A multicentre evaluation exploring the impact of an integrated health and social care intervention for the caregivers of ICU survivors.

BACKGROUND: Caregivers and family members of Intensive Care Unit (ICU) survivors can face emotional problems following patient discharge from hospital. We aimed to evaluate the impact of a multi-centre integrated health and social care intervention, on caregiver and family member outcomes. METHODS: This study evaluated the impact of the Intensive Care Syndrome: Promoting Independence and Return to Employment (InS:PIRE) programme across 9 sites in Scotland. InS:PIRE is an integrated health and social care intervention. We compared caregivers who attended this programme with a contemporary control group of ICU caregivers (usual care cohort), who did not attend. RESULTS: The primary outcome was anxiety measured via the Hospital Anxiety and Depression Scale at 12 months post-hospital discharge. Secondary outcome measures included depression, carer strain and clinical insomnia. A total of 170 caregivers had data available at 12 months for inclusion in this study; 81 caregivers attended the InS:PIRE intervention and completed outcome measures at 12 months post-hospital discharge. In the usual care cohort of caregivers, 89 completed measures. The two cohorts had similar baseline demographics. After adjustment, those caregivers who attended InS:PIRE demonstrated a significant improvement in symptoms of anxiety (OR: 0.42, 95% CI: 0.20-0.89, p = 0.02), carer strain (OR: 0.39; 95% CI: 0.16-0.98 p = 0.04) and clinical insomnia (OR: 0.40; 95% CI: 0.17-0.77 p < 0.001). There was no significant difference in symptoms of depression at 12 months. CONCLUSIONS: This multicentre evaluation has shown that caregivers who attended an integrated health and social care intervention reported improved emotional health and less symptoms of insomnia, 12 months after the delivery of the intervention.

Psychogenic nonepileptic seizures that remit when the diagnosis is given: Just good luck?

OBJECTIVE: Some patients with psychogenic nonepileptic seizures (PNES) remit when given the diagnosis. It is not realistically possible to test this potential therapeutic effect in an Randomized Controlled Trial (RCT) so we aim to statistically demonstrate it using the temporal relationship between the communication of the diagnosis and the timing of remission. METHOD: Re-analysis of data from a study of PNES, where diagnosis was communicated, and outcomes recorded in 54 patients. Making conservative assumptions and using the binomial distribution, the Poisson distribution and the chi-squared test distribution, we calculated likelihoods of the null hypothesis: that communication of the diagnosis and remission of seizures had occurred in random temporal relationship. RESULTS: Remission occurred in the week following communication of the diagnosis in 15 out of 54 patients. The χ2 test assigned this result a p value of <0.00001. Binomial and Poisson distribution calculations also indicated that remission was highly unlikely to have occurred by chance and that, in a dataset similar to ours, was unlikely to be due to chance if occurring in more than 9 patients (16.7%). CONCLUSIONS: We showed that the observed remissions were highly unlikely to be due to chance. Where an intervention is 'short and sharp' and the outcome can be measured with reasonable temporal acuity, then this type of method may provide an alternative to RCT methodology when the latter is impracticable.

'Breaking Good News': Neurologists' experiences of discussing SUDEP with patients in Scotland.

Since the findings of a Fatal Accident Inquiry (FAI) in 2010, clinicians working in Scotland have been advised to discuss the risk of Sudden Unexpected Death in Epilepsy (SUDEP) with patients immediately or soon after a diagnosis of epilepsy is made. A thematic analysis was used to describe the experiences discussing SUDEP of 10 clinicians (six Consultant Neurologists and four Neurology Registrars) working in Scotland. Contrary to previous research, clinicians appear to be routinely discussing SUDEP in a standardized fashion with newly diagnosed patients and the FAI appears to have instigated this change in practice. Clinicians are ambivalent about the practice and whether this is a Breaking Bad News (BBN) experience. Clinicians appear to anticipate that patients will be anxious or distressed discussing SUDEP, despite their experiences that patients do not react this way. There are further concerns that the pressure to discuss SUDEP, as a result of the FAI, hinders effective communication of the SUDEP message. Implications for guideline development are discussed.

Newly diagnosed psychogenic nonepileptic seizures: health care demand prior to and following diagnosis at a first seizure clinic.

Patients with psychogenic nonepileptic seizures (PNES) are heavy users of emergency and nonemergency health care. We performed a 1-year prospective audit of use of a group of PNES-related health care items in patients with newly diagnosed (mean duration: 7.3 months) PNES from PNES onset to diagnosis and from diagnosis to 6 months postdiagnosis. Twenty-eight patients (20 women, age: 34±16 years) were responsible for 14 general practitioner home visits, 31 ambulance calls, 34 emergency department visits, 21 hospital admissions (66 inpatient days), 8 MRI scans, 24 CT scans, 2 standard EEGs, 28 short video EEG recordings, and 5 ambulatory EEG recordings. In the 6 months following diagnosis, there were 2 emergency department visits (94.1% reduction), no hospital admissions (100% reduction), 2 ambulance calls, no general practitioner visits, 1 MRI scan, and no CT scans or EEGs. The immediacy of this marked health care demand reduction suggests that the relationship between presentation of diagnosis and health care demand reduction is causal.

