Ways of coping and survival in Cystic Fibrosis: a 20-year longitudinal study.

BACKGROUND: The relationship between ways of coping and health outcomes has been a focus of interest for decades. There is increasing recognition that positive psychological functioning can influence health outcomes beneficially. This work investigated the role of coping in predicting survival in CF. METHODS: A longitudinal observational cohort study with a 20-year follow-up period was undertaken. At entry to the study, demographic and clinical variables were recorded, and ways of coping were assessed using the Cystic Fibrosis Coping Scale which measures four distinct ways of coping: optimism, hopefulness, distraction and avoidance. Survival outcome was measured as time in days from the date of recruitment to exit from the study, where exit was either death, loss to follow-up or the end of the follow-up period. RESULTS: Survival time was modelled using Cox's proportional hazards model. At baseline, 116 people with CF were recruited. By the census date, 54 people had died (14 men had died during 248,565 person-days of observation and 40 women had died during 358,372 person-days of observation). Optimism was the only way of coping that showed any beneficial effect on survival (RR=0.984, p=0.040) after adjustments for age, gender, ppFEV1 and the three other coping variables measured at baseline. CONCLUSION: This work suggests that optimistic coping serves as a prognostic measure of survival in CF beyond key clinical and demographic variables. Ways of coping are modifiable, providing a target for clinical intervention; to improve quality of life and clinical outcomes and potentially increase longevity.

Screening for aspiration risk associated with dysphagia in acute stroke.

BACKGROUND: Stroke can affect people's ability to swallow, resulting in passage of some food and drink into the airway. This can cause choking, chest infection, malnutrition and dehydration, reduced rehabilitation, increased risk of anxiety and depression, longer hospital stay, increased likelihood of discharge to a care home, and increased risk of death. Early identification and management of disordered swallowing reduces risk of these difficulties. OBJECTIVES: Primary objective • To determine the diagnostic accuracy and the sensitivity and specificity of bedside screening tests for detecting risk of aspiration associated with dysphagia in people with acute stroke Secondary objectives • To assess the influence of the following sources of heterogeneity on the diagnostic accuracy of bedside screening tools for dysphagia - Patient demographics (e.g. age, gender) - Time post stroke that the study was conducted (from admission to 48 hours) to ensure only hyperacute and acute stroke swallow screening tools are identified - Definition of dysphagia used by the study - Level of training of nursing staff (both grade and training in the screening tool) - Low-quality studies identified from the methodological quality checklist - Type and threshold of index test - Type of reference test SEARCH METHODS: In June 2017 and December 2019, we searched CENTRAL, MEDLINE, Embase, CINAHL, and the Health Technology Assessment (HTA) database via the Centre for Reviews and Dissemination; the reference lists of included studies; and grey literature sources. We contacted experts in the field to identify any ongoing studies and those potentially missed by the search strategy. SELECTION CRITERIA: We included studies that were single-gate or two-gate studies comparing a bedside screening tool administered by nurses or other healthcare professionals (HCPs) with expert or instrumental assessment for detection of aspiration associated with dysphagia in adults with acute stroke admitted to hospital. DATA COLLECTION AND ANALYSIS: Two review authors independently screened each study using the eligibility criteria and then extracted data, including the sensitivity and specificity of each index test against the reference test. A third review author was available at each stage to settle disagreements. The methodological quality of each study was assessed using the Quality Assessment of Studies of Diagnostic Accuracy (QUADAS-2) tool. We identified insufficient studies for each index test, so we performed no meta-analysis. Diagnostic accuracy data were presented as sensitivities and specificities for the index tests. MAIN RESULTS: Overall, we included 25 studies in the review, four of which we included as narratives (with no accuracy statistics reported). The included studies involved 3953 participants and 37 screening tests. Of these, 24 screening tests used water only, six used water and other consistencies, and seven used other methods. For index tests using water only, sensitivity and specificity ranged from 46% to 100% and from 43% to 100%, respectively; for those using water and other consistencies, sensitivity and specificity ranged from 75% to 100% and from 69% to 90%, respectively; and for those using other methods, sensitivity and specificity ranged from 29% to 100% and from 39% to 86%, respectively. Twenty screening tests used expert assessment or the Mann Assessment of Swallowing Ability (MASA) as the reference, six used fibreoptic endoscopic evaluation of swallowing (FEES), and 11 used videofluoroscopy (VF). Fifteen screening tools had an outcome of aspiration risk, 20 screening tools had an outcome of dysphagia, and two narrative papers did not report the outcome. Twenty-one screening tests were carried out by nurses, and 16 were carried out by other HCPs (not including speech and language therapists (SLTs)). We assessed a total of six studies as low risk across all four QUADAS-2 risk of bias domains, and we rated 15 studies as low concern across all three applicability domains. No single study demonstrated 100% sensitivity and specificity with low risk of bias for all domains. The best performing combined water swallow and instrumental tool was the Bedside Aspiration test (n = 50), the best performing water plus other consistencies tool was the Gugging Swallowing Screen (GUSS; n = 30), and the best water only swallow screening tool was the Toronto Bedside Swallowing Screening Test (TOR-BSST; n = 24). All tools demonstrated combined highest sensitivity and specificity and low risk of bias for all domains. However, clinicians should be cautious in their interpretation of these findings, as these tests are based on single studies with small sample sizes, which limits the estimates of reliability of screening tests. AUTHORS' CONCLUSIONS: We were unable to identify a single swallow screening tool with high and precisely estimated sensitivity and specificity based on at least one trial with low risk of bias. However, we were able to offer recommendations for further high-quality studies that are needed to improve the accuracy and clinical utility of bedside screening tools.

