Pelvic vein incompetence and chronic pelvic pain: a case-control study.

OBJECTIVE: To investigate the association between chronic pelvic pain (CPP) and pelvic vein incompetence (PVI) or pelvic varices. DESIGN: Case-control study. SETTING: Gynaecology and vascular surgery services in two teaching hospitals in north-west England. SAMPLE: A total of 328 premenopausal women (aged 18-54 years), comprising 164 women with CPP and 164 matched controls with no history of CPP. METHODS: Symptom and quality-of-life questionnaires and transvaginal duplex ultrasound for PVI and pelvic varices. MAIN OUTCOME MEASURES: Venous reflux of >0.7 s in the ovarian or internal iliac veins (primary outcome) and presence of pelvic varices (secondary outcome). Statistical analysis compared the prevalence of PVI between women with and without CPP using the two-sided chi-square test. Logistic regression was used to compare the odds of having PVI and pelvic varices between women with and without CPP. RESULTS: Pelvic vein incompetence was found on transvaginal duplex ultrasound in 101/162 (62%) women with CPP, compared with 30/164 (19%) asymptomatic controls (OR 6.79, 95% CI 4.11-11.47, p < 0.001). Forty-three of 164 (27%) women with CPP had pelvic varices compared with three of 164 (2%) asymptomatic women (OR 18.9, 95% CI 5.73-62.7, p < 0.001). CONCLUSIONS: There was a significant association between PVI, as detected by transvaginal duplex imaging, and CPP. Pelvic varices were strongly associated with CPP and were infrequently seen in control patients. These results justify further evaluation of PVI and its treatment in well-designed research.

Transvenous occlusion of incompetent pelvic veins to treat chronic pelvic pain in women: A randomised controlled trial.

OBJECTIVE: To investigate the effectiveness of transvenous occlusion of incompetent pelvic veins in women presenting with chronic pelvic pain (CPP) in improving symptoms and quality of life. DESIGN: Patient-blinded randomised controlled trial with objective outcome measures. Results were analysed on an intention-to-treat basis. SETTING: Gynaecology and Vascular Surgery Services of two teaching hospitals in northwest England. POPULATION: Sixty women aged 18-54 years presenting with CPP after exclusion of other pathology, and who were found to have pelvic vein incompetence. METHODS: Participants were randomised and assigned to contrast venography alone or contrast venography plus transvenous occlusion of the incompetent pelvic veins. MAIN OUTCOME MEASURE: The primary outcome was change in pain score measured using the short-form McGill Pain Score (SF-MPQ) and the Visual Analogue Score (VAS) recorded at 12 months post-randomisation. Secondary outcomes included quality of life using the EQ-5D instrument, symptomatic improvement and procedure-related complications. RESULTS: Sixty participants were randomised to transvenous occlusion of incompetent pelvic veins or venography only. At 12 months, median pain scored 2 (3-10) in the intervention group versus 9 (5-22) in controls (p = 0.016). Pain on the VAS scored 15 (0-3) versus 53 (20-71), respectively (p = 0.002). Median EQ-5D improved after intervention from 0.79 (0.74-0.84) to 0.84 (0.79-1.00; p = 0.008) over 12 months. No major complications were reported. CONCLUSION: Transvenous occlusion of pelvic vein incompetence reduced pain scores, improved quality of life and diminished symptom burden with no major reported complications. TRIAL REGISTRATION: ISRCTN 15091500.

"Body as a Machine": How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences.

Research exploring illness experiences of young people with sickle cell disease (SCD) has, to date, ignored fatigue, despite the distinctive anemic nature of SCD. To examine adolescents with SCD fatigue experiences, we conducted narrative and picture-elicitation interviews with 24 adolescents in Ghana. A grounded theory, "body as a machine," was constructed from the narratives. Fatigue represented the most restrictive and disruptive aspect of growing up with SCD. Its meaning and significance laid in what it symbolized. Fatigue represented a socially undesirable feature that was stigmatizing, due to the expectations of high physicality in adolescence. Fatigue was therefore a major threat to "normalcy." The social significance of the physical body and its capacities shaped the adolescents' fatigue experiences. Managing fatigue to construct/maintain socially acceptable identities dominated the adolescents' lives. Consequently, there is a need for a recognition of the significance of fatigue to adequately support young people growing up with SCD.

Introducing a model for emotional distress in respiratory disease: A systematic review and synthesis of symptom management models.

