A meta-analytic evaluation of the effectiveness and durability of psychotherapy for adults presenting with functional dissociative seizures.

BACKGROUND: Psychological interventions are the most recommended treatment for functional/dissociative seizures (FDS); however, there is ongoing uncertainty about their effectiveness on seizure outcomes. METHODS: This systematic review and meta-analysis synthesises the available data. In February 2023, we completed a systematic search of four electronic databases. We described the range of seizure-related outcomes captured, used meta-analytic methods to analyse data collected during treatment and follow-up; and explored sources of heterogeneity between outcomes. RESULTS: Overall, 44 relevant studies were identified involving 1,300 patients. Most were categorised as being at high (39.5 %) or medium (41.9 %) risk of bias. Seizure frequency was examined in all but one study; seizure intensity, severity or bothersomeness in ten; and seizure duration and cluster in one study each. Meta-analyses could be performed on seizure freedom and seizure reduction. A pooled estimate for seizure freedom at the end of treatment was 40 %, while for follow-up it was 36 %. Pooled rates for ≥50 % improvement in seizure frequency were 66 % and 75 %. None of the included moderator variables for seizure freedom were significant. At the group level, seizure frequency improved during the treatment phase with a moderate pooled effect size (d = 0.53). FDS frequency reduced by a median of 6.5 seizures per month. There was also evidence of improvement of the other (non-frequency) seizure-related measures with psychological therapy, but data were insufficient for meta-analysis. CONCLUSIONS: The findings of this study complement a previous meta-analysis describing psychological treatment-associated improvements in non-seizure-related outcomes. Further research on the most appropriate FDS-severity measure is needed.

Exploratory and confirmatory factor analysis of emPHasis-10: The health-related quality-of-life measure in pulmonary hypertension.

The emPHasis-10 is a health-related quality of life (HRQoL) unidimensional measure developed specifically for adults with pulmonary hypertension. The tool has excellent psychometric properties and is well used in research and clinical settings. Its factor structure has not been examined, which may help to identity a complimentary approach to using the measure to examine patient functioning. We performed an exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) on a data set collected from 263 adults with PH recruited from a community setting. The EFA suggested the emPHasis-10 consists of three underlying latent variables, which based on the loading of items, were termed "fatigue" (Items 3, 4, and 5), "independence" (Items 7, 8, 9, and 10), and "breathlessness" (Items 1, 2, and 6). All factors were found to have good internal consistency. "Independence" accounted for most of the variance (29%), followed by "breathlessness" (22%) and "fatigue" (19%). The CFA looked to confirm the fit of a three-factor model. A higher-order model was found to be the best fit consisting of HRQoL as a superordinate factor, for which the association between this factor and the 10 items was mediated through the three latent factors. Further analyses were performed testing the validity of the latent variables revealing all were significantly correlated with self-reported measures of depression, anxiety, health-anxiety, and dyspnea. Our analyses support the emPHasis-10 as a measure of HRQoL, while also proposing the clinical utility of examining the three emergent factors, which could be used to glean additional insight into the respondent's functioning and inform care.

A systematic review of psychological interventions in adults with pulmonary hypertension: Is the evidence-base disproportionate to the problem?

INTRODUCTION: Our understanding of the psychological impact of living with pulmonary hypertension (PH) is growing, particularly for how anxiety and depression present in this group. There is evidence for the use of psychological interventions in other chronic lung conditions; however, trials focusing on adults with PH have yet to be subject to a systematic review. METHODS: We systematically searched four databases for evidence examining the effectiveness of psychological interventions for adults with PH. A narrative approach has been used to present findings. RESULTS: Overall, 186 unique articles were identified of which four were suitable. Data was gathered from 143 individuals. Cognitive behavioural therapy (CBT), metacognitive therapy (MCT) or counselling were investigated. All three studies reported a significant reduction in anxiety and depression, and some secondary outcomes were also associated with change. DISCUSSION: The evidence supporting the use of psychological therapies for adults with PH is promising, although limited. There is an urgent need for more research in this area to better understand how we can support this clinical group.

A meta-analytic review of the effectiveness of psychological treatment of functional/dissociative seizures on non-seizure outcomes in adults.

