NHS Sites Research Articles

Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research.

BackgroundVariation in provision of palliative care in kidney services and practitioner concerns to provide equitable access led to the development of this study which focussed on the perspectives of South Asian patients and their care providers. As people with a South Asian background experience a higher risk of Type 2 Diabetes (T2DM) and end stage kidney failure (ESKF) compared to the majority population but wait longer for a transplant, there is a need for end of life care to be accessible for this group of patients. Furthermore because non English speakers and people at end of life are often excluded from research there is a dearth of research evidence with which to inform service improvement. This paper aims to explore issues relating to the process of recruitment of patients for a research project which contribute to our understanding of access to end of life care for ethnic minority patients in the kidney setting.MethodsThe study employed an action research methodology with interviews and focus groups to capture and reflect on the process of engaging with South Asian patients about end of life care. Researchers and kidney care clinicians on four NHS sites in the UK recruited South Asian patients with ESKF who were requiring end of life care to take part in individual interviews; and other clinicians who provided care to South Asian kidney patients at end of life to take part in focus groups exploring end of life care issues. In action research planning, action and evaluation are interlinked and data were analysed with emergent themes fed back to care providers through the research cycle. Reflections on the process of patient recruitment generated focus group discussions about access which were analysed thematically and reported here.ResultsSixteen patients were recruited to interview and 45 different care providers took part in 14 focus groups across the sites. The process of recruiting patients to interview and subsequent focus group data highlighted some of the key issues concerning access to end of life care. These were: the identification of patients approaching end of life; and their awareness of end of life care; language barriers and informal carers’ roles in mediating communication; and contrasting cultures in end of life kidney care.ConclusionsReflection on the process of recruitment in this action research study provided insight into the complex scenario of end of life in kidney care. Some of the emerging issues such as the difficulty identifying patients are likely to be common across all patient groups, whilst others concerning language barriers and third party communication are more specific to ethnic minorities. A focus on South Asian ethnicity contributes to better understanding of patient perspectives and generic concepts as well as access to end of life kidney care for this group of patients in the UK. Action research was a useful methodology for achieving this and for informing future research to include informal carers and other ethnic groups.

The Prevalence of Visual Impairment in People with Dementia (the PrOVIDe study): a cross-sectional study of people aged 60–89 years with dementia and qualitative exploration of individual, carer and professional perspectives

BackgroundThe prevalence of visual impairment (VI) and dementia increases with age and these conditions may coexist, but few UK data exist on VI among people with dementia.ObjectivesTo measure the prevalence of eye conditions causing VI in people with dementia and to identify/describe reasons for underdetection or inappropriate management.DesignStage 1 – cross-sectional prevalence study. Stage 2 – qualitative research exploring participant, carer and professional perspectives of eye care.SettingStage 1 – 20 NHS sites in six English regions. Stage 2 – six English regions.ParticipantsStage 1 – 708 participants with dementia (aged 60–89 years): 389 lived in the community (group 1) and 319 lived in care homes (group 2). Stage 2 – 119 participants.InterventionsStage 1 gathered eye examination data following domiciliary sight tests complying with General Ophthalmic Services requirements and professional guidelines. Cognitive impairment was assessed using the Standardised Mini-Mental State Examination (sMMSE) test, and functional ability and behaviour were assessed using the Bristol Activities of Daily Living Scale and Cambridge Behavioural Inventory – Revised. Stage 2 involved individual interviews (36 people with dementia and 11 care workers); and separate focus groups (34 optometrists; 38 family and professional carers).Main outcome measures.VI defined by visual acuity (VA) worse than 6/12 or worse than 6/18 measured before and after refraction.ResultsStage 1 – when participants wore their current spectacles, VI prevalence was 32.5% [95% confidence interval (CI) 28.7% to 36.5%] and 16.3% (95% CI 13.5% to 19.6%) for commonly used criteria for VI of VA worse than 6/12 and 6/18, respectively. Of those with VI, 44% (VA < 6/12) and 47% (VA < 6/18) were correctable with new spectacles. Almost 50% of remaining uncorrectable VI (VA < 6/12) was associated with cataract, and was, therefore, potentially remediable, and one-third was associated with macular degeneration. Uncorrected/undercorrected VI prevalence (VA < 6/12) was significantly higher in participants in care homes (odds ratio 2.19, 95% CI 1.30 to 3.73;p < 0.01) when adjusted for age, sex and sMMSE score. VA could not be measured in 2.6% of group 1 and 34.2% of group 2 participants (p < 0.01). The main eye examination elements (excluding visual fields) could be performed in > 80% of participants. There was no evidence that the management of VI in people with dementia differed from that in older people in general. Exploratory analysis suggested significant deficits in some vision-related aspects of function and behaviour in participants with VI. Stage 2 key messages – carers and care workers underestimated how much can be achieved in an eye examination. People with dementia and carers were unaware of domiciliary sight test availability. Improved communication is needed between optometrists and carers; optometrists should be informed of the person’s dementia. Tailoring eye examinations to individual needs includes allowing extra time. Optometrists wanted training and guidance about dementia. Correcting VI may improve the quality of life of people with dementia but should be weighed against the risks and burdens of undergoing examinations and cataract surgery on an individual basis.LimitationsSampling bias is possible owing to quota-sampling and response bias.ConclusionsThe prevalence of VI is disproportionately higher in people with dementia living in care homes. Almost 50% of presenting VI is correctable with spectacles, and more with cataract surgery. Areas for future research are the development of an eye-care pathway for people with dementia; assessment of the benefits of early cataract surgery; and research into the feasibility of specialist optometrists for older people.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Streamlining R&D permission for substantial amendments to oncology clinical trials at an NHS site: a case study

