The conversation: developing confidence to provide end of life care in Salford nursing homes

The study was funded by the Burdett Trust for Nursing and partly by Salford Primary Care Trust. A realistic evaluation design was used to collect data using a range of approaches, from before and after surveys of confidence in delivering end of life care, to participant observation and interviews. A total of 43 people were interviewed involving both staff, residents and relatives. Key Messages a) Significant resources are needed to engage staff, residents and relatives/carers with the idea of advance care planning b) Care home staff are optimistic about involving residents and relatives in planning care at the end of life and some relatives become very involved in care c) Clearly registered nurses and other care home workers such as care assistants have different roles, but the overlap between these and the appropriate boundaries would benefit from further work d) Talking to residents and relatives about their feelings and wishes for care at the end of life remains especially difficult, but education and training in key skills and knowledge can engender both ability and motivation e) Care homes need strong and well-informed leadership in order to implement the Gold Standards Framework f) Placing a relative in a care home involves strain and an ability to compromise ‘there’s no perfect place’ g) Advance care planning can reduce the distress and the number of inappropriate hospital admissions, but is challenging in the face of staff rotation and out of hours medical staff being unpredictable h) The principles of the Gold Standards Framework are widely seen as sensible, but clinical challenges include diagnosing and predicting dying trajectories, especially in heart failure, chronic pulmonary disease and dementia i) A particular concern of staff is how to approach nutrition and hydration as frailty and death approach j) Communicating about diagnosis and especially prognosis with residents who lack capacity is an increasing problem k) Natural justice suggests that resources should be allocated to the general standardisation of a good quality of care at the end of life in ALL care homes whatever their Care Quality Commission ratin

Nucleotide supplementation: a randomised double-blind placebo controlled trial of IntestAidIB in people with Irritable Bowel Syndrome [ISRCTN67764449]

Work with infants has shown that the incidence and duration of diarrhoea is lower when nucleotide supplementation is given, and animal work shows that villi height and crypt depth in the intestine is increased as a result of dietary nucleotides. Dietary nucleotides may be semi-essential under conditions of ill-health, poor diet or stress. Since people with Irritable Bowel Syndrome tend to fulfil these conditions, we tested the hypothesis that symptoms would be improved with dietary nucleotide supplementation on thirty-seven people with a diagnosis of Irritable Bowel. The study found that dietary nucleotide supplementation improved some of the symptoms of irritable bowel above baseline and placebo level

An assessment of prospective memory retrieval in women with chronic fatigue syndrome using a virtual-reality environment: an initial study

People with chronic fatigue syndrome (CFS) have increased rates of depression, anxiety, and illness intrusiveness; they may also suffer from cognitive problems such as retrospective memory (RM) deficits and concentration difficulties that can stem from diminished information-processing capability. We predicted that this diminished capacity may also lead to deficits in other cognitive functions, such as prospective memory (ProM). Event-, time-, and activity-based ProM was assessed in 11 women with CFS and 12 healthy women using a computer-generated virtual environment (VE). RM was assessed using a free-recall test, and subjective assessment of both ProM and RM was assessed by questionnaire. Groups were equivalent in age and measures of IQ. People with CFS performed slightly worse than healthy controls on both the event- and time-based ProM measures, although these were not statistically significant. However, the CFS group performed significantly worse than the healthy controls on both the free recall-task and on subjective assessment of both RM and ProM. Women with CFS do have some subtle decrements in memory, particularly RM. However, it is possible that the decrements found in the present sample would be greater in real life. Further studies utilizing both healthy controls and illness controls are now needed to ascertain how sensitive the VE measure is and to inform the development of tasks in the VE that place progressively increasing demands on working memory capacity

Words fail me: the verbal IQ deficit in inflammatory bowel disease and irritable bowel syndrome

Background: Many chronic illnesses are accompanied by impaired cognitive functioning. In people with Inflammatory Bowel Disease (IBD), there is some research to suggest a decrement in verbal IQ (VIQ), when compared to people with Irritable Bowel Syndrome (IBS) and healthy controls. Although this is an important finding, it is necessary to ensure that such deficits are not due to methodological problems such as the failure to take into account pre-morbid functioning. Methods: A total of 88 people (IBD, N 29; IBS, N 29; Controls, N 30) completed the Wechsler Abbreviated Scale of Intelligence (WASI), the Wechsler Test of Adult Reading (WATR), the Trait Rumination Questionnaire (TRQ), the Center for Epidemiologic Studies Depression Scale (CES-D), and the General Health Questionnaire (GHQ-12). Results: We found evidence of a VIQ decrement in both IBD and IBS groups when measured against both healthy controls and against their own pre-morbid IQ scores (WTAR-Predicted WAIS-III IQ measures). However, the decrement was larger (and of clinical significance) in the IBD group but not in the IBS group. Conclusion: Some tentative evidence is presented which suggests that poor VIQ performance may be due in part to interference from excessive rumination

Psychosocial factors involved in memory and cognitive failures in people with myalgic encephalomyelitis/chronic fatigue syndrome