Psychological therapies are considered the treatment of choice for functional/dissociative seizures (FDSs). Although most previous studies have focused on seizure persistence or frequency, it has been argued that well-being or health-related quality of life outcomes may actually be more meaningful. This study contributes by summarizing and meta-analyzing non-seizure outcomes to quantify the effectiveness of psychological treatment in this patient group. A pre-registered systematic search identified treatment studies (e.g., cohort studies, controlled trials) in FDSs. Data from these studies were synthesized using multi-variate random-effects meta-analysis. Moderators of treatment effect were examined using treatment characteristics, sample characteristics, and risk of bias. A total of 171 non-seizure outcomes across 32 studies with a pooled sample size of N = 898 yielded a pooled effect-size of d = .51 (moderate effect size). The outcome domain assessed and the type of psychological treatment were significant moderators of reported outcomes. Greater rates of improvement were demonstrated for outcomes assessing general functioning. Behavioral treatments emerged as particularly effective interventions. Psychological interventions are associated with clinical improvements across a broad array of non-seizure outcomes, over and above seizure frequency, in adults with FDSs.

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis.

Pulmonary hypertension (PH) can have a multifaced impact both on the affected individual and close family members. However there are relatively few studies that have sought to identify potential protective factors. Individual differences in ability to be self-compassionate are known to be implicated in adjustment in other long-term conditions and are now featuring in the provision of care for a number of conditions. This is a cross-sectional study that investigated the relationship between self-compassion, demographic, PH-related information, and measures of psychosocial functioning in adults with PH (n = 65) and caregivers (n = 29). Individuals with PH and caregivers of someone with PH completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion, and in those with PH, health-related quality of life, and in carers, caregiver burden. Data were analyzed using hierarchical regression analyses. Surprisingly, participants with PH and caregivers did not significantly differ on rates of depression (p = 0.19) or anxiety (p = 0.57) with both scoring relatively high. Components of self-compassion were associated with psychological functioning in both individuals and caregivers. Greater self-compassion was associated with fewer symptoms of anxiety and depression, and greater health-related quality of life in individuals with PH and lower burden in caregivers. More specifically, multiple regression analyses revealed after controlling for age, gender, and duration of PH, self-compassion was a significant predictor of anxiety and depression in people with PH, and of anxiety and caregiver burden in carers. These findings add to the evidence base indicating that there can be a range of burdens experienced by both people living with PH and their wider families. Further, this study uniquely suggests that psychological and supportive interventions that seek to build self-compassion may be useful to develop and test in this clinical group.

Cognitive and behavioral processes predict anxiety and depression in patients with pulmonary hypertension.

Emotional and psychological difficulties cannot fully be explained by disease-related factors in people with pulmonary hypertension (PH). This study examined the relationship between anxiety, depression, demographic, objective and subjective PH factors, and self-reported cognitive and behavioral processes, which have been associated with mood in clinical and nonclinical samples. This is a secondary analysis of baseline data from 77 adults with PH who took part in a randomized controlled trial of a self-help intervention targeting anxiety in PH. Participants completed self-report measures including: demographic (age, gender, ethnicity, education, employment) and clinical questionnaire (PH diagnosis, functional class, years since diagnosis), depression (PHQ-9), anxiety (GAD-7), health-related quality of life (emPHAsis-10), dyspnea (D12), and cognitive and behavioral processes (CBP-Q) scale. Data were analyzed using correlational and regression analyses. Overall, 70% and 63% of participants scored above the clinical cut off for anxiety and depression, respectively. Demographics were not associated with anxiety or depression. PH-related factors were correlated with depression but not anxiety. A multiple regression analysis suggested dyspnea and cognitive processes significantly predicted anxiety whereas behavioral processes were not a unique predictor. In contrast, dyspnea and behavioral processes predicted depression whereas cognitive processes did not. While a body of evidence exists demonstrating people with PH are more likely to experience anxiety and depression, less is known about factors that cause and maintain these disorders. Findings highlight the significance of subjective factors that could be a target for screening and psychological treatments for emotional difficulties, such as cognitive behavioral therapy.