Methods Observation and mapping of Trust wide processes to identify shortfalls and barriers to timely approval. Evident that capacity within service support departments, R&D and local research teams was limited when dealing with amendments from all areas of research. Cases were identified in which not all parties were aware of amendments. It was decided to divide the SOP guided facilitation of service support department sign off (pharmacy, radiology, costing, contracts etc.) between the relevant research units, building capacity for timely reviews and approvals.

Remote training solutions for complex intervention trials

Background Delivering training to participating sites is an essential part of successful trial setup especially when new techniques, treatments or technologies are involved. RAIDER is a multicentre (> 30 NHS Trusts) phase II trial of complex radiotherapy for muscle invasive bladder cancer. The radiotherapy techniques were developed at a single UK NHS site and in addition to written materials ideally require demonstration using the relevant radiotherapy planning and imaging software, only available at the experienced site. Rather than arranging a series of visits from key participating site personnel (Principal Investigator (PI) and research radiographers), a virtual meeting plan was developed.

Evidence-based intervention for preschool children with primary speech and language impairments: Child Talk – an exploratory mixed-methods study

BackgroundThe Child Talk study aimed to develop an evidence-based framework to support the decision-making of speech and language therapists (SLTs) as they design and plan interventions appropriate to the needs of individual children with primary speech and language impairments and their families. The need for early identification and effective intervention for these children continues to be a government policy priority because of the link between children’s early speech and language skills and their broader well-being and outcomes in later life. The first phase of Child Talk sought to map and describe current SLT practice for these children; identify and summarise the existing research evidence relating to practice; and investigate the perspectives of parents, early years practitioners, preschool children and ‘underserved’ communities on speech and language therapy. The second phase of Child Talk focused on the development of a toolkit – assessment tools, outcome measures and a data set – to support future service and economic evaluations of the framework.MethodsChild Talk adopted a mixed-methods design. Quantitative methods included surveys and investigated the prevalence and patterns of intervention usage; qualitative data collection methods included focus groups, interviews and reflection to investigate participants’ perspectives and understandings of interventions. Data analysis methods included descriptive and inferential statistics, thematic and content analysis and framework analysis. Participants were recruited nationally through six NHS sites, professional bodies, parent groups and advertising. Participants included SLTs (n = 677), parents (n = 84), preschool children (n = 24), early years practitioners (n = 31) and ‘underserved’ communities (n = 52).Key findingsSpeech and language therapy interventions were characterised in terms of nine themes, viewed as comprehensive and inclusive by practitioners. Relevant assessments, interventions and outcome domains were identified for the nine themes. Areas of tacit knowledge and underspecified processes contributed to variability in the detail of the framework. Systematic reviews identified 58 relevant and robust studies (from 55,271 papers retrieved from the initial literature search). The number of studies relevant to each theme varied from 1 to 33. Observational data on preschool children’s perspectives on speech and language therapy interventions revealed the dynamic nature of their interaction with different activities and people within therapy sessions. Parents’ experiences of speech and language therapy were generally positive although some reported that the rationale for therapy was not always clear. Parental perspectives in underserved communities suggested that, although parents were confident about how to support children’s language development, they were less informed about the nature of language impairments and the function of speech and language therapy. The availability of information regarding resources directed towards speech and language therapy services was poor. In particular, services lacked both a culture of collecting outcome data routinely and measures of professional input and costs associated with their activities.ConclusionA descriptive framework of SLT practice has been developed to support the discussions between therapists and families when making decisions regarding the selection of interventions and outcome measures. Further research is needed to address gaps in the intervention framework and evaluate its effectiveness and cost-effectiveness in improving outcomes for preschool children with primary speech and language impairments.Study registrationThis study is registered as PROSPERO CRD42013006369.FundingThe National Institute for Health Research Programme Grants for Applied Research programme.