Mitochondrial myopathy, encephalopathy, lactic acidosis and stroke-like episodes: an important cause of stroke in young people.

Mitochondrial myopathy, encephalopathy, lactic acidosis and stroke-like episodes is a progressive, multisystem mitochondrial disease affecting children and young adults. Patients acquire disability through stroke-like episodes and have an increased mortality. Eighty per cent of cases have the mitochondrial mutation m.3243A>G which is linked to respiratory transport chain dysfunction and oxidative stress in energy demanding organs, particularly muscle and brain. It typically presents with seizures, headaches and acute neurological deficits mimicking stroke. It is an important differential in patients presenting with stroke, seizures, or suspected central nervous system infection or vasculitis. Investigations should exclude other aetiologies and include neuroimaging and cerebrospinal fluid analysis. Mutation analysis can be performed on urine samples. There is no high quality evidence to support the use of any of the agents reported in small studies. This article summarises the core clinical, biochemical, radiological and genetic features and discusses the evidence for a number of potential therapies.

Newly presenting psychogenic nonepileptic seizures: incidence, population characteristics, and early outcome from a prospective audit of a first seizure clinic.

There are few published population-based data for psychogenic nonepileptic seizures (PNES). We prospectively identified first presentations of PNES from a population of 367,566, over 3 years. PNES were diagnosed in 68 patients, in 54 of whom the diagnosis was confirmed by video/EEG recording, indicating an incidence of 4.90/100,000/year. Median diagnostic delay was 0.6 ± 0.2 year. At presentation with PNES, our patients already had high rates of psychological morbidity, medically unexplained symptoms other than PNES, and economic dependence. At 3 months postdiagnosis, 27 of 54 patients (50.0%) were spell free. For 24 of the 27 patients (88.9%), spells ceased immediately on communication of the diagnosis. At 6 months, 24 of 54 patients (44.4%) were spell free. Poor early outcome was predicted by unemployment. Our data suggest that early outcome is good in patients with recent-onset PNES, but some patients relapse quickly.

The clinical impact of the Edinburgh Cognitive and Behavioural ALS Screen (ECAS) and neuropsychological intervention in routine ALS care.

Objectives. The Edinburgh Cognitive and Behavioral ALS Screen (ECAS) is a brief multi-domain assessment designed for people with Amyotrophic Lateral Sclerosis (ALS). This study evaluated the clinical impact of using the ECAS on ALS patients, carers and healthcare professionals. A secondary aim was to evaluate the clinical impact of neuropsychological intervention. Methods. A survey of current screening practices in ALS services across the UK was undertaken. In addition comparative case studies, in seven ALS care contexts, was qualitatively explored through interviews with patients, carers and healthcare professionals. Results. 22/34 health care services responded to the survey. 95% screen patients for cognitive and behavioral changes and all used the ECAS. Thematic analysis indicated that the ECAS: raises awareness about cognitive and behavioral change between patients, carers and healthcare professionals; validates and/or reassures; identifies changes, aids understanding of the patients' presentation and informs clinical decision-making. The latter includes suitability of interventions, adaptations by the multidisciplinary team, discussions about end-of-life care, referral on to other services, and identifying carers' support needs. A number of indirect economic benefits were described. Clinical neuropsychological intervention was reported to help the multidisciplinary team manage the care particularly of complex cases, the effects on daily life, and stress of patients, carers and families. Conclusions. The ECAS has been widely implemented across ALS health care teams in the UK. Screening for cognitive/behavioral deficits and neuropsychological intervention has a positive impact on patients, carers and healthcare professionals and improves the quality of routine clinical care.

Knowledge and expectation of postconcussion symptoms in the general population.

OBJECTIVE: Beliefs about mild traumatic brain injury (MTBI) may affect complaints and their persistence. This study investigates the relationships between knowledge, experience, and expectation in the general population. METHODS: One hundred seventy-one people reported symptoms expected from vignettes about MTBI, depression, posttraumatic stress disorder (PTSD), and orthopedic injury. Then they completed a postconcussional syndrome (PCS) checklist about these vignettes and about personal symptoms. RESULTS: The ability to generate symptoms from vignettes was poor for PCS, depression, and PTSD, and was greatly improved using a PCS checklist, probably by symptom guessing. No postconcussion symptoms were associated specifically with MTBI. Those with more personal symptoms expected more symptoms. Past experience of MTBI did not improve symptom knowledge. Beliefs about the 'undesirability' of conditions were associated with expected outcomes. CONCLUSIONS: People know little about PCS. Expectations about MTBI are influenced by psychological factors that are relevant if we consider information given in hospitals. Symptom overlap means that psychological conditions such as depression may be misdiagnosed as PCS, and checklists should not be used for diagnosis.