AIM: To undertake a theoretical systematic review to develop a conceptual model of illness-related emotional distress in the context of symptom management in chronic respiratory disease. DESIGN: We performed a systematic search to identify conceptual models. DATA SOURCES: Electronic databases MEDLINE, CINAHL, EMBASE and PsycINFO were searched and papers included from inception of the search term until June 2017. REVIEW METHODS: The review was conducted following Pound and Campbell's and Turner's theory synthesis. Conceptual models were appraised using Kaplan's criteria. Models were excluded if they referred to a specific condition and/or lacked clarity. RESULTS: This synthesis, which includes five models and additional evidence, yielded a new conceptual model describing the processes of regulation and symptom self-management in chronic respiratory disease. Identified sources of illness-related emotional distress are new or increased symptoms, additional treatment, new restrictions in performance of daily life roles and increased unpredictability. People goals and self-efficacy were identified as further drivers of symptom self-management. The regulation process is embedded in contextual factors. CONCLUSION: Theory synthesis provided transparent guidance in developing a model to understand of the factors driving self-management decisions. Therefore, the model has the potential to guide development of interventions that support symptom self-management in chronic respiratory disease. IMPACT: This newly presented conceptual model of illness-related emotional distress provides an understanding of the factors that drive self-management decisions when peoples experience new or increased symptoms. Such understanding is critical for nursing practice to developing appropriate interventions, especially in support of people decision-making.

"Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study.

AIM AND OBJECTIVES: To explore the experience of pulmonary exacerbation from the perspective of adults with cystic fibrosis. BACKGROUND: While management of pulmonary exacerbations is a pillar of cystic fibrosis care, little is known of patients' perspectives. Understanding the patient's experience is essential for developing and evaluating interventions in support of patient self-management. DESIGN: Qualitative study with longitudinal study in a subsample. METHODS: The study took place from 2015-2016 in a university hospital. Eighteen patients with cystic fibrosis were included who were ≥18 years of age and had no solid organ transplant. Patients' experiences were explored through semistructured interviews and analysed using framework analysis. They each participated in one interview, with a subsample (N = 7) being interviewed twice during and once after antibiotic therapy. RESULTS: Patients (11 men and 7 women; median age 29.5 years, range 19-55 years; median FEV1 45%, range FEV1 23%-105%) experienced pulmonary exacerbations as disruptions of their normality, which led to a substantial increase in their emotional distress. Exacerbations represented a period of threat and domination by CF; that is, symptoms and treatment consumed energy, restricted physical activity and daily life roles. "Noting change," "waiting until antibiotics help," "returning to normality" and "establishing a new normality" characterised their descriptions of the pulmonary exacerbation trajectory. Emotional distress was the major driver for patients' self-management, and personal goals and illness beliefs influenced also patients' self-management decisions. CONCLUSION: The experienced degree and source of emotional distress are drivers for self-management decisions in patients with cystic fibrosis who experience a pulmonary exacerbation. RELEVANCE TO CLINICAL PRACTICE: Our data provide new understanding that will be essential to informing clinical practice, future patient-reported outcomes measures and intervention development.

Study Comparing Vein Integrity and Clinical Outcomes in Open Vein Harvesting and 2 Types of Endoscopic Vein Harvesting for Coronary Artery Bypass Grafting: The VICO Randomized Clinical Trial (Vein Integrity and Clinical Outcomes).