Long-COVID in people with intellectual disabilities: A call for research of a neglected area.

Background: Long-COVID (also known as post-coronavirus-19 syndrome) is a term used to describe symptoms that people experience following their recovery from the COVID-19 virus. The severity of long-COVID is well recognised, with healthcare providers commissioning services to diagnose and treat those affected, as well as funded research into the condition. Methods: We performed a systematic search for relevant articles but were unable to find any research on long-COVID in people with intellectual disabilities. Due to the lack of data, we have only been able to make extrapolations from what is known about the condition within the general population. Findings: We provide an overview of long-COVID and its potential relevance to people with an intellectual disability. We have focused specifically on symptoms or signs, prevalence, risk factors and treatments of the condition in this group, highlighting areas for clinical practice and future research from a psychosocial perspective. We raise serious questions about our current understanding and the availability of the evidence-based to inform treatments tailored towards this population. Conclusion: This is the first report that we are aware of on the topic of long-COVID in people with an intellectual disability. The lack of research is preventing us from gaining a greater understanding of how the condition impacts people with an intellectual disability.

Coping styles associated with depression, health anxiety and health-related quality of life in pulmonary hypertension: cross-sectional analysis.

OBJECTIVES: Pulmonary hypertension (PH) is a life-shortening disease associated with early mortality and high morbidity. With advancements in medical treatment, people are living longer with the disease, and research is now needed to explore variables that help to enhance patient-reported outcomes. This study investigated the coping strategies of individuals with PH and examined the relationship between coping, depression, health anxiety and health-related quality of life (HRQoL). DESIGN: A cross-sectional survey design was used. PARTICIPANTS: Participants (n=121) were recruited from membership of Pulmonary Hypertension Association (PHA) UK. OUTCOME MEASURES: Participants completed a series of questionnaires assessing depression (Patient Health Questionnaire-9), health anxiety (Short Health Anxiety Inventory), HRQoL (emPHasis-10) and coping (Brief COPE). A principal component analysis was used to identify participants' coping profile. A series of correlational, linear and moderated multiple regression analyses were performed to examine the relationship between coping and health-related outcomes. RESULTS: Overall, 43% participants met criteria for potential clinical depression. Depression and health anxiety were strongly associated with HRQoL, explaining 37% and 30% of variance respectively (p<0.001). A principal component analysis identified a four-component model of coping. Dimensions were named based on construct items: 'cognitive and affirmation coping' (seven items), 'passive coping' (four items), 'external coping' (seven items) and 'substance use coping' (two items). Cognitive and affirmation and external coping moderated the relationship between depression and HRQoL, with high use of these coping strategies reducing the impact of depression on HRQoL. External coping also moderated the effect of health anxiety on HRQoL. CONCLUSIONS: The results uniquely highlight the importance of coping styles and psychological distress in predicting HRQoL in PH. Our findings indicate the importance to assess for psychological distress in this population and suggest the need to offer psychological interventions that take into account coping resources and strategies.

Examining the impact of pulmonary hypertension on nonprofessional caregivers: A mixed-methods systematic review.

Pulmonary hypertension (PH) is a heterogeneous condition, associated with a high symptom burden and high rates of disability. While nonprofessional caregivers are essential in helping patients live better, little is known about the impact on caregivers and support that is currently available. This review has synthesised evidence examining experiences of caregivers of adults with PH. Web of Science, PubMed, PsycINFO, and Cochrane Library were searched for all types of study design. Articles were evaluated and analysed using a Joanna Briggs Institute approach. Eight articles primarily focussed on pulmonary arterial hypertension and chronic thromboembolic PH were identified investigating 456 caregivers from at least 10 countries. Four categories were identified describing caregiver demographics, responsibilities, impact, and support. Four integrated themes emerged identifying possible unmet needs and therapeutic targets: (1) Change, reflecting the various demands caring had on people as they attempted to balance the needs of the patient and their own; (2) Preparedness, discussing how caregivers could feel uncertain and unskilled for their duties and unsupported; (3) Isolation, with caregivers often encountering challenges to gaining information on PH turning to PH organisations and others affected for support and connection; and (4) Physical and mental demands, reflecting the multifaceted impact of caring. Findings add to the evidence demonstrating that PH can have a considerable impact on patients' support network. Providing support for caregivers of people with PH is an unmet need and may have a positive impact on patients and is an area that requires further research.

