Five subtypes emerged: Interactive Health Communication Applications (n=12), virtual programmes of support (n=11), symptom monitoring tools (n=8), communication conduits (n=3) and information websites (n=3). Modes of delivery ranged from self-management to clinically integrated. Support largely targeted psychosocial well-being, alongside symptom management and healthy living. Most studies (78%) evidenced varying degrees of efficacy through QoL and psychosocial measures. Intervention complexity made it challenging to distinguish the most effective components. Incomplete reporting limited risk of bias assessment. CONCLUSION: While complex and varied in their content, features and delivery, most interventions led to improvements in QoL or psychosocial well-being across the cancer trajectory. Ongoing development and evaluation of such innovations should specifically target patients requiring longer-term support for later-stage cancer. PROSPERO REGISTRATION NUMBER: CRD42018089153.

Scoping review on Physical Health Conditions in Irish Travellers (Mincéiri).

OBJECTIVE: The objective of this scoping review was to collate physical health conditions in Mincéiri-Irish Travellers. DESIGN: Scoping review. SEARCH STRATEGY AND CHARTING METHOD: MEDLINE/PubMed, EMBASE, PEDro, AMED, CINAHL, PsycINFO, SCOPUS as well as reports and grey literature were searched for primary data reporting physical health conditions of Irish Travellers up to 4 April 2023. Data was extracted, described and organised meaningfully into tables according to reported physical health conditions. ELIGIBILITY CRITERIA: The population was Travellers. The concept referred to physical health conditions. The context was Irish Travellers based in any location or setting. Exclusion criteria was data/research other than primary data relating to physical health conditions of Irish Travellers. RESULTS: From 198 citations generated from the database search, 11 unique studies (20 reports) were included in this scoping review, including n=7397 participants. Driven by the data, physical health conditions were categorised into cardiovascular diseases, respiratory diseases, injuries/musculoskeletal/arthritic disorders, genetic disorders and gut/bowel conditions. This review showed that the metabolic syndrome, asthma, bronchitis, tuberculosis and intentional injuries were 2-3 times more prevalent in Irish Travellers compared with the background population. Genetic conditions were also described in a proportion of Travellers. CONCLUSIONS: Overall, Irish Travellers experience a disproportionate burden of physical health conditions compared with background populations. Healthcare providers need to be aware of the unique physical health burden experienced by many Irish Travellers. Multifaceted strategies are needed to improve the health profile of this vulnerable and marginalised group.

Development of a research mentorship guide and consensus statement for low- and middle-income countries: Results of a modified Delphi process.

BACKGROUND: Institutional research mentorship is a form of mentorship whereby institutions foster mentor-mentee relationships. Research mentorship improves research effectiveness and supports relationships. However, resources are needed in order to institutionalize research mentorship tailored to low- and middle- income countries (LMICs). The aim of this study was to develop a consensus document on institutionalizing research mentorship through a modified Delphi process as part of the practical guide development process. METHODS: This study used a two-round modified Delphi process, which is an iterative, structured approach of consensus decision making. Each participant was asked about a series of items related to research mentorship using Likert scale questions. Agreement for each item was pre-defined as ≥80% of participants rating the item as "agree" or "strongly agree." The items that reached agreement, were then discussed during round two at an in-person conference in Ethiopia. A separate group of individuals only participated virtually. For the final consensus survey, response rates and commenting rates (participants who wrote two or more comments) were compared among conference and non-conference participants. RESULTS: The Delphi process led to the inception of three main themes in terms of developing research mentorship: leveraging existing resources, measuring and evaluating institutional mentorship, and encouraging a research mentorship life cycle. During the virtual first round, 59% (36/61) participants who were emailed completed the survey. In the second round, conference participants had a response rate of 79% (11/14) compared to non-conference participants with a response rate of 45% (21/47). Conference participants had a 100% (11/11) commenting rate whereas non-conference participants had a 38% (8/21) commenting rate. This study achieved consensus in both survey rounds for all 35 items on the consensus document. CONCLUSIONS: The data suggest that an in-person conference may increase participant engagement. The consensus developed through a modified Delphi method directly informed a practical guide on institutionalizing research mentorship in LMICs.

Fatigue, quality of life and associations with adherence to the World Cancer Research Fund guidelines for health behaviours in 5835 adults living with and beyond breast, prostate and colorectal cancer in England: A cross-sectional study.