BACKGROUND: Current consensus statements maintain that endoscopic vein harvesting (EVH) should be standard care in coronary artery bypass graft surgery, but vein quality and clinical outcomes have been questioned. The VICO trial (Vein Integrity and Clinical Outcomes) was designed to assess the impact of different vein harvesting methods on vessel damage and whether this contributes to clinical outcomes after coronary artery bypass grafting. METHODS: In this single-center, randomized clinical trial, patients undergoing coronary artery bypass grafting with an internal mammary artery and with 1 to 4 vein grafts were recruited. All veins were harvested by a single experienced practitioner. We randomly allocated 300 patients into closed tunnel CO2 EVH (n=100), open tunnel CO2 EVH (n=100), and traditional open vein harvesting (n=100) groups. The primary end point was endothelial integrity and muscular damage of the harvested vein. Secondary end points included clinical outcomes (major adverse cardiac events), use of healthcare resources, and impact on health status (quality-adjusted life-years). RESULTS: The open vein harvesting group demonstrated marginally better endothelial integrity in random samples (85% versus 88% versus 93% for closed tunnel EVH, open tunnel EVH, and open vein harvesting; P<0.001). Closed tunnel EVH displayed the lowest longitudinal hypertrophy (1% versus 13.5% versus 3%; P=0.001). However, no differences in endothelial stretching were observed between groups (37% versus 37% versus 31%; P=0.62). Secondary clinical outcomes demonstrated no significant differences in composite major adverse cardiac event scores at each time point up to 48 months. The quality-adjusted life-year gain per patient was 0.11 (P<0.001) for closed tunnel EVH and 0.07 (P=0.003) for open tunnel EVH compared with open vein harvesting. The likelihood of being cost-effective, at a predefined threshold of £20 000 per quality-adjusted life-year gained, was 75% for closed tunnel EVH, 19% for open tunnel EVH, and 6% for open vein harvesting. CONCLUSIONS: Our study demonstrates that harvesting techniques affect the integrity of different vein layers, albeit only slightly. Secondary outcomes suggest that histological findings do not directly contribute to major adverse cardiac event outcomes. Gains in health status were observed, and cost-effectiveness was better with closed tunnel EVH. High-level experience with endoscopic harvesting performed by a dedicated specialist practitioner gives optimal results comparable to those of open vein harvesting. CLINICAL TRIAL REGISTRATION: URL: https://www.isrctn.com. International Standard Randomised Controlled Trial Registry Number: 91485426.

Perspectives of patients and healthcare professionals on mHealth for asthma self-management.

Mobile healthcare (mHealth) has the potential to revolutionise the self-management of long-term medical conditions such as asthma. A user-centred design is integral if mHealth is to be embraced by patients and healthcare professionals.The aim of this study was to determine the perspectives of individuals with asthma and healthcare professionals on the use of mHealth for asthma self-management.We used a sequential exploratory mixed methods design; focus groups informed the development of questionnaires, which were disseminated to individuals with asthma and healthcare professionals.Focus group participants (18 asthma patients and five healthcare professionals) identified 12 potential uses of mHealth. Questionnaire results showed that individuals with asthma (n=186) most frequently requested an mHealth system to monitor asthma over time (72%) and to collect data to present to healthcare teams (70%). In contrast, healthcare professionals (n=63) most frequently selected a system alerting patients to deteriorating asthma control (86%) and advising them when to seek medical attention (87%). Individuals with asthma were less likely than healthcare professionals (p<0.001) to believe that assessing medication adherence and inhaler technique could improve asthma control.Our data provide strong support for mHealth for asthma self-management, but highlight fundamental differences between the perspectives of patients and healthcare professionals.

Principles for discharging patients from acute care: a scoping review of policy.

BACKGROUND: Acute medicine units (AMUs) are part of acute hospital care, where length of patient stay is short and turnover is high. Expediting patient discharge safely is a major function of AMUs, which need up-to-date bespoke guidance. AIM: To carry out a scoping review of UK discharge policy to critically consider, compare and contrast the relevant discharge policies and guidance that underpin the assessment of acute patient discharge. OBJECTIVES: To inform the production of bespoke patient discharge guidance for AMUs. Design and stages: Identify the review questions; identify relevant studies; select the studies; chart the data; collate, summarise and report the results. FINDINGS: 28 patient discharge policy guidelines were identified that had no specific guidance for patient discharge from AMUs. New bespoke principles for AMUs were created through a pragmatic interpretation of current relevant policies. CONCLUSION: There is a gap in specific patient discharge guidance for AMUs. New guidance should contribute in practice to improve patient discharge.

Interventions for cough in cancer.