Oral care practices in stroke: findings from the UK and Australia.

AIMS: To examine current practice, perceptions of healthcare professionals and factors affecting provision for oral care post-stroke in the UK and Australia. BACKGROUND: Poor oral care has negative health consequences for people post-stroke. Little is known about oral care practice in hospital for people post-stroke and factors affecting provision in different countries. DESIGN: A cross-sectional survey. METHODS: Questionnaires were mailed to stroke specialist nurses in UK and Australian hospitals providing inpatient acute or rehabilitation care post-stroke. The survey was conducted between April and November 2019. Non-respondents were contacted up to five times. RESULTS: Completed questionnaires were received from 150/174 (86%) hospitals in the UK, and 120/162 (74%) in Australia. A total of 52% of UK hospitals and 30% of Australian hospitals reported having a general oral care protocol, with 53% of UK and only 13% of Australian hospitals reporting using oral care assessment tools. Of those using oral care assessment tools, 50% of UK and 38% of Australian hospitals used local hospital-specific tools. Oral care assessments were undertaken on admission in 73% of UK and 57% of Australian hospitals. Staff had received oral care training in the last year in 55% of UK and 30% of Australian hospitals. Inadequate training and education on oral care for pre-registration nurses were reported by 63% of UK and 53% of Australian respondents. CONCLUSION: Unacceptable variability exists in oral care practices in hospital stroke care settings. Oral care could be improved by increasing training, performing individual assessments on admission, and using standardised assessment tools and protocols to guide high quality care. The study highlights the need for incorporating staff training and the use of oral care standardised assessments and protocols in stroke care in order to improve patient outcomes.

Seroprevalence of SARS-CoV-2 infection in healthcare workers in a large teaching hospital in the North West of England: a period prevalence survey.

OBJECTIVES: Since its emergence in late 2019, SARS-CoV-2 has caused a global pandemic that has significantly challenged healthcare systems. Healthcare workers have previously been shown to have experienced higher rates of infection than the general population. We aimed to assess the extent of infection in staff working in our healthcare setting. DESIGN: A retrospective analysis of antibody results, compared with staff demographic data, and exposure to patients with COVID-19 infection. SETTING: A large teaching hospital in the North West of England. PARTICIPANTS: 4474 staff in diverse clinical and non-patient facing roles who volunteered for SARS-CoV-2 antibody testing by the Roche Elecsys assay between 29 May and 4 July 2020. RESULTS: Seroprevalence was 17.4%. Higher rates were seen in Asian/Asian British (OR 1.61, 95% CI 1.27 to 2.04) and Black/Black British (OR 2.08, 95% CI 1.25 to 3.45) staff. Staff working in any clinical location were more likely to be seropositive (OR 2.68, 95% 2.27 to 3.15). Staff were at an increased risk of seropositivity as the 'per 100 COVID-19 bed-days change' increased in the clinical area in which they worked (OR 1.12, 95% 1.10 to 1.14). Staff working in critical care were no more likely to have detectable antibodies than staff working in non-clinical areas. Symptoms compatible with COVID-19 were reported in 41.8% and antibodies were detected in 30.7% of these individuals. In staff who reported no symptoms, antibodies were detected in 7.7%. In all staff who had detectable antibodies, 25.2% reported no symptoms. CONCLUSIONS: Staff working in clinical areas where patients with COVID-19 were nursed were more likely to have detectable antibodies. The relationship between seropositivity in healthcare workers and the increase in 'per 100 COVID-19 bed-days' of the area in which they worked, although statistically significant, was weak, suggesting other contributing factors to the risk profile. Of staff with detectable antibodies and therefore evidence of prior infection, a quarter self-reported that they had experienced no compatible symptoms. This has implications for potential unrecorded transmission in both staff and patients.