BACKGROUND: Many individuals living with and beyond cancer (LWBC) have ongoing quality of life (QoL) issues, including fatigue. The World Cancer Research Fund (WCRF) provides health behaviour recommendations for people LWBC, and there is some evidence linking adherence to these with improved QoL. METHODS: Adults LWBC (specifically breast, colorectal or prostate cancer) completed a survey covering health behaviours (diet, physical activity, alcohol consumption and smoking), fatigue (FACIT-Fatigue Scale, version 4) and a broad measure of QoL (EQ-5D-5L descriptive scale). Participants were categorised as meeting/not meeting WCRF recommendations, using the following cut-offs classified as meeting the guidelines: ≥150 min physical activity/week, fruit and vegetables (≥5 portions/day), fibre (≥30 g fibre per day), free sugar (<5% of total calories from free sugar), fat (<33% total energy), red meat (<500 g/week), processed meat (none), alcohol consumption (<14 units/week) and not a current smoker. Logistic regression analyses explored associations between WCRF adherence and fatigue and QoL issues, controlling for demographic and clinical variables. RESULTS: Among 5835 individuals LWBC (mean age: 67 years, 56% female, 90% white, breast 48%, prostate 32% and colorectal 21%), 22% had severe fatigue and 72% had 1+ issue/s on the EQ-5D-5L. Adhering to physical activity recommendations (odds ratio [OR] = 0.88, confidence interval [CI] = 0.77-0.99), meeting various dietary recommendations (fruit and vegetables OR = 0.79; CI = 0.68-0.91, free sugar OR = 0.85; CI = 0.76-0.96, fat OR = 0.71; CI = 0.62-0.82, red meat OR = 0.65; CI = 0.50-0.85) and not smoking (OR = 0.53, CI = 0.41-0.67) were associated with decreased odds of experiencing severe fatigue. Adhering to physical activity guidelines (OR = 0.71, CI = 0.62-0.82) was also associated with decreased odds of having 1+ QoL issue/s. CONCLUSIONS: Adherence to various WCRF recommendations, particularly the recommendation for physical activity, was associated with less fatigue and better QoL in a large UK cohort of people living with and beyond breast, colorectal or prostate cancer. Multi-component interventions designed to support people LWBC to improve health behaviours, in line with the levels recommended by the WCRF, may also improve QoL.

The shifting nature of women's experiences and perceptions of ductal carcinoma in situ.

AIM: This paper is a report of a descriptive qualitative study of the evolution of women's perceptions and experiences of ductal carcinoma in situ from the period near to diagnosis to 1 year later. BACKGROUND: Ductal carcinoma in situ is a non-invasive breast condition where cancer cells are detected but confined to the ducts of the breast. With treatment, the condition has a positive prognosis but ironically patients undergo treatment similar to that for invasive breast cancer. There is a lack of longitudinal qualitative research studying women's experiences of ductal carcinoma in situ, especially among newly diagnosed patients, and how experiences change over time. METHODS: Forty-five women took part in an initial interview following a diagnosis of ductal carcinoma in situ and 27 took part in a follow-up interview 9-13 months later. Data were collected between January 2007 and October 2008. Transcripts were analysed using a hybrid approach to thematic analysis. FINDINGS: Women's early perceptions of ductal carcinoma in situ merged and sometimes conflicted with their lay beliefs of breast cancer. Perceptions and experiences of the condition shifted over time. These overriding aspects were evident in four themes identified across the interviews: (i) perceptions of ductal carcinoma in situ vs. breast cancer, (ii) from paradox to acceptance, (iii) personal impact, and (iv) support and interactions with others. CONCLUSION: This study represents one of the few longitudinal qualitative studies with newly diagnosed patients, capturing women's initial and shifting experiences and perceptions of the condition. The issues identified need to be recognized in clinical practice and supported appropriately.

Evaluation of the impact of nurse consultant roles in the United Kingdom: a mixed method systematic literature review.

AIM: This paper reports a mixed methods systematic review examining the impact of nurse consultant roles in adult healthcare settings, with a view to identifying indicators for demonstrating their impact on patient and professional outcomes. BACKGROUND: Nurse consultants were introduced in England in 2000 with the intention to achieve better outcomes for patients by improving quality and services. Previous studies have investigated the impact of nurse consultants, but attempts to amalgamate this evidence have been methodologically limited. Since these reviews were published, the importance of demonstrating the contribution of nurse consultants has prompted new research. A robust review of the evidence is now required. DATA SOURCES: A broad search strategy was adapted for eight databases. Grey literature was sought from various sources. REVIEW METHODS: Quantitative and qualitative studies were included. Study quality was assessed using appropriate instruments. Cross-study synthesis combined the quantitative and qualitative findings in relation to the dimensions of impact identified. Measures of impact were mapped against a framework for assessing clinical and professional outcomes. RESULTS: Thirty-six studies were included. The findings suggest a largely positive influence of nurse consultants on a range of clinical and professional outcomes, which map onto the proposed framework of impact. However, there was very little robust evidence and the methodological quality of studies was often weak. CONCLUSION: Further robust research is required to explore nurse consultants' impact on patient and professional outcomes. The proposed framework for assessing impact could be used to guide future research and assist nurse consultants assess their impact.