Systematic analysis of funding awarded to institutions in the United Kingdom for infectious disease research, 1997-2010.

SummaryObjectivesThis study aimed to assess the research investments made to UK institutions for all infectious disease research and identify the direction of spend by institution.DesignSystematic analysis. Databases and websites were systematically searched for information on relevant studies funded for the period 1997–2010.SettingUK institutions carrying out infectious disease research.ParticipantsNone.Main outcome measuresTwenty academic institutions receiving greatest sum investments across infection are included here, also NHS sites, Sanger Institute, Health Protection Agency and the Medical Research Council. We measured total funding, median award size, disease areas and position of research along the R&D value chain.ResultsIncluded institutions accounted for £2.1 billion across 5003 studies. Imperial College and University of Oxford received the most investment. Imperial College led the most studies. The Liverpool and London Schools of Tropical Medicine had highest median award size, whereas the NHS sites combined had many smaller studies. Sum NHS funding appears to be declining over time, whilst university income is relatively stable. Several institutions concentrate almost exclusively on pre-clinical research. In some areas, there is clearly a leading institution, e.g. Aberdeen and mycology research or UCL and antimicrobial resistance.ConclusionUK institutions carry out research across a wide range of infectious disease areas. This analysis can identify centres of excellence and help inform future resource allocation for research priorities. Institutions can use this analysis for establishing expertise within their groups, identifying external collaborators and informing local research strategy.

Routine coagulation screening is an unnecessary step prior to ERCP in patients without biochemical evidence of jaundice: a cross-centre study

Introduction: Guidelines suggest that all patients with choledocholithiasis should have a coagulation screen prior to endoscopic retrograde cholangiopancreatography (ERCP). This study aims to establish the incidence of deranged coagulation in such patients and its relationship with bleeding complications. Methods: Analysis of consecutive patients undergoing ERCP procedures at two NHS sites was undertaken. Exclusion criteria were anti-coagulation use, bleeding disorders or incomplete data. Demographic data, pre-procedure bilirubin and prothrombin time (PT), ERCP procedural information, and bleeding complications were recorded for each. The cohort was divided into jaundice and non-jaundiced groups. Statistical analysis was performed using the student's t-test, Chi-squared test and Fisher's exact test. Results: 793 patients (419 jaundiced; 374 non-jaundiced) were included. PT was significantly higher in the jaundiced group (greater by 2 (1.35–2.64) seconds; p < 0.001). PT was prolonged in 26.7 per cent of the jaundiced group; 28 patients (6.7 per cent) had a PT of >16.8 s 5.9 per cent of the non-jaundiced group had prolonged PT, with 1 patient having a PT >16.8 s. There were 5 major, and 32 minor bleeding complications with no differences between groups. In those with abnormal coagulation, only 1 minor bleeding complication occurred in a jaundiced patient. Discussion: Normal pre-ERCP bilirubin was 99.7% (98.5–100) sensitive to predict a PT <16.8 s. Cost savings of £14,350 could have been achieved with judicial use of coagulation screening. Conclusion: Pre-ERCP coagulation screening should only be indicated in patients with a raised bilirubin or individuals on anticoagulation therapy or with a history of bleeding diathesis.

Pressure ulcer related pain in community populations: a prevalence survey.