Predictors of recognition of out of hospital cardiac arrest by emergency medical services call handlers in England: a mixed methods diagnostic accuracy study.

BACKGROUND: The aim of this study was to identify key indicator symptoms and patient factors associated with correct out of hospital cardiac arrest (OHCA) dispatch allocation. In previous studies, from 3% to 62% of OHCAs are not recognised by Emergency Medical Service call handlers, resulting in delayed arrival at scene. METHODS: Retrospective, mixed methods study including all suspected or confirmed OHCA patients transferred to one acute hospital from its associated regional Emergency Medical Service in England from 1/7/2013 to 30/6/2014. Emergency Medical Service and hospital data, including voice recordings of EMS calls, were analysed to identify predictors of recognition of OHCA by call handlers. Logistic regression was used to explore the role of the most frequently occurring (key) indicator symptoms and characteristics in predicting a correct dispatch for patients with OHCA. RESULTS: A total of 39,136 dispatches were made which resulted in transfer to the hospital within the study period, including 184 patients with OHCA. The use of the term 'Unconscious' plus one or more of symptoms 'Not breathing/Ineffective breathing/Noisy breathing' occurred in 79.8% of all OHCAs, but only 72.8% of OHCAs were correctly dispatched as such. 'Not breathing' was associated with recognition of OHCA by call handlers (Odds Ratio (OR) 3.76). The presence of key indicator symptoms 'Breathing' (OR 0.29), 'Reduced or fluctuating level of consciousness' (OR 0.24), abnormal pulse/heart rate (OR 0.26) and the characteristic 'Female patient' (OR 0.40) were associated with lack of recognition of OHCA by call handlers (p-values < 0.05). CONCLUSIONS: There is a small proportion of calls in which cardiac arrest indicators are described but the call is not dispatched as such. Stricter adherence to dispatch protocols may improve call handlers' OHCA recognition. The existing dispatch protocol would not be improved by the addition of further terms as this would be at the expense of dispatch specificity.

An educational intervention to prevent overweight in pre-school years: a cluster randomised trial with a focus on disadvantaged families.

BACKGROUND: Early prevention is a promising strategy for reducing obesity in childhood, and Early Years settings are ideal venues for interventions. This work evaluated an educational intervention with the primary aim of preventing overweight and obesity in pre-school children. METHODS: A pragmatic, cluster randomised trial with a parallel, matched-pair design was undertaken. Interventions were targeted at both the cluster (Early Years' Centres, matched by geographical area) and individual participant level (families: mother and 2-year old child). At the cluster level, a staff training intervention used the educational resource Be Active, Eat Healthy. Policies and provision for healthy eating and physical activity were evaluated at baseline and 12-months. The intervention at participant level was the Healthy Heroes Activity Pack: delivered over 6 months by Centre staff to promote healthy eating and physical activity in a fun, interactive way. Child and parent height and weight were measured at four time-points over 2 years. The trial primary outcome was the change in BMI z-score of the child between ages 2 and 4 years. Secondary outcomes consisted of parent-reported measures administered at baseline and two-year follow-up. RESULTS: Five pairs of Early Years' Centres were recruited. Four pairs were analysed as one Centre withdrew (47 intervention families; 34 control families). At the cluster level, improvement in Centre policies and practices was similar for both groups (p = 0.830). At the participant level, the intervention group reduced their mean BMI z-score between age 2 and 4 years (p = 0.002; change difference 0.49; 95% CI 0.17 to 0.80) whereas the control group showed increasing BMI z-score throughout. Changes in parent-reported outcomes and parent BMI (p = 0.582) were similar in both groups. CONCLUSIONS: The Healthy Heroes educational resource deterred excess weight gain in pre-school children from poor socioeconomic areas. With training, Early Years' staff can implement the Healthy Heroes programme. TRIAL REGISTRATION: ISRCTN22620137 Registered 21st December 2016.

