A patient-reported outcome measure for patients with pituitary adenoma undergoing transsphenoidal surgery.

PURPOSE: Pituitary adenomas affect patients' quality-of-life (QoL) across several domains, with long-term implications even following gross-total resection or disease remission. While clinical outcomes can assess treatment efficacy, they do not capture variations in QoL. We present the development and validation of a patient reported outcome measure (PROM) for patients with pituitary adenomas undergoing transsphenoidal surgery. METHODS: The COSMIN checklist informed the development of the pituitary outcome score (POS). Consecutive patients undergoing surgical treatment for suspected pituitary adenoma at a single centre were included prospectively. An expert focus group and patient interviews informed item generation. Item reduction was conducted through exploratory factor analysis and expert consensus, followed by assessment of the tool's validity, reliability, responsiveness, and interpretability. RESULTS: 96 patients with a median age of 50 years validated the POS. The final questionnaire included 25 questions with four subscales: EQ-5D-5L-QoL, Visual Symptoms, Endocrine Symptoms and Nasal Symptoms. CONCLUSION: The POS is the first validated PROM for patients undergoing transsphenoidal surgery for a pituitary adenoma. This PROM could be integrated into contemporary practice to provide patient-centred outcomes assessment for this patient group, aligning more closely with patient objectives.

Hidden disability: a study of the psychosocial impact of living with pituitary conditions.

BACKGROUND: Pituitary patients often experience psychosocial symptoms associated with their condition. AIMS: To explore the condition management experiences of pituitary patients and their psychosocial symptoms and to explore the impact of these on quality of life. METHODS: A sample of 748 individuals aged 18 to more than 65 years) completed a questionnaire relating to quality of life and the psychosocial impact of pituitary conditions. FINDINGS: Analysis of the qualitative sections using content analysis identified four themes: social isolation, emotional and behavioural issues, appearance distress and physical and cognitive effects including fatigue and pain. An overarching theme of hidden disability emerged. CONCLUSION: The study identified multiple biopsychosocial factors that impact quality of life, with symptoms not visible to others most likely to impact negatively. Nurses are well placed to provide support and information to patients about the possible psychosocial impact of pituitary conditions to enable positive adjustment.

Optimising outcomes of exercise and corticosteroid injection in patients with subacromial pain (impingement) syndrome: a factorial randomised trial.

OBJECTIVES: To compare the clinical effectiveness of (1) physiotherapist-led exercise versus an exercise leaflet, and (2) ultrasound-guided subacromial corticosteroid injection versus unguided injection for pain and function in subacromial pain (formerly impingement) syndrome (SAPS). METHODS: This was a single-blind 2×2 factorial randomised trial. Adults with SAPS were randomised equally to one of four treatment groups: (1) ultrasound-guided corticosteroid injection and physiotherapist-led exercise, (2) ultrasound-guided corticosteroid injection and an exercise leaflet, (3) unguided corticosteroid injection and physiotherapist-led exercise and (4) unguided corticosteroid injection and an exercise leaflet. The primary outcome was the Shoulder Pain and Disability Index (SPADI), collected at 6 weeks, 6 and 12 months and compared at 6 weeks for the injection interventions and 6 months for the exercise interventions by intention to treat. RESULTS: We recruited 256 participants (64 treatment per group). Response rates for the primary outcome were 94% at 6 weeks, 88% at 6 months and 80% at 12 months. Greater improvement in total SPADI score was seen with physiotherapist-led exercise than with the exercise leaflet at 6 months (adjusted mean difference -8.23; 95% CI -14.14 to -2.32). There were no significant differences between the injection groups at 6 weeks (-2.04; -7.29 to 3.22), 6 months (-2.36; -8.16 to 3.44) or 12 months (1.59; -5.54 to 8.72). CONCLUSIONS: In patients with SAPS, physiotherapist-led exercise leads to greater improvements in pain and function than an exercise leaflet. Ultrasound guidance confers no additional benefit over unguided corticosteroid injection. TRIAL REGISTRATION NUMBER: ISRCTN42399123.

Towards a greater understanding of the psychosocial impact of the symptoms of pituitary conditions.