Self-help cognitive behavioural therapy for anxiety in pulmonary hypertension: pilot randomised controlled trial.

Objective: People with pulmonary hypertension (PH) are at an increased risk of experiencing anxiety disorders. This study developed and tested the acceptability, feasibility and preliminary effectiveness of a cognitive behavioural self-help intervention for anxiety in adults with PH using a pilot randomised control trial design. Methods: Individuals with PH recruited from pulmonary hypertension associations were randomised to either receive a newly developed self-help intervention (n=37) or a wait-list condition (n=40). Acceptability was explored using mixed-methods questionnaires. A 2×3 repeated-measures analysis of variance was used to explore anxiety (GAD-7), depression (PHQ-9), health-related quality of life (emPHAsis-10), dyspnoea (D-12), self-mastery (Self-Mastery Scale) and mood-related cognitions and behaviours (CBP-Q) at baseline, post-intervention and 1-month follow up. A mediation analysis was performed to examine potential mechanisms of change. Results: Dropout was low at 15.6%. All participants would recommend the intervention to another person with PH and felt it had helped with their anxiety. Participants in the intervention group reported a reduction in anxiety, depression and cognitive and behavioural processes linked with mood disorders, compared to the control group. Change in unhelpful cognitions and behaviours mediated the relationship between intervention condition and change in anxiety and depression. Discussion: The intervention was found to be acceptable, feasible and safe. Anxiety at baseline was higher than previously observed, which could be associated with the additional burden caused by COVID-19 as the intervention was trialled during the pandemic. Findings add to the growing evidence supporting the use of psychological therapies, including cognitive behavioural therapy, in this clinical group.

Cognitive-behavioural therapy compared with standardised medical care for adults with dissociative non-epileptic seizures: the CODES RCT.