Pilot Study Comparing Closed Versus Open Tracheal Suctioning in Postoperative Neonates and Infants With Complex Congenital Heart Disease.

OBJECTIVES: To determine the hemodynamic effect of tracheal suction method in the first 36 hours after high-risk infant heart surgery on the PICU and to compare open and closed suctioning techniques. DESIGN: Pilot randomized crossover study. SETTING: Single PICU in United Kingdom. PARTICIPANTS: Infants undergoing surgical palliation with Norwood Sano, modified Blalock-Taussig shunt, or pulmonary artery banding in the first 36 hours postoperatively. INTERVENTIONS: Infants were randomized to receive open or closed (in-line) tracheal suctioning either for their first or second study tracheal suction in the first 36 hours postoperatively. MEASUREMENTS AND MAIN RESULTS: Twenty-four infants were enrolled over 18 months, 11 after modified Blalock-Taussig shunt, seven after Norwood Sano, and six after pulmonary artery banding. Thirteen patients received the open suction method first followed by the closed suction method second, and 11 patients received the closed suction method first followed by the open suction method second in the first 36 hours after their surgery. There were statistically significant larger changes in heart rate (p = 0.002), systolic blood pressure (p = 0.022), diastolic blood pressure (p = 0.009), mean blood pressure (p = 0.007), and arterial saturation (p = 0.040) using the open suction method, compared with closed suctioning, although none were clinically significant (defined as requiring any intervention). CONCLUSIONS: There were no clinically significant differences between closed and open tracheal suction methods; however, there were statistically significant greater changes in some hemodynamic variables with open tracheal suctioning, suggesting that closed technique may be safer in children with more precarious physiology.

Longitudinal impact of demographic and clinical variables on health-related quality of life in cystic fibrosis.

OBJECTIVES: The insights that people with cystic fibrosis have concerning their health are important given that aspects of health-related quality of life (HRQoL) are independent predictors of survival and a decrease in lung function is associated with a decrease in HRQoL over time. Cross-sectional data suggest that key variables, other than lung function, are also associated with HRQoL--although study results are equivocal. This work evaluates the relationship between these key demographic and clinical variables and HRQoL longitudinally. DESIGN: Longitudinal observational study. Observations were obtained at seven time points: approximately every 2 years over a 12-year period. SETTING: Large adult cystic fibrosis centre in the UK. PARTICIPANTS: 234 participants aged 14-48 years at recruitment. OUTCOME MEASURE: Nine domains of HRQoL (Cystic Fibrosis Quality of Life Questionnaire) in relation to demographic (age, gender) and clinical measures (forced expiratory volume in 1 s, (FEV1)% predicted, body mass index (BMI), cystic fibrosis-related diabetes, Burkholderia cepacia complex, totally implantable vascular access device, nutritional and transplant status). RESULTS: A total of 770 patient assessments were obtained for 234 patients. The results of random coefficients modelling indicated that demographic and clinical variables were identified as being significant for HRQoL over time. In addition to lung function, transplant status, age, having a totally implantable vascular access device, cystic fibrosis-related diabetes, BMI and B. cepacia complex impacted on many HRQoL domains longitudinally. Gender was important for the domain of body image. CONCLUSIONS: Demographic and changes in clinical variables were independently associated with a change in HRQoL over time. Compared with these longitudinal data, cross-sectional data are inadequate when evaluating the relationships between HRQoL domains and key demographic and clinical variables, as they fail to recognise the full impact of the CF disease trajectory and its treatments on quality of life.

Depression and anxiety in adolescents and adults with cystic fibrosis in the UK: a cross-sectional study.

BACKGROUND: The International Depression/anxiety Epidemiological Study (TIDES) in the UK aimed: (i) to establish the prevalence of anxiety and depression amongst people with CF compared to a normative sample; (ii) to establish the association between mood, demographic and clinical variables; and (iii) to provide guidance for specialist-referral decision-making. METHODS: Patients (≥12years) completed the Hospital Anxiety and Depression Scale (HADS). CF-HADS scores, expressed as percentiles, were compared with a normative sample. Multiple-regression analysis explored associations between demographic, clinical and mood variables. RESULTS: Thirty-nine CF centres recruited 2065 patients. Adults with CF were similar in terms of anxiety and depression to the general population. Adolescents with CF were less anxious and depressed. For adult patients, older age, unemployment for health reasons and poor lung function were associated with disordered mood. Gender-specific CF-percentile scores were calculated. CONCLUSION: Surveillance, with attention to gender and risk factors is advocated. This work provides unique benchmark scores to aid referral decision-making.

