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Growing evidence points to a spectrum of non-motor symptoms, including cognitive difficulties that have a greater impact on functional outcomes and quality of life than motor symptoms in cervical dystonia (CD). Some cognitive impairments have been reported; however, findings are inconsistent, and described across mixed groups of dystonia. The current review aimed to examine the evidence for cognitive impairments in CD. MEDLINE, EMBASE, PsychINFO and Web of Science databases were searched. Studies were included if they met the following criteria (i) cross-sectional or longitudinal studies of adults with CD, (ii) where the results of standardised measures of cognitive or neuropsychological function in any form were assessed and reported, (iii) results compared to a control group or normative data, and (iv) were published in English. Results are presented in a narrative synthesis. Twenty studies were included. Subtle difficulties with general intellectual functioning, processing speed, verbal memory, visual memory, visuospatial function, executive function, and social cognition were identified while language, and attention and working memory appear to be relatively spared. Several methodological limitations were identified that should be considered when interpreting the evidence to describe a specific profile of cognitive impairment in CD. Clinical and research implications are discussed.
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Torcicolo , Adulto , Humanos , Qualidade de Vida , Estudos Transversais , Cognição , Memória de Curto PrazoRESUMO
PURPOSE: To use a qualitative research approach to explore adults' experience of living with non-epileptic attack disorder. OBJECTIVE: The objective was to explore the experience of adults (18 years+) with a confirmed diagnosis of non-epileptic attack disorder (NEAD) across the trajectory of the disorder. The topics investigated included the onset of symptoms, the experience of non-epileptic attacks, the diagnostic process and living with NEAD. METHOD: Twelve people diagnosed with NEAD who attended a tertiary hospital neurology department took part in semi-structured interviews. The data generated were analysed using reflexive thematic analysis. RESULTS: Eleven women and one man with median age of 25 years took part. Three themes were developed: mind-body (dis)connect, a stigmatised diagnosis and a role for containment. Adults spoke about their experience of nonepileptic attacks, the diagnostic and management process and the impact of both nonepileptic attacks and the NEAD diagnosis on their lives. CONCLUSIONS: Adults' experience's within the healthcare system across the trajectory of NEAD influenced their own understanding and trust in their NEAD experience, how they shared this with others in their social and work lives and how they managed their NEAD symptoms on a daily basis. The research suggests the need for a consistent, timely implementation of a rule-in diagnostic approach and multi-disciplinary management of NEAD. It is recommended that lessons be taken from theoretical models including the common-sense model and a modified version of the reattribution model to support the de-stigmatisation of this diagnosis to inform psychoeducation and professionally facilitated peer-support groups.
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Convulsões , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Pesquisa QualitativaRESUMO
BACKGROUND: Individuals with idiopathic adult-onset isolated cervical dystonia (CD) may have cognitive difficulties and increased mood challenges. Social cognition and executive functioning may be particularly affected. OBJECTIVE: To explore social cognition and executive functioning performance in individuals with CD, using the Cambridge Neuropsychological Test Automated Battery (CANTAB), as previous research has used traditional, nondigital neuropsychological assessments. We sought to investigate the relationships between social cognition, executive functioning, mood, and disability in individuals with CD. METHODS: We recruited 37 individuals with CD, including 26 women with an age range of 33 to 69 years (M = 56.64, SD = 8.31) from a dystonia clinic in a hospital neurology department. The individuals completed selected tasks from the CANTAB measuring social cognition and executive functioning. We compared the individuals' performance with CANTAB normative data. Depression, anxiety, disease severity, and disability were measured. RESULTS: The individuals with CD had significantly lower scores than the CANTAB normative data in both social cognition and executive functioning tasks, with the largest differences evident in problem-solving, attention, and positive emotion bias tasks. Poorer emotion recognition was associated with increased difficulties in problem-solving tasks. The individuals demonstrated a bias toward identifying happiness in facial affect, which was related to a poorer recognition of emotions. Cognitive performance was not related to CD severity or disability or to current mood symptoms. CONCLUSION: Difficulties with both social cognition and executive functioning were identified in the individuals with CD, and are likely important targets for clinical interventions.