BACKGROUND: Dissociative (non-epileptic) seizures are potentially treatable by psychotherapeutic interventions; however, the evidence for this is limited. OBJECTIVES: To evaluate the clinical effectiveness and cost-effectiveness of dissociative seizure-specific cognitive-behavioural therapy for adults with dissociative seizures. DESIGN: This was a pragmatic, multicentre, parallel-arm, mixed-methods randomised controlled trial. SETTING: This took place in 27 UK-based neurology/epilepsy services, 17 liaison psychiatry/neuropsychiatry services and 18 cognitive-behavioural therapy services. PARTICIPANTS: Adults with dissociative seizures in the previous 8 weeks and no epileptic seizures in the previous year and meeting other eligibility criteria were recruited to a screening phase from neurology/epilepsy services between October 2014 and February 2017. After psychiatric assessment around 3 months later, eligible and interested participants were randomised between January 2015 and May 2017. INTERVENTIONS: Standardised medical care consisted of input from neurologists and psychiatrists who were given guidance regarding diagnosis delivery and management; they provided patients with information booklets. The intervention consisted of 12 dissociative seizure-specific cognitive-behavioural therapy 1-hour sessions (plus one booster session) that were delivered by trained therapists, in addition to standardised medical care. MAIN OUTCOME MEASURES: The primary outcome was monthly seizure frequency at 12 months post randomisation. The secondary outcomes were aspects of seizure occurrence, quality of life, mood, anxiety, distress, symptoms, psychosocial functioning, clinical global change, satisfaction with treatment, quality-adjusted life-years, costs and cost-effectiveness. RESULTS: In total, 698 patients were screened and 368 were randomised (standardised medical care alone, n = 182; and cognitive-behavioural therapy plus standardised medical care, n = 186). Primary outcome data were obtained for 85% of participants. An intention-to-treat analysis with multivariate imputation by chained equations revealed no significant between-group difference in dissociative seizure frequency at 12 months [standardised medical care: median of seven dissociative seizures (interquartile range 1-35 dissociative seizures); cognitive-behavioural therapy and standardised medical care: median of four dissociative seizures (interquartile range 0-20 dissociative seizures); incidence rate ratio 0.78, 95% confidence interval 0.56 to 1.09; p = 0.144]. Of the 16 secondary outcomes analysed, nine were significantly better in the arm receiving cognitive-behavioural therapy at a p-value < 0.05, including the following at a p-value ≤ 0.001: the longest dissociative seizure-free period in months 7-12 inclusive post randomisation (incidence rate ratio 1.64, 95% confidence interval 1.22 to 2.20; p = 0.001); better psychosocial functioning (Work and Social Adjustment Scale, standardised treatment effect -0.39, 95% confidence interval -0.61 to -0.18; p < 0.001); greater self-rated and clinician-rated clinical improvement (self-rated: standardised treatment effect 0.39, 95% confidence interval 0.16 to 0.62; p = 0.001; clinician rated: standardised treatment effect 0.37, 95% confidence interval 0.17 to 0.57; p < 0.001); and satisfaction with treatment (standardised treatment effect 0.50, 95% confidence interval 0.27 to 0.73; p < 0.001). Rates of adverse events were similar across arms. Cognitive-behavioural therapy plus standardised medical care produced 0.0152 more quality-adjusted life-years (95% confidence interval -0.0106 to 0.0392 quality-adjusted life-years) than standardised medical care alone. The incremental cost-effectiveness ratio (cost per quality-adjusted life-year) for cognitive-behavioural therapy plus standardised medical care versus standardised medical care alone based on the EuroQol-5 Dimensions, five-level version, and imputed data was £120,658. In sensitivity analyses, incremental cost-effectiveness ratios ranged between £85,724 and £206,067. Qualitative and quantitative process evaluations highlighted useful study components, the importance of clinical experience in treating patients with dissociative seizures and potential benefits of our multidisciplinary care pathway. LIMITATIONS: Unlike outcome assessors, participants and clinicians were not blinded to the interventions. CONCLUSIONS: There was no significant additional benefit of dissociative seizure-specific cognitive-behavioural therapy in reducing dissociative seizure frequency, and cost-effectiveness over standardised medical care was low. However, this large, adequately powered, multicentre randomised controlled trial highlights benefits of adjunctive dissociative seizure-specific cognitive-behavioural therapy for several clinical outcomes, with no evidence of greater harm from dissociative seizure-specific cognitive-behavioural therapy. FUTURE WORK: Examination of moderators and mediators of outcome. TRIAL REGISTRATION: Current Controlled Trials ISRCTN05681227 and ClinicalTrials.gov NCT02325544. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 43. See the NIHR Journals Library website for further project information.

Dissociative seizures resemble epileptic seizures or faints, but can be distinguished from them by trained doctors. Dissociation is the medical word for a 'trance-like' or 'switching off' state. People with dissociative seizures commonly have other psychological or physical problems. Quality of life may be low. The condition accounts for about one in every six patients seen in hospitals because of seizures. We wanted to find out if people with dissociative seizures receiving standardised treatment would also benefit from a talking therapy, called cognitive­behavioural therapy, made specific to this disorder. We did a randomised controlled trial to find out if people with dissociative seizures given standardised treatment and cognitive­behavioural therapy (talking therapy) would do better than those given standardised treatment alone. Standardised treatment of dissociative seizures began with careful diagnosis from a neurologist and then further assessment and treatment from a psychiatrist. In total, 368 people with dissociative seizures participated, with half receiving standardised treatment alone and half having talking therapy plus standardised treatment. We measured seizures and psychological and physical health in both trial groups. We also investigated whether or not cognitive­behavioural therapy was good value for money. After 12 months, patients in both trial groups seemed to have fewer monthly seizures, but there was no advantage in the talking therapy group. Patients in the talking therapy group had more consecutive days without seizures, reporting less impact from them in everyday situations. Patients in the talking therapy group, and their doctors, considered improvements to be better, and patients in this group reported greater satisfaction with treatment. However, the talking therapy was expensive and not as cost-effective as hoped. Interviews with patients and study clinicians showed that they valued aspects of both treatments and of the care provided by the multidisciplinary teams. Overall, cognitive­behavioural therapy designed for dissociative seizures plus standardised treatment was not better at reducing the total numbers of seizures reported, but did produce several positive benefits for participants compared with standardised treatment alone.