Light smoking at base-line predicts a higher mortality risk to women than to men; evidence from a cohort with long follow-up.

BACKGROUND: There is conflicting evidence as to whether smoking is more harmful to women than to men. The UK Cotton Workers' Cohort was recruited in the 1960s and contained a high proportion of men and women smokers who were well matched in terms of age, job and length of time in job. The cohort has been followed up for 42 years. METHODS: Mortality in the cohort was analysed using an individual relative survival method and Cox regression. Whether smoking, ascertained at baseline in the 1960s, was more hazardous to women than to men was examined by estimating the relative risk ratio women to men, smokers to never smoked, for light (1-14), medium (15-24), heavy (25+ cigarettes per day) and former smoking. RESULTS: For all-cause mortality relative risk ratios were 1.35 for light smoking at baseline (95% CI 1.07-1.70), 1.15 for medium smoking (95% CI 0.89-1.49) and 1.00 for heavy smoking (95% CI 0.63-1.61). Relative risk ratios for light smoking at baseline for circulatory system disease was 1.42 (95% CI 1.01 to 1.98) and for respiratory disease was 1.89 (95% CI 0.99 to 3.63). Heights of participants provided no explanation for the gender difference. CONCLUSIONS: Light smoking at baseline was shown to be significantly more hazardous to women than to men but the effect decreased as consumption increased indicating a dose response relationship. Heavy smoking was equally hazardous to both genders. This result may help explain the conflicting evidence seen elsewhere. However gender differences in smoking cessation may provide an alternative explanation.

Probation as a setting for building well-being through integrated service provision: evaluating an Offender Health Trainer service.

INTRODUCTION: The NHS Health Trainer Programme was launched in England and Wales in 2005 with the aim of tackling health inequalities. While initially focusing on geographical communities, the initiative has extended its reach to particular population groups, such as offenders and their families, who experience high levels of physical and mental health needs and wider social exclusion. This paper reports on the evaluation of the Offender Health Trainer service delivered in probation settings in Bury, Rochdale and Oldham (Greater Manchester). This service has sought to improve the health of offenders, improve their access to mainstream services, and help reduce health inequalities - as well as facilitate rehabilitation and improve job prospects for ex-offenders through employment as health trainers. AIMS: This evaluative research study aimed to explore the delivery of the Offender Health Trainer service and examine its impact on service users. The study design and limited time frame meant that the research was focused on the journeys of service users rather than on long-term outcomes. METHODS: The evaluation used a mixed-methods approach, comprising two key elements: the interrogation and analysis of routinely collected quantitative data extracted from the National Health Trainer Data Collection Recording System (DCRS); and in-depth qualitative research using interviews and focus groups with clients and health trainers. RESULTS: The evaluation points to the overall success of the service in meeting its aims and impacting positively on the lives of offenders. It reveals promising trends in behaviour change and self-perceived health and well-being, articulating a rich narrative detailing how the service has helped probation clients tackle multiple interwoven problems and build hope and self-belief. Of particular importance was the health trainers' experience of the criminal justice system, which resonated with and inspired clients, developing trust and motivation to change. CONCLUSIONS: While the research inevitably had limitations, this study suggests that the health trainer model can be effectively implemented within the probation setting, making a valuable contribution to the improvement of offenders' health and well-being by working in ways that acknowledge the connections between personal lifestyle and wider determinants of health. Within the context of forthcoming probation reforms, it will be increasingly important to develop services that highlight these links and to invest in appropriate evaluation that can generate further learning about 'what works and why'.

Longitudinal association between lung function and health-related quality of life in cystic fibrosis.