Management of pituitary conditions can be problematic with many patients experiencing long-term psychological and social difficulties that impact on their quality of life. This study aimed to identify psychosocial symptoms associated with pituitary conditions that lead to poor quality of life and identify differences in symptomatology between patient groups. A survey using measures of psychological and social symptoms was sent to 2000 members of the Pituitary Foundation in January 2016. The survey was completed by 1062 patients (683 female), aged under 18 to over 65 years, using categorical age ranges. Physical and psychosocial symptoms including appearance issues, fatigue, anxiety and depression were reported. Using correlational and regression analyses, significant variation in symptoms were identified across gender, age range and condition type that were impairing patients' long-term functioning and impacting quality of life. There is a need for greater patient information and advice surrounding psychosocial symptoms of pituitary conditions.

Acceptability of the BATHE technique amongst GPs and frequently attending patients in primary care: a nested qualitative study.

BACKGROUND: BATHE is a brief psychosocial intervention designed for physician use in patient consultations. The technique has gained some international recognition, but there is currently limited research evidence to demonstrate its acceptability and benefits to patient care. We conducted a pilot cluster randomised controlled trial and feasibility study to explore the use of BATHE as a key component of a person-focused intervention to improve the care of frequent attending patients in UK primary care. METHODS: A nested qualitative interview study conducted within a pilot trial. The trial took place in six general practices in the South West of England. Eligible patients had been identified as being in the top 3% of attenders in the previous 12 months. General practitioners (GPs) were trained to use BATHE during a one-hour initial training session, and two top-up trainings which included feedback on implementation fidelity. GPs were asked to use BATHE with their study patients for a period of 12 months. 34 GPs were trained and documented using BATHE in a total of 577 consultations with eligible patients during the intervention period. At the end of the intervention period, GPs and study patients from the intervention practices were invited to take part in an interview. Interviews were semi-structured, audio-recorded and transcribed. Thematic analysis was used. RESULTS: Eleven GPs and 16 patients took part in post-intervention interviews. Benefits of using BATHE included making consultations more person-centred, challenging assumptions that the GP knew what was going on for the patient and their main concerns, and supporting self-management. Difficulties reported included changing existing consultation habits, identifying appropriate consultations in which to use BATHE, and organisational constraints. CONCLUSIONS: The study suggests that using BATHE is both acceptable and beneficial but also highlighted some of the difficulties GPs had incorporating BATHE into routine practice. Strategies to reduce these difficulties are needed before the extent of the potential benefits of BATHE can be fully assessed. TRIAL REGISTRATION: ISRCTN62939408 Prospectively registered on 24/06/2015.

Pituitary conditions: importance of geography and the Pituitary Foundation in patient support.

Quality of life is significantly impacted for those with pituitary conditions, and patients need support to meet ongoing physical and psychological needs. This study aimed to explore the support needs and experiences of patients with pituitary conditions in the community. Ten self-selected members of the Pituitary Foundation were interviewed about their conditions, needs and experiences. Data were analysed using thematic analysis. Secondary thematic analysis was conducted on data from a sample of 748 members of the Pituitary Foundation. Four themes were revealed, under one over-arching theme of geography: (1) life-changing diagnosis, (2) the Foundation as a source of support, (3) access to the Foundation and (4) attendance at support groups. On the basis of the findings of this study, the authors concluded that better training is required for health professionals about pituitary conditions, their long-term consequences and the need to signpost patients to wider services offering essential support.

Establishing the usefulness of the GO-QOL in a UK hospital-treated population with thyroid eye disease in the CIRTED trial.

Thyroid eye disease (TED) is a potentially sight-threatening and cosmetically disfiguring condition arising in 25-50% of patients with Graves' hyperthyroidism. CIRTED is the first study to evaluate the long-term role of radiotherapy and prolonged immunosuppression with azathioprine in treating TED, one aim of which was to validate the use of the English version of GO-QOL in an UK population with TED. In a three stage design over a 48 week period, the GO-QOL was tested and compared to a general measure of quality of life (WHOQOL-Bref). In stage 1 utilising a standard 14 day test-retest design both GO-QOL subscales achieved Cronbach's alphas demonstrating excellent validity and internal reliability (Visual Function 0.929 and 0.931; Appearance 0.888 and 0.906). In stage 2, Repeated Measures ANOVA demonstrated longitudinal validity, with both subscales of the GO-QOL showing significant change over time (Visual Function, η2 = 0.114, p < .001; Appearance, η2 = 0.069, p < .002). In stage 3 the GO-QOL showed discriminant validity at the week 48 time point, with the visual function subscale being able to detect changes in groups identified by clinicians (using BCCOM ratings of improvement or deterioration), while both subscales could detect group differences when based on participants' subjective ratings of TED noticeability and severity. The results of this project provide support for the English translation of the GO-QOL as an outcome measure for patients with moderately severe active Graves' orbitopathy/TED.