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ABSTRACTPost-Traumatic Growth (PTG) is a form of positive psychological change that occurs for some individuals following traumatic experiences. High levels of PTG have been reported among survivors of acquired brain injury (ABI). Yet it remains unclear why some survivors of ABI develop PTG and others do not. The present study investigated early and late factors that are associated with long-term PTG in people with moderate to severe ABIs. Participants (n = 32, Mage = 50.59, SD = 12.28) completed self-report outcome measures at two time-points seven years apart (one-year and eight-years post-ABI). Outcome measures assessed emotional distress, coping, quality of life and ongoing symptoms of brain injury, as well as PTG at the later timepoint. Multiple regression analyses indicated that one-year post-ABI, fewer symptoms of depression, more symptoms of anxiety, and use of adaptive coping strategies accounted for a significant amount of variance in later PTG. At eight years post-ABI, fewer symptoms of depression, fewer ongoing symptoms of brain injury, better psychological quality of life and use of adaptive coping strategies explained a substantial amount of variance in PTG. For individuals with ABIs, PTG may be promoted by implementing long-term neuropsychological support which aims to facilitate use of adaptive coping strategies, supports psychological wellbeing and allows individuals to find meaning post-ABI.
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Lesões Encefálicas , Crescimento Psicológico Pós-Traumático , Humanos , Pessoa de Meia-Idade , Adaptação Psicológica , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Lesões Encefálicas/psicologiaRESUMO
Cervical dystonia (CD) is a movement disorder which causes sustained muscle contractions in the neck leading to abnormal postures and repetitive movements. As it is a highly visible condition, people with CD can experience stigma, which may lead to unhelpful coping strategies and increased psychological distress. This study investigated whether adaptive and maladaptive coping strategies mediate the relationship between stigma and psychological outcomes in people with CD. A total of 114 adults with CD completed measures of stigma, coping, health-related quality of life (HRQOL), psychological distress (depression, anxiety, stress), and psychological wellbeing at one time point. Participants' levels of distress were high, compared to the general population. Correlational analyses showed increased stigma and maladaptive coping (e.g. substance use, behavioural disengagement) were both significantly related to increased distress, lower wellbeing and lower HRQOL, whereas higher adaptive coping (e.g. acceptance, humour) was only related to higher wellbeing. In a parallel mediation model, maladaptive coping strategies mediated the relationship between stigma and distress, HRQOL and wellbeing, but adaptive coping strategies did not. These findings suggest that maladaptive coping may play an important role in explaining the relationship between stigma and some aspects of distress and wellbeing in CD. Interventions which focus on reducing different aspects of maladaptive coping may be helpful to improve wellbeing as well as reducing stigma.
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Adaptação Psicológica , Angústia Psicológica , Qualidade de Vida , Estigma Social , Torcicolo , Humanos , Masculino , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Adulto , Torcicolo/psicologia , Torcicolo/fisiopatologia , Idoso , Depressão/psicologia , Estresse Psicológico/psicologia , Ansiedade/psicologia , Capacidades de EnfrentamentoRESUMO
This study examined the predictive ability of the Common-Sense Model to explain psychological outcomes in cervical dystonia, a movement disorder that affects the muscles of the head and neck. Illness Perceptions Questionnaire-Revised, brief COPE, Hospital Anxiety and Depression Scale, Cervical Dystonia Impact Profile and the Post-Traumatic Growth Inventory were completed by 118 people with cervical dystonia. Correlations and hierarchical multiple regression models were conducted. Illness perceptions and coping strategies explained 59% of variance in anxiety, 61% of variance in depression and health-related quality of life and 19% of variance in post-traumatic growth. Illness perceptions and coping strategies are significant factors to consider in terms of psychological adjustment and outcomes in cervical dystonia. Psychological interventions targeting illness perceptions and coping strategies may be beneficial in improving psychological outcomes for people with cervical dystonia.