BACKGROUND: Lung function is an important indicator of cystic fibrosis disease status and those with better forced expiratory volume in 1 s (FEV(1))% predicted have tended to report a better health-related quality of life (HRQoL) in cross-sectional studies. The relationship between lung function and HRQoL over time is unknown. This work assesses the natural progression of HRQoL reporting over many years and compares assessments across a whole decade and evaluates the relationship between lung function and HRQoL longitudinally. METHODS: Demographic (age, gender), clinical (FEV(1)% predicted, body mass index, diabetes, Burkholderia cepacia complex, intravenous access device and nutritional status) and HRQoL (Cystic Fibrosis Quality of Life Questionnaire) variables were obtained every 2 years over a 12-year period (seven time points from 1998 to 2010). RESULTS: HRQoL and lung function declined slowly over time and significant decade changes were observed for FEV(1)% predicted and the nine domains of the Cystic Fibrosis Quality of Life Questionnaire. The results of random coefficient modelling indicated that, at the population level, decreasing FEV(1)% predicted was associated with decreasing HRQoL after adjusting for confounding variables. However, the percentage of patients for whom a decrease in lung function was associated with a decrease in HRQoL differed according to the quality of life domain. CONCLUSIONS: HRQoL and FEV(1)% predicted decline slowly; nevertheless, a decrease in lung function predicted a decrease in HRQoL over time.

Incentives as connectors: insights into a breastfeeding incentive intervention in a disadvantaged area of North-West England.

BACKGROUND: Incentive or reward schemes are becoming increasingly popular to motivate healthy lifestyle behaviours. In this paper, insights from a qualitative and descriptive study to investigate the uptake, impact and meanings of a breastfeeding incentive intervention integrated into an existing peer support programme (Star Buddies) are reported. The Star Buddies service employs breastfeeding peer supporters to support women across the ante-natal, intra-partum and post-partum period. METHODS: In a disadvantaged area of North West England, women initiating breastfeeding were recruited by peer supporters on the postnatal ward or soon after hospital discharge to participate in an 8 week incentive (gifts and vouchers) and breastfeeding peer supporter intervention. In-depth interviews were conducted with 26 women participants who engaged with the incentive intervention, and a focus group was held with the 4 community peer supporters who delivered the intervention. Descriptive analysis of routinely collected data for peer supporter contacts and breastfeeding outcomes before and after the incentive intervention triangulated and retrospectively provided the context for the qualitative thematic analysis. RESULTS: A global theme emerged of 'incentives as connectors', with two sub-themes of 'facilitating connections' and 'facilitating relationships and wellbeing'. The incentives were linked to discussion themes and gift giving facilitated peer supporter access for proactive weekly home visits to support women. Regular face to face contacts enabled meaningful relationships and new connections within and between the women, families, peer supporters and care providers to be formed and sustained. Participants in the incentive scheme received more home visits and total contact time with peer supporters compared to women before the incentive intervention. Full participation levels and breastfeeding rates at 6-8 weeks were similar for women before and after the incentive intervention. CONCLUSION: The findings suggest that whilst the provision of incentives might not influence women's intentions or motivations to breastfeed, the connections forged provided psycho-social benefits for both programme users and peer supporters.

Home percutaneous endoscopic gastrostomy feeding: perceptions of patients, carers, nurses and dietitians.

AIM: This paper is a report of a study to compare the perceptions of adult patients, family carers, nurses and dietitians regarding home percutaneous endoscopic gastrostomy feeding. BACKGROUND: Healthcare professionals have a major role in patient selection for gastrostomy placement and the provision of aftercare but it is not clear if patients, their carers and healthcare professionals have similar perceptions of the initiation and delivery of feeding and of the care in general. METHOD: A cross-sectional mixed-method study using purposive sampling, semi-structured interviews and questionnaires was performed. Interviews were undertaken during 2005 with adult patients and carers of adults receiving home feeding. A questionnaire containing comparable questions was distributed to the lead district nurse and dietitian providing the individual patient's care. Binomial regression was used to analyse any differences in perceptions across the groups of respondents. RESULTS: Nurses and dietitians had similar perceptions of gastrostomy feeding in adults. Family carers' perceptions matched those of professionals more closely than did those of patients. The greatest difference in perceptions was between patients and their family carers. Respondents' views about success of feeding and the appropriateness of the feeding regimen were similar, but greater differences existed regarding quality of life, withdrawal of feeding and choice in decision-making about tube placement. CONCLUSION: There is a need for increased patient and carer involvement in decision-making and for sufficient, appropriate information to facilitate informed decision-making. Practitioners who involve carers in decision-making, where patients lack capacity, need to be aware that carers may not represent the views of patients.