What do we know about non-epileptic seizures in adults with intellectual disability: A narrative review.

Psychogenic non-epileptic seizures (PNES) superficially resemble epileptic seizures, but are not associated with abnormal electrical activity in the brain. PNES are a heterogeneous entity and while there is increasing interest in the characterisation of PNES sub-groups, little is known about individuals with PNES who have an intellectual disability (ID). ID is a lifelong condition characterised by significant limitations in cognitive, social and practical skills. ID (commonly with comorbid epilepsy) has been identified as a risk factor for developing PNES. However, people with ID are often excluded from research in PNES. This has unfortunately resulted in a lack of evidence to help inform practice and policy for this population. This narrative review synthesises the currently available evidence in terms of the epidemiology, demographic and clinical profile of adults with PNES and ID. There is a particular focus on demographics, aetiological factors, PNES characteristics, diagnosis and treatment of the condition in this population. Throughout this article, we critique the existing evidence, discuss implications for clinical practice and highlight the need for further research and enquiry. What emerges from the evidence is that, even within the sub-group of those with ID, PNES are a heterogeneous condition. Individuals with ID and PNES are likely to present with diverse and complex needs requiring multidisciplinary care. This review is aimed at the broad range of healthcare professionals who may encounter this group. We hope that it will stimulate further discussion and research initiatives.

Behaviour change techniques in personalised care planning for older people: a systematic review.

BACKGROUND: Personalised care planning (PCP) interventions have the potential to provide better outcomes for older people and are a key focus in primary care practice. Behaviour change techniques (BCTs) can maximise effectiveness of such interventions, but it is uncertain which BCTs are most appropriate in PCP for older adults. AIM: To identify BCTs used in successful PCP interventions for older people aged ≥65 years. DESIGN AND SETTING: Systematic review. METHOD: The authors searched 12 databases from date of inception to 30 September 2017. They identified randomised controlled trials (RCTs) of interventions involving participants aged ≥65 years, and contextually related to PCP. Five areas of risk of bias were assessed. The Michie et al, BCT taxonomy was used for coding. RESULTS: Twenty-three RCTs involving 6489 participants (average age 74 years) described PCP interventions targeting the general older adult population and older people with specific long-term conditions (for example, heart disease, diabetes, stroke). Just over half of the studies were deemed to be at a low risk of bias. Eleven 'promising' BCTs were identified in five trials reporting significant improvements in quality of life (QoL). Six BCTs were reported in all five of these trials: 'goal setting', 'action planning', 'problem solving', 'social support', 'instructions on how to perform a behaviour', and 'information on health consequences'. Modes of delivery varied. CONCLUSION: Future PCP interventions to improve QoL for people aged ≥65 years may benefit from focusing on six specific BCTs. Better reporting of BCTs would enhance future design and implementation of such interventions.

Adults' experiences of living with pulmonary hypertension: a thematic synthesis of qualitative studies.

OBJECTIVES: Pulmonary hypertension is a life-shortening disease that has a considerable impact on quality of life. Improving our understanding of how individuals are affected and cope with the disease will help to improve services and outcomes. This review synthesises the published qualitative research that has listened to adults discuss their experiences of living with the disease. DESIGN: A comprehensive systematic search of four databases was conducted in May 2020: Web of Science, PubMed, PsycINFO and Cochrane Library. Suitable studies were evaluated using the Critical Appraisal Skills programme. Findings from the studies were extracted and subjected to a thematic synthesis. RESULTS: Nineteen articles were identified reflecting the experiences of over 1900 individuals impacted by pulmonary hypertension from Europe, North and South America and Asia. Ten studies did not report participant's WHO functional class of pulmonary hypertension, which resulted in comparing experiences between different severity difficult. All studies met the majority of the quality assessment items. Six descriptive themes emerged discussing participant's experiences of diagnosis, treatment, prognosis, healthcare professionals, impact and coping with pulmonary hypertension. Four higher order analytical themes were developed from the descriptive themes, reflecting: (i) uncertainties and anxiety that participants encountered related to pulmonary hypertension; (ii) lack of recognition of the impact of the condition; (iii) frustration at the paucity of awareness of pulmonary hypertension in society and healthcare settings and (iv) participant's accounts of transitioning through different stages of living with the disease. CONCLUSIONS: These findings form the first synthesis of experiences of life in individuals impacted by pulmonary hypertension and illustrate the multifaceted impact of the condition. The voices of numerous groups are missing from the literature highlighting the need for additional research. The results have implications for clinical practice emphasising the role of educational and psychological therapies to support those with the disease.