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized by persistent emotional, mental, and physical fatigue accompanied by a range of neurological, autonomic, neuroendocrine, immune, and sleep problems. Research has shown that psychosocial factors such as anxiety and depression as well as the symptoms of the illness, have a significant impact on the quality of life of people with ME/CFS. In addition, individuals may suffer from deficits in memory and concentration. This study set out to explore the relationships between variables which have been found to contribute to cognitive performance, as measured by prospective and retrospective memory, and cognitive failures. Methods: Eighty-seven people with ME/CFS answered questionnaires measuring fatigue, depression, anxiety, social support, and general self-efficacy. These were used in a correlational design (multiple regression) to predict cognitive function (self-ratings on prospective and retrospective memory), and cognitive failures. Results: Our study found that fatigue, depression, and general self-efficacy were directly associated with cognitive failures and retrospective (but not prospective) memory. Conclusion: Although it was not possible in this study to determine the cause of the deficits, the literature in this area leads us to suggest that although the pathophysiological mechanisms of ME/CFS are unclear, abnormalities in the immune system, including proinflammatory cytokines, can lead to significant impairments in cognition. We suggest that fatigue and depression may be a result of the neurobiological effects of ME/CFS and in addition, that the neurobiological effects of the illness may give rise to both fatigue and cognitive deficits independently

The conversation: developing confidence to provide end of life care in Salford nursing homes

The study was funded by the Burdett Trust for Nursing and partly by Salford Primary Care Trust. A realistic evaluation design was used to collect data using a range of approaches, from before and after surveys of confidence in delivering end of life care, to participant observation and interviews. A total of 43 people were interviewed involving both staff, residents and relatives. Key Messages a) Significant resources are needed to engage staff, residents and relatives/carers with the idea of advance care planning b) Care home staff are optimistic about involving residents and relatives in planning care at the end of life and some relatives become very involved in care c) Clearly registered nurses and other care home workers such as care assistants have different roles, but the overlap between these and the appropriate boundaries would benefit from further work d) Talking to residents and relatives about their feelings and wishes for care at the end of life remains especially difficult, but education and training in key skills and knowledge can engender both ability and motivation e) Care homes need strong and well-informed leadership in order to implement the Gold Standards Framework f) Placing a relative in a care home involves strain and an ability to compromise ‘there’s no perfect place’ g) Advance care planning can reduce the distress and the number of inappropriate hospital admissions, but is challenging in the face of staff rotation and out of hours medical staff being unpredictable h) The principles of the Gold Standards Framework are widely seen as sensible, but clinical challenges include diagnosing and predicting dying trajectories, especially in heart failure, chronic pulmonary disease and dementia i) A particular concern of staff is how to approach nutrition and hydration as frailty and death approach j) Communicating about diagnosis and especially prognosis with residents who lack capacity is an increasing problem k) Natural justice suggests that resources should be allocated to the general standardisation of a good quality of care at the end of life in ALL care homes whatever their Care Quality Commission ratin

Multiorgan impairment in low-risk individuals with post-COVID-19 syndrome: a prospective, community-based study

OBJECTIVE: To assess medium-term organ impairment in symptomatic individuals following recovery from acute SARS-CoV-2 infection. DESIGN: Baseline findings from a prospective, observational cohort study. SETTING: Community-based individuals from two UK centres between 1 April and 14 September 2020. PARTICIPANTS: Individuals ≥18 years with persistent symptoms following recovery from acute SARS-CoV-2 infection and age-matched healthy controls. INTERVENTION: Assessment of symptoms by standardised questionnaires (EQ-5D-5L, Dyspnoea-12) and organ-specific metrics by biochemical assessment and quantitative MRI. MAIN OUTCOME MEASURES: Severe post-COVID-19 syndrome defined as ongoing respiratory symptoms and/or moderate functional impairment in activities of daily living; single-organ and multiorgan impairment (heart, lungs, kidneys, liver, pancreas, spleen) by consensus definitions at baseline investigation. RESULTS: 201 individuals (mean age 45, range 21-71 years, 71% female, 88% white, 32% healthcare workers) completed the baseline assessment (median of 141 days following SARS-CoV-2 infection, IQR 110-162). The study population was at low risk of COVID-19 mortality (obesity 20%, hypertension 7%, type 2 diabetes 2%, heart disease 5%), with only 19% hospitalised with COVID-19. 42% of individuals had 10 or more symptoms and 60% had severe post-COVID-19 syndrome. Fatigue (98%), muscle aches (87%), breathlessness (88%) and headaches (83%) were most frequently reported. Mild organ impairment was present in the heart (26%), lungs (11%), kidneys (4%), liver (28%), pancreas (40%) and spleen (4%), with single-organ and multiorgan impairment in 70% and 29%, respectively. Hospitalisation was associated with older age (p=0.001), non-white ethnicity (p=0.016), increased liver volume (p<0.0001), pancreatic inflammation (p<0.01), and fat accumulation in the liver (p<0.05) and pancreas (p<0.01). Severe post-COVID-19 syndrome was associated with radiological evidence of cardiac damage (myocarditis) (p<0.05). CONCLUSIONS: In individuals at low risk of COVID-19 mortality with ongoing symptoms, 70% have impairment in one or more organs 4 months after initial COVID-19 symptoms, with implications for healthcare and public health, which have assumed low risk in young people with no comorbidities. TRIAL REGISTRATION NUMBER: NCT04369807; Pre-results