BACKGROUND: This is an updated version of the original Cochrane review first published in Issue 9, 2010 on "Interventions for cough in cancer". Cough is a common symptom in patients with malignancies, especially in patients with lung cancer. Cough is not well controlled in clinical practice and clinicians have few management options to treat it. OBJECTIVES: The primary objective was to determine the effectiveness of interventions, both pharmacological and non-pharmacological, (other than chemotherapy and external beam radiotherapy) in the management of cough in malignant disease (especially in lung cancer). SEARCH METHODS: For this update, we searched for relevant studies in CENTRAL and DARE (The Cochrane Library); MEDLINE; EMBASE; PsycINFO; AMED and CINAHL to 9 June 2014. In addition, we searched for ongoing trials via the metaRegister of controlled trials (mRCT), ClinicalTrials.gov, the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) and the UK Clinical Research Network Study Portfolio. SELECTION CRITERIA: We selected randomised controlled trials (RCTs) and clinical trials (quasi-experimental trials and trials where there is a comparison group but no mention of randomisation) in participants with primary or metastatic lung cancer or other cancers. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed the titles and abstracts of all studies for inclusion, and extracted data from all included studies independently before reaching consensus. A third review author arbitrated on any disagreement. Meta-analysis was not attempted due to the heterogeneity of the studies. MAIN RESULTS: For the original version of the review, 17 studies met the inclusion criteria and examined either brachytherapy, laser or photodynamic therapy (eight studies) or a variety of pharmacological therapies (nine studies). Overall, there was an absence of credible evidence and the majority of studies were of low methodological quality and at high risk of bias. Brachytherapy in a variety of doses seemed to improve cough in selected participants, suggesting that possibly the lowest effective dose should be used to minimise side effects. Photodynamic therapy was examined in one study and, while improvements in cough were observed, its role in relationship to other therapies for cough was unclear. Some indication of positive effect was observed with morphine, codeine, dihydrocodeine, levodropropizine, sodium cromoglycate and butamirate citrate linctus (cough syrup), although all studies had significant risk of bias. For this update, we did not identify any additional trials for inclusion. Two ongoing trials were identified but no study results were available. AUTHORS' CONCLUSIONS: No new trials were included since the publication of the original version of this review, while 11 new studies that were identified were eventually excluded from this review. Therefore, our conclusions remain unchanged. No practice recommendations could be drawn from this review. There is an urgent need to increase the number and quality of studies evaluating the effects of interventions for the management of cough in cancer.

Referral and management options for patients with chronic kidney disease: perspectives of patients, generalists and specialists.

BACKGROUND: Chronic Kidney Disease (CKD) is increasing in prevalence and significance as a global public health issue. Appropriate management of CKD stages 3-4 in either generalist or specialist care is essential in order to slow disease progression. As various consulting options between services may be used, it is important to understand how patients and practitioners view these options. OBJECTIVE: To elicit patient and practitioner views and preferences on the acceptability and appropriateness of referral practices and consulting options for CKD stage 3-4. DESIGN: A mixed methods approach involving a semi-structured interview and structured rating exercise administered by telephone. SETTING & PARTICIPANTS: Adult (18+) patients with CKD stage 3-4 were recruited via their General Practitioner (GP). Practitioners were recruited from both general and specialist services. RESULTS: Sixteen patients and twenty-two practitioners participated in the study between July and September, 2011. Both patients and practitioners preferred 'GP with access to a specialist' and least preferred 'Specialist Review'. Computer review and telephone review were acceptable to participants under certain conditions. Practitioners favoured generalist management of patients with CKD 3. Specialists recommended active discharge of patients with stabilised stage 4 back to generalist care. Both generalists and specialists strongly supported sharing patients' medical records via electronic consultation systems. CONCLUSION: Participants tended to prefer the current model of CKD management. Suggested improvements included; increasing the involvement of patients in referral and discharge decisions; improving the adequacy of information given to specialists on referral and encouraging further use of clinical guidelines in practice.

Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis.

AIMS: To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis. BACKGROUND: Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2-4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease. DESIGN: A Qualitative study which took place between 2007-2012. METHODS: Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis. FINDINGS: Three main themes were identified: 'Struggling to get a diagnosis'; 'Loss of the life I previously had'; and 'Living with Idiopathic Pulmonary Fibrosis'. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures. CONCLUSIONS: There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.

Exploring the Impact of Bereavement During the COVID-19 Pandemic on Children and Young People: A Scoping Review.

Experiencing bereavement as a child or young person (CYP) can have long-lasting effects. The societal and environmental burdens of the SARS-CoV-2 pandemic exacerbated the experience of loss and grief for many CYP, who were unable to access their usual the support networks. However, it is still unclear what is currently known and not known about the experiences of CYP bereaved during the SARS-CoV-2 pandemic. This review used the framework of Arksey and O'Malley and included five stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results. The methodological quality of the included studies was also assessed using the Critical Appraisal Skills Programme tool. The PRISMA framework was used for reporting the results. The electronic databases Medline, PsychINFO, CINAHL, and PubMed were searched for relevant articles. A total of three papers meeting the inclusion criteria were included in this review and two main themes identified: (1) support (which included sub-themes; social isolation and the impact on support; support from family and friends; wider support networks); (2) Emotional impact of bereavement during a pandemic. Access to support networks is crucial for CYP to understand and process their emotions relating to their bereavement experience. The pandemic meant that many usual support networks such as family and friends were inaccessible to CYP, who struggled to deal with their experience of grief during this time. Schools are a valuable support mechanism and can help CYP understand their emotions through open discussions about their bereavement. The limited empirical evidence currently available in this area of research demonstrates an important need to further understanding of the long-term impacts of dealing with pandemic-related loss in childhood.

Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: a qualitative study.

BACKGROUND: Palliative care for people with life-limiting non-malignant disease is increasingly prioritised. People with end-stage chronic obstructive pulmonary disease are among a key group of non-cancer patients likely to benefit from specialist palliative care, but it remains uncertain whether the needs of this group are met by existing services. AIM: To evaluate the experiences of patients with chronic obstructive pulmonary disease who accessed specialist palliative care. DESIGN: Data from semi-structured interviews were analysed using a hermeneutic phenomenological approach. SETTING/PARTICIPANTS: Eight patients accessing specialist palliative care within one city in North West England. RESULTS: Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical and psychological symptoms, reduced social isolation and a broadened physical environment. Participants were mainly aware of their poor prognosis, but discussion of referral to palliative care sometimes caused distress owing to the historical associations between dying and hospice care. Following engagement with services, participants' perceptions changed: palliative care was associated with social inclusion and opportunities to engage in reciprocal and altruistic social action. Negative associations were replaced by uncertainty and anxiety about the prospect of discharge. CONCLUSIONS: Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access.

Considerations in developing and delivering a non-pharmacological intervention for symptom management in lung cancer: the views of health care professionals.

BACKGROUND: A respiratory distress symptom cluster has recently been identified in lung cancer associated with breathlessness, cough and fatigue, and the study reported here is part of a wider body of work being undertaken to develop a novel non-pharmacological intervention (NPI) for the management of this symptom cluster. The current paper reports the views of health care professionals (HCPs) involved with cancer care regarding the most appropriate ways of developing and delivering such a novel intervention. METHODS: Five focus groups, supplemented with additional telephone interviews, were conducted with a range of both community- and acute-based HCPs involved in symptom management for lung cancer patients. Participants included oncologists, palliative care consultants, specialist nurses, occupational therapists and physiotherapists. The focus groups were transcribed verbatim and analysed using NVIVO to support a framework analysis approach. RESULTS: The current delivery of NPIs was found to be ad hoc and varied between sites both in terms of what was delivered and by which health care professionals. The provision of NPIs within acute medical settings faced common problems concerning staffing time and space, and there was a recognition that the preference of most patients to make as few hospital visits as possible also complicated NPI teaching. Moreover, there may only be a small window of opportunity in which to effectively teach lung cancer patients a novel NPI as the period between diagnosis and the onset of severe symptoms is often short. DISCUSSION: The participants agreed that the novel symptom management NPI should be individually personalised to the needs of each patient and be available for patients when they become receptive to it. Moreover, they agreed that the intervention would be most effective if delivered to patients individually rather than in groups, outside acute medical settings where possible and closer to patient's homes, should be delivered by an HCP rather than a trained volunteer or lay person and should involve informal carers wherever practicable.

Nurse led versus lay educators support for those with asthma in primary care: a costing study.

BACKGROUND: Regular review and support for asthma self-management is promoted in guidelines. A randomised controlled trial suggested that unscheduled health care usage was similar when patients were offered self management support by a lay-trainer or practice nurses. METHODS: Following the RCT, a costing study was undertaken using the trial data to account for the cost of delivery of the service under both strategies and the resulting impact on unscheduled healthcare (measure of effectiveness) in this trial. RESULTS: One year data (n = 418) showed that 29% (61/205) of the nurse group required unscheduled healthcare (177 events) compared with 30.5% (65/213) for lay-trainers (178 events).The training costs for the lay-trainers were greater than nurses (£36 versus £18 respectively per patient, p<0.001), however, the consultation cost for lay-trainers were lower than nurses (£6 per patient versus £24, p<0.001). If the cost of unscheduled healthcare are accounted for then the costs of nurses is £161, and £135 for lay-trainers (mean difference £25, [95% CI = -£97, £149, p = 0.681]). The total costs (delivery and unscheduled healthcare) were £202 per patient for nurses versus £178 for lay-trainers, (mean difference £24, [95%CI = -£100, £147, p = 0.707]). CONCLUSIONS: There were no significant differences in the cost of training and healthcare delivery between nurse and lay trainers, and no significant difference in the cost of unscheduled health care use.

Parents' emotional and social experiences of caring for a child through cleft treatment.

Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory approach and present in detail in this article one subcategory from the analysis: managing emotions. Throughout childhood and adolescence, parents experienced conflicting emotions about their child's impairment, uncertainty about cleft treatment, and stigmatizing attitudes. Although parents attempted to manage emotional tensions by pursuing cleft treatments, the interventions could themselves be a source of conflict for them. We suggest that routine assessment of parents' emotional and social well-being should be included in cleft treatment programs, and access to psychosocial support made available.

National survey of the current provision of specialist palliative care services for patients with end-stage renal disease.

BACKGROUND: Patients with end-stage renal disease (ESRD) experience a significant symptom burden and have complex needs. However, involvement of specialist palliative care (SPC) services with these patients has previously been shown to be limited. This study assesses the current provision of and access to SPC services for ESRD patients in the UK and considers how the provision has evolved over recent years. METHODS: A questionnaire was sent to the lead clinician for all UK adult hospital, hospice and community SPC services, identified from the Hospice and Palliative Care Directory 2008. Non-responders were mailed again after 5 weeks. Descriptive statistics and qualitative thematic analysis were performed. RESULTS: Three hundred and eighteen of 611 (52%) questionnaires were returned. Ninety-six per cent stated that SPC services have a role in caring for patients with ESRD. Two hundred and eighty-one of 318 (88%) accepted referrals, and 185 of 281 (66%) reported that 'none or few were referred'. Only 7% and 17% of respondents used specific ESRD referral and treatment guidelines, respectively; whereas 79% used the Liverpool Care Pathway for the Dying Patient. Seven per cent undertook joint renal and SPC multi-disciplinary team (MDT) meetings, and 3% held joint out-patient clinics. Forty percent of respondents proposed initiatives to improve palliative care for ESRD patients, with mutual education and collaborative working being key themes for improvement. CONCLUSIONS: The majority of SPC services accept ESRD patients, but limited numbers are referred. Respondents indicated that this barrier could be addressed by closer collaboration and better communication and education between renal and SPC services. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include the use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics.

Shared decision making or paternalism in nursing consultations? A qualitative study of primary care asthma nurses' views on sharing decisions with patients regarding inhaler device selection.

BACKGROUND: Although patients with asthma would like more involvement in the decision-making process, and UK government policy concerning chronic conditions supports shared decision making, it is not widely used in practice. OBJECTIVE: To investigate how nurses approach decision making in relation to inhaler choice and long-term inhaler use within a routine asthma consultation and to better understand the barriers and facilitators to shared decision making in practice. SETTING AND PARTICIPANTS: Semi-structured interviews were conducted with post-registration, qualified nurses who routinely undertook asthma consultations and were registered on a respiratory course. Interviews were recorded, transcribed and analysed using the Framework approach. RESULTS: Twenty participants were interviewed. Despite holding positive views about shared decision making, limited shared decision making was reported. Opportunities for patients to share decisions were only offered in relation to inhaler device, which were based on the nurse's pre-selected recommendations. Giving patients this 'choice' was seen as key to improving adherence. DISCUSSION: There is a discrepancy between nurses' understanding of shared decision making and the depictions of shared decision making presented in the academic literature and NHS policy. In this study, shared decision making was used as a tool to support the nurses' agenda, rather than as a natural expression of equality between the nurse and patient. CONCLUSION: There is a misalignment between the goals of practice nurses and the rhetoric regarding patient empowerment. Shared decision making may therefore only be embraced if it improves patient outcomes. This study indicates attitudinal shifts and improvements in knowledge of 'shared decision-making' are needed if policy dictates are to be realised.

Exploring differences in referrals to a hospice at home service in two socio-economically distinct areas of Manchester, UK.

In order to provide equitable access to hospice at home palliative care services, it is important to identify the socio-economic factors associated with poorer access. In this population-based study we aimed to test the inverse care law by exploring how socio-economic status and other key demographic indicators were associated with referral rates in two distinct areas (Salford and Trafford) served by the same service. Secondary data from the UK National Census 2001, North West Cancer Intelligence Service (2004) and hospice at home service referral data (2004-06) was collated for both areas. Descriptive analysis profiled electoral ward characteristics whilst simple correlations and regression modelling estimated associations with referral rates. Referral rates were lower and cancer mortality higher in the most deprived areas (Salford). Referral rates were significantly associated with deprivation, particularly multiple deprivation, but not significantly associated with cancer mortality (service model and resources available were held constant). At the population level, the socio-economic characteristics of those referred to hospice at home rather than service provision strongly predicted referral rates. This has implications for the allocation and targeting of resources and contributes important findings to future work exploring equitable access at organizational and professional levels.