Systematic review to understand and improve care after stillbirth: a review of parents' and healthcare professionals' experiences.

BACKGROUND: 2.7 million babies were stillborn in 2015 worldwide; behind these statistics lie the experiences of bereaved parents. The first Lancet series on stillbirth in 2011 described stillbirth as one of the "most shamefully neglected" areas of public health, recommended improving interaction between families and frontline caregivers and made a plea for increased investment in relevant research. METHODS: A systematic review of qualitative, quantitative and mixed-method studies researching parents and healthcare professionals experiences of care after stillbirth in high-income westernised countries (Europe, North America, Australia and South Africa) was conducted. The review was designed to inform research, training and improve care for parents who experience stillbirth. RESULTS: Four thousand four hundred eighty eight abstracts were identified; 52 studies were eligible for inclusion. Synthesis and quantitative aggregation (meta-summary) was used to extract findings and calculate frequency effect sizes (FES%) for each theme (shown in italics), a measure of the prevalence of that finding in the included studies. Researchers' areas of interest may influence reporting of findings in the literature and result in higher FES sizes, such as; support memory making (53%) and fathers have different needs (18%). Other parental findings were more unexpected; Parents want increased public awareness (20%) and for stillbirth care to be prioritised (5%). Parental findings highlighted lessons for staff; prepare parents for vaginal birth (23%), discuss concerns (13%), give options & time (20%), privacy not abandonment (30%), tailored post-mortem discussions (20%) and post-natal information (30%). Parental and staff findings were often related; behaviours and actions of staff have a memorable impact on parents (53%) whilst staff described emotional, knowledge and system-based barriers to providing effective care (100%). Parents reported distress being caused by midwives hiding behind 'doing' and ritualising guidelines whilst staff described distancing themselves from parents and focusing on tasks as coping strategies. Parents and staff both identified the need for improved training (parents 25% & staff 57%); continuity of care (parents 15% & staff 36%); supportive systems & structures (parents 50%); and clear care pathways (parents 5%). CONCLUSIONS: Parents' and healthcare workers' experiences of stillbirth can inform training, improve the provision of care and highlight areas for future research.

Pancreas and islet transplantation: psychological themes pre- and posttransplant.

PURPOSE OF REVIEW: To date, islet and whole pancreas transplantation have been largely researched and reported separately. Therefore, for the first time, this review seeks to examine together the recently reported psychological issues as they relate to the two different types of transplantation. RECENT FINDINGS: In relation to pancreas transplantation, recent findings indicate potential issues relating to energy levels, including sleep problems; mood problems (anxiety, depression, traumatic stress); social interactions; and identity issues. Similarly, the research on islet allotransplantation (ITA) indicates mood disruptions associated with Type I diabetes mellitus (T1DM), which seem to improve as a result of treatment with ITA. SUMMARY: The review indicates a need for more research to guide effective intervention to optimize psychological recovery post islet and/or pancreas transplantation for patients with T1DM. Effective psychological intervention for this group relies on researchers eliciting more detailed knowledge of pretransplant psychosocial issues, not only in relation to how these might vary by transplant group, but also in relation to patient health status vis-à-vis microvascular complications and glycaemic control, and how these issues change across the whole transplant journey.

The use of replacement cost method to assess and manage the impacts of water resource development on Australian indigenous customary economies.