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Qualidade de Vida , Torcicolo , Humanos , Qualidade de Vida/psicologia , Estresse Psicológico/psicologia , Adaptação Psicológica , Ansiedade/psicologia , Depressão/psicologia , Inquéritos e QuestionáriosRESUMO
Background: A recent survey of 109 healthcare professionals explored how UK healthcare professionals typically assess and treat multiple sclerosis (MS)-related cognitive impairment. Little is currently known about what constitutes usual care for cognitive impairment and psychosocial care for people with MS in Ireland. Aim: The aim of the current research was to survey healthcare professionals (HCPs) who work with people with MS, to understand current assessment and management of cognition and psychosocial care in people with MS in the Republic of Ireland. Methods: A cross-sectional survey design was used. Data were collected online through Microsoft forms and through postal responses. The original UK questionnaire was adapted, piloted, and distributed to Irish HCPs. Participants were qualified HCPs who work clinically with people with MS in the Republic of Ireland. Results: Ninety-eight HCPs completed the survey. Only 34% of those surveyed reported routine screening of cognition for people with MS within their services; approximately, 36% HCPs reported that they did not provide information or services in relation to cognition to people with MS and 39% reported not referring elsewhere when cognitive difficulties were suspected. Out of the 98 HCPs, 47% reported assessing mood difficulties as part of their services, with 14% unsure. In total, 70% of participants reported onward referral took place if mood difficulties were identified. The Montreal Cognitive Assessment was the most commonly administrated cognitive assessment. Cognitive intervention choices were found to be guided by clinical judgement in 75.5% of cases. Discussion. Despite the high importance placed on cognitive and psychosocial care, there is very little consistency in treatment and assessment across services for people with MS in Ireland.
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Esclerose Múltipla , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Estudos Transversais , Irlanda/epidemiologia , Inquéritos e Questionários , CogniçãoRESUMO
Trauma can disrupt an individual's core beliefs about themselves, others, and the world. Posttraumatic growth (PTG) is thought to be the outcome of a reconstruction process involving ruminative processing. This meta-analysis examined the strength of the associations between event-related intrusive and deliberate rumination and PTG. The moderating effects of variables including age, time since trauma exposure, and trauma type were examined. Eight databases were searched for English-language, peer reviewed studies examining the associations between PTG and types of event-related rumination in adults. Effect sizes (Pearson's r) were extracted and analyzed, and study quality was assessed using the Study Quality Assessment Tool for Observational and Cohort studies. In total, 46 studies were included based on the inclusion and exclusion criteria. A significant main effect was observed for the association between retrospectively reported deliberate rumination that occurred soon after a traumatic event and PTG, r = .45, 95% CI [.41, .49]. There was significant variability in effect sizes, and the strength of this association differed according to age. The association between intrusive rumination and PTG was not significant and varied in direction. Deliberate rumination that occurred relatively soon following trauma exposure was shown to be positively associated with PTG. The findings highlight the importance of supporting trauma survivors to engage in the deliberate cognitive processing of their experiences to encourage PTG. Longitudinal research is needed to further delineate the temporal role of event-related rumination in PTG development.
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Crescimento Psicológico Pós-Traumático , Transtornos de Estresse Pós-Traumáticos , Adulto , Humanos , Estudos Retrospectivos , Transtornos de Estresse Pós-Traumáticos/psicologia , Sobreviventes , Adaptação PsicológicaRESUMO
PRIMARY OBJECTIVE: To describe the clinical characteristics, self-reported outcomes in domains relating to activities of daily living and patterns of service engagement in the survivors of a moderate-to-severe acquired brain injury over seven years. RESEARCH DESIGN: A longitudinal research design was used. METHODS AND PROCEDURES: Thirty-two individuals who sustained a moderate-to-severe acquired brain injury completed a Sociodemographic and Support Questionnaire at one (t1) and seven years (t2) after completing a publicly funded inpatient neurorehabilitation program. MAIN OUTCOMES AND RESULTS: There were minimal changes in independent living, mobility, ability to maintain key relationships and in return to work in the interval between t1 and t2. Sixty-nine percent of participants engaged with two or more allied health professional services and 75% engaged with support services in the community over the seven years. CONCLUSIONS: There were minimal additional gains in outcomes relating to activities of daily-living and there was a high level of service need in the first decade postinjury. Young and middle-aged individuals who sustain an ABI may continue to live in the community for decades with some level of disability and may require ongoing access to services.