BackgroundPressure ulcers are costly to the healthcare provider and can have a major impact on patient’s quality of life. One of the most distressing symptoms reported is pain. There is very little published data on the prevalence and details of pain experienced by patients with pressure ulcers, particularly in community populations. The study was conducted in two community NHS sites in the North of England.MethodsThe aim was to estimate the prevalence of pressure area related pain within a community population. We also explored the type and severity of the pain and its association with pressure ulcer classification. A cross-sectional survey was performed of community nurses caseloads to identify adult patients with pressure ulcers and associated pain. Consenting patients then had a full pain assessment and verification of pressure ulcer grade.ResultsA total of 287 patients were identified with pressure ulcers (0.51 per 1000 adult population). Of the 176 patients who were asked, 133 (75.6%) reported pain. 37 patients consented to a detailed pain assessment. Painful pressure ulcers of all grades and on nearly all body sites were identified. Pain intensity was not related to number or severity of pressure ulcer. Both inflammatory and neuropathic pain were reported at all body sites however the proportion of neuropathic pain was greater in pressure ulcers on lower limbs.ConclusionsThis study has identified the extent and type of pain suffered by community patients with pressure ulcers and indicates the need for systematic and regular pain assessment and treatment.

Oxford NOTECHS II: A Modified Theatre Team Non-Technical Skills Scoring System

BackgroundWe previously developed and validated the Oxford NOTECHS rating system for evaluating the non-technical skills of an entire operating theatre team. Experience with the scale identified the need for greater discrimination between levels of performance within the normal range. We report here the development of a modified scale (Oxford NOTECHS II) to facilitate this. The new measure uses an eight-point instead of a four point scale to measure each dimension of non-technical skills, and begins with a default rating of 6 for each element. We evaluated this new scale in 297 operations at five NHS sites in four surgical specialities. Measures of theatre process reliability (glitch count) and compliance with the WHO surgical safety checklist were scored contemporaneously, and relationships with NOTECHS II scores explored.ResultsMean team Oxford NOTECHS II scores was 73.39 (range 37–92). The means for surgical, anaesthetic and nursing sub-teams were 24.61 (IQR 23, 27); 24.22 (IQR 23, 26) and 24.55 (IQR 23, 26). Oxford NOTECHS II showed good inter-rater reliability between human factors and clinical observers in each of the four domains. Teams with high WHO compliance had higher mean Oxford NOTECHS II scores (74.5) than those with low compliance (71.1) (p = 0.010). We observed only a weak correlation between Oxford NOTECHS II scores and glitch count; r = −0.26 (95% CI −0.36 to −0.15). Oxford NOTECHS II scores did not vary significantly between 5 different hospital sites, but a significant difference was seen between specialities (p = 0.001).ConclusionsOxford NOTECHS II provides good discrimination between teams while retaining reliability and correlation with other measures of teamwork performance, and is not confounded by technical performance. It is therefore suitable for combined use with a technical performance scale to provide a global description of operating theatre team performance.

Barriers to successful implementation of care in home haemodialysis (BASIC-HHD):1. Study design, methods and rationale

BackgroundTen years on from the National Institute of Health and Clinical Excellence’ technology appraisal guideline on haemodialysis in 2002; the clinical community is yet to rise to the challenge of providing home haemodialysis (HHD) to 10-15% of the dialysis cohort. The renal registry report, suggests underutilization of a treatment type that has had a lot of research interest and several publications worldwide on its apparent benefit for both physical and mental health of patients. An understanding of the drivers to introducing and sustaining the modality, from organizational, economic, clinical and patient perspectives is fundamental to realizing the full benefits of the therapy with the potential to provide evidence base for effective care models. Through the BASIC-HHD study, we seek to understand the clinical, patient and carer related psychosocial, economic and organisational determinants of successful uptake and maintenance of home haemodialysis and thereby, engage all major stakeholders in the process.Design and methodsWe have adopted an integrated mixed methodology (convergent, parallel design) for this study. The study arms include a. patient; b. organization; c. carer and d. economic evaluation. The three patient study cohorts (n = 500) include pre-dialysis patients (200), hospital haemodialysis (200) and home haemodialysis patients (100) from geographically distinct NHS sites, across the country and with variable prevalence of home haemodialysis. The pre-dialysis patients will also be prospectively followed up for a period of 12 months from study entry to understand their journey to renal replacement therapy and subsequently, before and after studies will be carried out for a select few who do commence dialysis in the study period. The process will entail quantitative methods and ethnographic interviews of all groups in the study. Data collection will involve clinical and biomarkers, psychosocial quantitative assessments and neuropsychometric tests in patients. Organizational attitudes and dialysis unit practices will be studied together with perceptions of healthcare providers on provision of home HD. Economic evaluation of home and hospital haemodialysis practices will also be undertaken and we will apply scenario ("what … if") analysis using system dynamics modeling to investigate the impact of different policy choices and financial models on dialysis technology adoption, care pathways and costs. Less attention is often given to the patient’s carers who provide informal support, often of a complex nature to patients afflicted by chronic ailments such as end stage kidney disease. Engaging the carers is fundamental to realizing the full benefits of a complex, home-based intervention and a qualitative study of the carers will be undertaken to elicit their fears, concerns and perception of home HD before and after patient’s commencement of the treatment. The data sets will be analysed independently and the findings will be mixed at the stage of interpretation to form a coherent message that will be informing practice in the future.DiscussionThe BASIC-HHD study is designed to assemble pivotal information on dialysis modality choice and uptake, investigating users, care-givers and care delivery processes and study their variation in a multi-layered analytical approach within a single health care system. The study results would define modality specific service and patient pathway redesign.Study RegistrationThis study has been reviewed and approved by the Greater Manchester West Health Research Authority National Research Ethics Service (NRES) The study is on the NIHR (CLRN) portfolio.