The value of functional and biologically diverse landscapes to indigenous societies is increasingly recognised in public debates about development pathways but rarely rigorously assessed in development decisions. Using the replacement cost method, we quantify the direct consumptive value of aquatic species and sites for indigenous subsistence in three Australian tropical river catchments where negligible data exists on indigenous water values and the extensive use of wild resources for food, art, craft and medicines. The results establish a baseline for assessing and monitoring the socio-economic impact of hydrological and ecological changes from water resource development. More than 90% of the gross replacement value in each catchment was accounted for by a small subset of high value species which could be used as integrated indicators of ecological and socio-economic change. The total value of species harvested was distributed across a large number of sites, justifying the need for a regional management approach to ensure the maintenance of diverse habitats for hunting and fishing. While 'value' is a cultural, context-dependent construct, studies like this one can lend legitimacy to a targeted approach to environmental and social impact assessment of water resource development proposals by calling for prioritisation of mitigation and management actions.

Ecosystem services in connected catchment to coast ecosystems: Monitoring to detect emerging trends.

There is an increasing need for long-term monitoring of ecosystems and their services to inform on-ground management. The supply of many ecosystem services relies on connections that span multiple ecosystems. Monitoring the underlying condition of interconnected ecosystems is therefore required to track effectiveness of past interventions and identify impending change. Here we test the performance of indicators of ecosystem services with the aim of identifying the time-scales over which indicators of ecosystem services responded to change. We chose a case-study of a catchment in Northern Australia, where water resource development is a threat to the river flows that support vegetation growth and the life-cycle of coastal fishery species. We developed a novel approach to performance testing that drew on state-space modelling to capture ecological dynamics, and structural equation modelling to capture covariation in indicator time series. We first quantified covariation among three ecological indicators that had time-series data: pasture biomass, vegetation greenness and barramundi catch per unit effort. Higher values of all indicators occurred in years with greater river flow. We then predicted the emergence times for each indicator, as the time taken for a trend in an indicator to emerge from the background of natural variation. Emergence times were > 10 years in all cases, quantified at 80 % and higher confidence levels. Past trends and current status of ecosystem service flows are often used by decision makers to directly inform near-term actions, particularly for provisioning services (such as barramundi catch) due to their important contribution to regional economies. We found that ecological indicators could be used to assess historical performance over decadal timespans, but not as short-term indicators of recent change. More generally, we offer an approach to performance testing of indicators. This approach could be useful for quantifying timescales of ecosystem response in systems where cross-ecosystem connections are important.

Factors Predicting Long-term Outcome and the Need for Surgery in Graves Orbitopathy: Extended Follow-up From the CIRTED Trial.

Graves orbitopathy is both disabling and disfiguring. Medical therapies to reduce inflammation are widely used, but there is limited trial data beyond 18 months of follow-up. METHODS: Three-year follow-up of a subset of the CIRTED trial (N = 68), which randomized patients to receive high-dose oral steroid with azathioprine/placebo and radiotherapy/sham radiotherapy. RESULTS: Data were available at 3 years from 68 of 126 randomized subjects (54%). No additional benefit was seen at 3 years for patients randomized to azathioprine or radiotherapy with regard to a binary clinical composite outcome measure (BCCOM), modified European Group on Graves' Orbitopathy score, or Ophthalmopathy Index.Clinical Activity Score (CAS), Ophthalmopathy Index, and Total Eye Score improved over 3 years (P < .001). However, quality of life at 3 years remained poor. Of 64 individuals with available surgical outcome data, 24 of 64 (37.5%) required surgical intervention. Disease duration of greater than 6 months before treatment was associated with increased need for surgery [odds ratio (OR) 16.8; 95% CI 2.95, 95.0; P = .001]. Higher baseline levels of CAS, Ophthalmopathy Index, and Total Eye Score but not early improvement in CAS were associated with increased requirement for surgery. CONCLUSION: In this long-term follow-up from a clinical trial, 3-year outcomes remained suboptimal with ongoing poor quality of life and high numbers requiring surgery. Importantly, reduction in CAS in the first year, a commonly used surrogate outcome measure, was not associated with improved long-term outcomes.

Addressing appearance-related distress across clinical conditions.