Experiences of depression in older adults from non-white and ethnic minority groups: A thematic synthesis of qualitative studies.

OBJECTIVES: Older adults from black, Asian and minority ethnic communities, sometimes referred to as BAME, are at an increased risk of experiencing depression and yet are underrepresented in healthcare services. Qualitative research could help to provide insight into how the condition is experienced and managed by these groups. The current review is a thematic synthesis of qualitative studies examining lived experience of depression in older adults from BAME groups. METHODS: A systematic search of five databases was conducted. The methodology of articles was evaluated and findings synthesised. RESULTS: Twelve articles were identified capturing the experiences of 210 older adults across three continents: North America, South America and Asia. Studies met the majority or all of the quality appraisal criteria. Three themes emerged from the analysis: (i) How depression is understood in minority groups; demonstrating while older adults were familiar with the term depression, their understanding of the condition was limited; (ii) The socio-cultural norms of minority groups for managing depression; suggesting experiences of depression are typically kept hidden and managed in secret; (iii) How minority groups experience Western treatments for depression; reporting there are a number of barriers to seeking treatment, however, those who have received care valued the opportunity to share their difficulties. CONCLUSIONS: While there is growing interest in this area, the evidence-base and research methodologies utilised to capture and explore experiences remains limited. The findings of this review have implications for informing the diagnosis, management and treatment of depression in older adults from BAME communities.

Neurologists' experiences of participating in the CODES study-A multicentre randomised controlled trial comparing cognitive behavioural therapy vs standardised medical care for dissociative seizures.

PURPOSE: We investigated neurologists' experience of participating in the large CODES trial involving around 900 adults with dissociative seizures which subsequently evaluated the effectiveness of tailored cognitive behavioural therapy (CBT) plus standardised medical care versus standardised medical care alone in 368 patients with dissociative seizures. METHOD: We asked all neurologists referring patients with dissociative seizures to the CODES study to complete a 43-item online survey. This examined neurologists' (i) demographics, (ii) knowledge of dissociative seizures before and after their involvement in the CODES trial, (iii) clinical practice before, during and since their involvement, and (iv) their experience of the CODES trial. RESULTS: Forty-three (51%) neurologists completed the questionnaire. Only about half of neurologists could make referrals to psychological intervention specific for dissociative seizures before and after the trial. One-third of doctors reported having changed their referral practice following their involvement. The majority (>69%) agreed that patient satisfaction with different aspects of the trial was very high, and 83.7% thought that it was easy to recruit patients for the study. Over 90% agreed they would like the treatment pathway to continue. Respondents found different elements of the trial useful, in particular, the patient factsheet booklet (98%), diagnosis communication advice (93%) and the CBT package (93%). CONCLUSIONS: Neurologists participating in CODES generally found it easy to recruit patients and perceived patient satisfaction as very high. However, 46.5% of neurologists could not offer psychotherapy once the trial had finished, suggesting that problems with lack of access to psychological treatment for dissociative seizures persist.

Coping with stress: A pilot study of a self-help stress management intervention for patients with epileptic or psychogenic nonepileptic seizures.