Exploring the midwife's role in health promotion practice

Despite an increasing policy focus in the UK on midwives' role in health promotion, there is a paucity of research in this area. This article aims to address this by exploring midwives' opinions and working practice on health promotion through semi-structured interviews with 15 midwives across 3 NHS sites within Northwest England. Transcribed data were analyzed following the interpretivist tradition and adhered to grounded theory principles. Themes that were identified include delivery of health promotion and barriers to health promotion. While midwives acknowledged the importance of their role in improving health, practice was predominantly ‘health education’. Barriers to delivering health promotion included concerns about the midwife-client relationship and inadequate training. The authors recommend midwifery services re-evaluate current post-registration health promotion training programmes and focus on skills such as motivational interviewing.

Why do clinicians not refer patients to online decision support tools? Interviews with front line clinics in the NHS

ObjectiveTo assess whether clinical teams would direct patients to use web-based patient decision support interventions (DESIs) and whether patients would use them.DesignRetrospective semistructured interviews and web server log analysis.Participants and...

Staff at private contract hospitals angry over parking fee anomaly

Nurses at three hospitals in Scotland face having to continue paying car parking charges, despite the government’s decision to scrap the fees at NHS sites across the country.

Changes in practice and organisation surrounding blood transfusion in NHS trusts in England 1995–2005

Background:Between 1996 and 2005 in the UK, the Serious Hazards of Transfusion (SHOT) scheme has reported 105 deaths and 296 patients developing major morbidity due to transfusion. Accurate patient identification...

Achieving a smoke-free hospital: reported enforcement of smoke-free regulations by NHS health care staff

In December 2006, all UK NHS trusts introduced smoke-free regulations prohibiting smoking on all NHS sites. These rules are to be enforced by all NHS trust staff. We have investigated the implementation of these regulations by health care workers when they encounter smokers on a NHS hospital site. Eighty-five medical and nursing staff working in acute medicine at the Queen Elizabeth Hospital, Gateshead, completed a questionnaire reporting their behavior when exposed to smokers on NHS hospital sites. Over 50% of medical and nursing staff reported that they would not challenge patients, staff or visitors smoking on NHS trust site. There was a trend for employees to be more likely to challenge patients than visitors, and to be more likely to challenge visitors than other staff. Fear of aggression was the most commonly reported reason for not challenging smokers. Most medical and nursing staff report that they do not enforce NHS smoke-free regulations and do not challenge smokers on NHS sites. This is due to many real and perceived barriers including fear of aggression. Overcoming these barriers is an important area of research to guide successful implementation of future smoking policy. There may be scope for improvement through training in NHS policy and in non-confrontational communication skills.

Funding NHS support for teaching: A spanner in the internal market?

Classroom teaching of medical undergraduates is supported by a range of activities which take place on NHS sites. The teaching hospitals that host these activities receive a subsidy to compensate for the burden placed on their resources. In addition, there is an informal trading of time between NHS‐employed and university‐employed staff. The imprecision of these two mechanisms will affect the costs incurred by teaching hospitals, and, therefore, the prices they charge for their services—this has implications for their position as competitors in the NHS internal market.