Evidence is accumulating about the nature and prevalence of appearance-related distress across a variety of clinical populations. Health professionals working with specific patient groups are often aware of these difficulties and their detrimental effect on quality of life and wellbeing. However, many health professionals lack knowledge and skills on how to support patients, either within the team or via referral to relevant service providers who have expertise in managing appearance-related distress. This is mainly owing to a lack of information about screening, assessment measures and available interventions. The aim of this article is to consider how health professionals can support patients who experience distress as a result of living with a long-term physical health condition that has altered their appearance. This article summarises the challenges for patients and health professionals surrounding body image, altered appearance and associated distress. Gaps in relation to screening measures, differing types of intervention, appearance-related skills training for healthcare teams, care pathways and access to services are identified. A summary of the limited range of interventions currently available has been mapped onto a stepped model of care, ranging from self-help to intensive therapies. Finally, readers are pointed to helpful resources for understanding, identifying, addressing and signposting patients with appearance-related distress.

Student nurse socialization: A model of professional discourse adoption.

AIM/OBJECTIVE: Through an exploration of student nurses and lecturers' professionalism discourses, this study illuminates influences on professional socialization and offers an appreciation of the processes of language (discourse) adoption involved. BACKGROUND: Professionalism is a complex concept to define. Nursing research has predominantly explored professionalism in clinical practice; however, the time spent university is key to professional socialization and identity development. Previous research focused on socialization in the clinical area only. This study examined how student nurses and their lecturers construct their talk regarding professionalism while at university. DESIGN: A social constructionism approach was adopted, where it is assumed that we jointly construct our world on shared assumptions and that language is central to this process. METHODS: Employing a Discourse and Social Psychology (DASP) approach to discourse analysis, seven nursing students (Adult, Child, and Mental Health fields) and eight lecturers participated in a total of 16 interviews. RESULTS: The findings indicated participants drew on several interpretative repertoires. These changed over the 3 year degree. Analysis led to development of a Model of Professional Discourse Adoption, illustrating a three phased process, resonating with theories of professional socialization in nursing. CONCLUSIONS: The study offers insights into how education strategies may support learning and teaching, and professionalism communication.

Oxygen limitation and thermal tolerance in two terrestrial arthropod species.

Recent studies of marine invertebrates and fish have suggested that lower and upper critical temperatures (CT(min) and CT(max)) are coupled by a common mechanism: oxygen and capacity limitation of thermal tolerance (OCLT). Using thermolimit respirometry, we tested the predictions of this theory for terrestrial arthropods by measuring maxima and minima for both critical temperatures and metabolic rate in two arthropods, the isopod Porcellio scaber and the beetle Tenebrio molitor, at 40%, 21%, 10% and 2.5% ambient O(2). Critical temperatures were identified as particular points on both activity and traces in four ways. In the first two instances, we identified the inflection points in regressions of absolute difference sum (ADS) residuals calculated for activity (aADS) and (VI), respectively. In the third, we visually identified the lowest point before the post-mortal peak in CO(2) release (PMV). Finally, we pinpointed the sudden drop in at death, where fell outside the 95% confidence intervals of the 5 min period immediately preceding the drop-off (CI). Minimum and maximum metabolic rates were determined using CO(2) traces, and the temperatures corresponding to these identified as T(MetMin) and T(MetMax). For both species, ambient oxygen concentration did not influence CT(min), minimum metabolic rate, or T(MetMin). By contrast, severe hypoxia (2.5% O(2)) caused a 6.9 degrees C decline in activity-based CT(max) for T. molitor and a 10.6 degrees C decline for P. scaber, relative to normoxia (21% O(2)). The magnitude of this decrease differed between methods used to estimated critical thermal limits, highlighting the need for a standard method to determine these endpoints during thermolimit respirometry. Maximum metabolic rate also declined with decreasing ambient oxygen in both species. The combination of increasing metabolic rate and oxygen limitation affected upper thermal limits in these arthropods only in severe hypoxia (2.5% O(2)). In both species, CT(min) and CT(max) responded differently to oxygen limitation, suggesting that this is not a common mechanism coupling upper and lower limits in terrestrial arthropods.

Discourse tensions: Professional socialisation into nursing within the university education system.