PURPOSE: Many patients with epilepsy or psychogenic nonepileptic seizures (PNES) experience high levels of stress. Although psychological interventions have been developed for seizure disorders, few patients can currently access them. We aimed to assess the acceptability and feasibility of a self-help intervention targeting stress in patients with seizures, and to provide preliminary evidence for its effectiveness. METHOD: Patients were recruited from outpatient neurology clinics and randomized to an immediate intervention group (n = 39), who received the intervention at baseline, or a delayed intervention group (n = 43), who received the intervention one-month postbaseline. Participants completed self-report questionnaires measuring stress (Smith Stress Symptom Inventory [SSSI]), anxiety (Generalized Anxiety Disorder 7-item Scale [GAD-7]), depression (Neurological Disorders Depression Inventory for Epilepsy [NDDI-E]), quality of life (European Quality of Life - 5 Dimensions [EQ-5D]), and seizure severity and frequency (Liverpool Seizure Severity Scale [LSSS-3]) at baseline, and at one- and two-month follow-up. Participants also provided telephone feedback. The intervention consisted of a self-help stress management workbook based on an integrative stress model framework. RESULTS: Although the rate of participants failing to return follow-up information at two months was approximately 50%, those who completed the trial found the intervention acceptable; with the majority rating it as helpful (63.6%) and that they would recommend it to others with seizures (88.1%). A significant reduction in self-reported stress (P = .01) with a medium effect size (dz = 0.51) was observed one-month postintervention. There were no significant changes in any other measures. CONCLUSION: The intervention was perceived to be acceptable, safe, and helpful by participants. It could be a useful complementary treatment option for reducing stress experienced by patients living with seizure disorders. Further evaluation in a larger trial is warranted.

Narrative analysis of written accounts about living with epileptic or psychogenic nonepileptic seizures.

PURPOSE: This study is based on a narrative analysis of individuals' written accounts of living with epilepsy (n = 29) or psychogenic non-epileptic seizures (n = 20, PNES). Narrative analysis looks at both the content and structure of the personal account. We used a form of narrative analysis that allowed us to identify common story lines, otherwise known as narrative typologies, potentially characteristic of these patient groups. Different narrative typologies were described and compared between writers with the two conditions. METHODS: As part of a therapeutic writing intervention for individuals living with a seizure disorder, participants were asked to write for at least 20 min about their very deepest thoughts and feelings about their condition. RESULTS: Five narrative typologies emerged: 1. 'Losses from Illness' - stories were dominated by events individuals could no longer do, authors appeared more disabled reporting greater frequency of seizures and lower health-related quality of life. 2.'Feeling Lost' - participants appeared to be in search of something and expressed uncertainty. 3.'Tackling Adversity' - individuals strove to not let their condition stop them from living their life. 4.'Overcoming Challenges' - stories reflected that the condition must be battled and fought with. 5.'A Normal Life' - individuals had demonstrated that they are managing to live with their condition. CONCLUSIONS: While the 'Tackling Adversity' typology was preferentially used by writers with epilepsy, the 'Feeling Lost' typology was chosen more commonly by those with PNES. People with epilepsy narrate their disorder differently from those with PNES, suggesting that they have different life and illness experiences.

A pilot randomised controlled trial of a home-based writing intervention for individuals with seizures.

OBJECTIVE: We investigated the feasibility, acceptability and preliminary effectiveness of a writing intervention for individuals with epilepsy or psychogenic nonepileptic seizures. METHODS: Individuals were randomised to write about potentially 'therapeutic' topics (n = 43) or about their daily events (n = 25). Participants were asked to write on four separate occasions for at least 20 min. Repeated-measures analysis of variance was used to investigate change in measures of health-related quality of life (NEWQoL-6D), depression (NDDI-E), anxiety (GAD-7) and illness perception (B-IPQ) from baseline to one and three-month follow-ups. Qualitative and quantitative data taken from a Writing Task Questionnaire was analysed between the two conditions. RESULTS: Recruitment was acceptable with 52% of those randomised completing the full writing intervention. In both conditions, participants wrote for longer than 20 min suggesting those who completed the study engaged well with the procedure. Greater benefits were observed in the 'therapeutic' condition (p < 0.05), which was associated with an improvement in health-related quality of life at one-month follow-up (p = 0.02). No differences were found in the other measures. CONCLUSIONS: A writing intervention is acceptable in this population. Self-reported benefits were modest, suggesting therapeutic writing may be more suitable as a supplement to other therapies rather than a stand-alone therapeutic intervention.