Starting university brings expectations of new experiences and a good social life (Morton and Tighe, 2011), however student nurse experience may not mirror these expectations. The aim of this study was to identify any indications of 'differentness' expressed in students talk, track development and changes in student language over the duration of their programme, and explore how language might situate lecturers and students within a professional socialisation process. Using Discourse Analysis (Potter and Wetherell, 1987), interviews (n = 17) were conducted with 8 lecturers and 7 volunteer student nurses multiple times over 3 years (April 2013 - August 2016). Analysis uncovered three discourse tensions, each showing resonance with students and their lecturers: The university student and the student nurse; The Nursing and Midwifery Council registrant and the lecturer; Student nurses as consumers of their university education. Students did not appear to align themselves with the university after experiencing clinical practice, and lecturers' language attempted to position students away from traditional student experiences to protect professional standards.

A consultation-level intervention to improve care of frequently attending patients: a cluster randomised controlled feasibility trial.

BACKGROUND: Frequent attenders (FAs) to primary care receive considerable NHS resources without necessarily gaining benefit, and may even be harmed. AIM: To assess the feasibility of a consultation-level intervention to improve care and address service use of FAs. DESIGN & SETTING: A cluster randomised controlled feasibility trial was undertaken. The study used a mixed-methods process evaluation and took place in six practices in England. METHOD: All practices screened the top 3% of all attending patients over the previous 12 months for eligibility. Following randomisation, intervention patients were matched with named GPs, trained to use the Background, Affect, Trouble, Handling, Empathy (BATHE) technique during consultations. Telephone consultations were encouraged. Feasibility outcomes assessed were recruitment, retention, data collection and completeness, implementation fidelity, and acceptability. RESULTS: A total of 599/1328 (45.1%) FAs were eligible. Four practices were randomised to the intervention (n = 451) and two to usual care (n = 148). A total of 96 (23.7%) patients were recruited to complete questionnaires. Retention and completeness of data were good; for example, 76% of those agreeing to complete questionnaires did so at the 12-month assessment point. Thirty-four GPs were trained and delivered BATHE ≥1 times to 50.1% of patients (n = 577 consultations). There were minimal increases in continuity and telephone consultations. Patients were positive about the intervention, but noticed little change in their care. Despite valuing BATHE, low adherence to training was indicated and GPs used it less than anticipated. CONCLUSION: It was feasible to identify FAs and collect trial data. GPs were keen to engage and there was evidence that the BATHE technique was taken into practice. Optimising training is likely to improve fidelity. The intervention was low cost and low risk.

Understanding rivers and their social relations: A critical step to advance environmental water management.

River flows connect people, places, and other forms of life, inspiring and sustaining diverse cultural beliefs, values, and ways of life. The concept of environmental flows provides a framework for improving understanding of relationships between river flows and people, and for supporting those that are mutually beneficial. Nevertheless, most approaches to determining environmental flows remain grounded in the biophysical sciences. The newly revised Brisbane Declaration and Global Action Agenda on Environmental Flows (2018) represents a new phase in environmental flow science and an opportunity to better consider the co-constitution of river flows, ecosystems, and society, and to more explicitly incorporate these relationships into river management. We synthesize understanding of relationships between people and rivers as conceived under the renewed definition of environmental flows. We present case studies from Honduras, India, Canada, New Zealand, and Australia that illustrate multidisciplinary, collaborative efforts where recognizing and meeting diverse flow needs of human populations was central to establishing environmental flow recommendations. We also review a small body of literature to highlight examples of the diversity and interdependencies of human-flow relationships-such as the linkages between river flow and human well-being, spiritual needs, cultural identity, and sense of place-that are typically overlooked when environmental flows are assessed and negotiated. Finally, we call for scientists and water managers to recognize the diversity of ways of knowing, relating to, and utilizing rivers, and to place this recognition at the center of future environmental flow assessments. This article is categorized under: Water and Life > Conservation, Management, and Awareness Human Water > Water Governance Human Water > Water as Imagined and Represented.

Providing appropriate health care to people with learning disabilities.

People with learning disabilities often challenge health services and their carers. Recent reports identify the tragic consequences of services failing to identify and meet this population's health needs. This article integrates a case study of the planned hospital admission of a woman with learning disabilities. A nine-step strategy is adopted to proactively support the patient and associated disability, and general nurse carers to enable both a positive experience and a healthy outcome for all those involved. It is an example of how collaborative working, good reciprocal communication and creative thinking are imperative to effective support.