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Lesões Encefálicas , Reabilitação Neurológica , Atividades Cotidianas , Lesões Encefálicas/reabilitação , Seguimentos , Humanos , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo PacienteRESUMO
Objective: To explore the impact of TBI on couple relationships, from the perspective of both injured and uninjured partners in the relationship.Method: In-depth, semi-structured interviews were conducted with six uninjured women and five of their male partners living with TBI for between four and eight years who had attended a tertiary neurorehabilitation service. The principles of Interpretative Phenomenological Analysis (IPA) were used to analyze the data.Results: The three major themes emerged. Broken Bonds: "those special things just between the two of us" captures the emotional fallout from TBI on each individual and on the relationship; New Dynamics: "like oil and water" describes the effect of individual changes on relationship dynamics in general, on sexuality, conflict and family life; Moving Forward Together: "We figure it out" describes coping strategies in maintaining relationships post-TBI including hope, time, understanding TBI and positive reappraisal.Conclusions: This research provides an in-depth, phenomenological account of couples' experiences of the impact of TBI on relationships, including the perspectives of both TBI survivors and their partners. The three major themes that emerged capture the stresses that impinge on relationships post-TBI and confirms the importance of supportive clinical interventions for couples as an essential component of neurorehabilitation.
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Adaptação Psicológica , Comportamento Sexual , Emoções , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Sexualidade , SobreviventesRESUMO
OBJECTIVE: To establish a comprehensive profile of cognitive functioning in people engaged in lower limb amputation (LLA) rehabilitation. DESIGN: Cross-sectional study as part of a longitudinal prospective cohort. SETTING: A national tertiary rehabilitation hospital. PARTICIPANTS: Adult volunteer participants (N=87) referred for comprehensive rehabilitation for major LLA were sampled from 207 consecutive admissions. Participants with both vascular (n=69) and nonvascular (n=18) LLA etiologies were included. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Demographic and health information and a battery of standardized neuropsychological assessments. RESULTS: Compared to normative data, impairment was evident in overall cognitive functioning (P≤.003). Impairment was also evident in particular areas, including reasoning, psychomotor function, information processing, attention, memory, language/naming, visuospatial functions, and executive functions (all P≤.003 Holm-corrected). There were also higher frequencies of impaired functions across most aspects of functioning in this group compared with expected frequencies in normative data (P≤.003 Holm-corrected). There were no significant differences in cognitive functioning between participants of vascular and nonvascular LLA etiology. CONCLUSIONS: Findings support the need for cognitive screening at rehabilitation admission regardless of etiology. Administration of comprehensive neuropsychological assessment with a battery sensitive to vascular cognitive impairment is recommended in some cases to generate an accurate and precise understanding of relative strengths and weaknesses in cognitive functioning. Cognitive functioning is a potential intervention point for improvement of rehabilitation outcomes for those with LLA, and further research is warranted in this area.
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Amputação Cirúrgica/psicologia , Amputação Cirúrgica/reabilitação , Extremidade Inferior/cirurgia , Processos Mentais , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Cognição , Comorbidade , Estudos Transversais , Função Executiva , Feminino , Humanos , Estudos Longitudinais , Masculino , Memória , Saúde Mental , Pessoa de Meia-Idade , Testes Neuropsicológicos , Resolução de Problemas , Estudos Prospectivos , Centros de Reabilitação , Fatores Sexuais , Fatores SocioeconômicosRESUMO
Impaired awareness of errors is common following traumatic brain injury (TBI) and can be a barrier to successful rehabilitation. The objective of this study was to develop and evaluate a computer-based intervention programme aimed at improving error awareness in individuals with TBI. A further aim was to explore its effects on metacognitive awareness and variability of performance. Participants were 11 individuals with TBI and impaired error awareness who performed a sustained attention task twice-weekly for four weeks. The intervention consisted of audio-visual feedback-on-errors during the sustained attention task. Six participants received audio-visual feedback-on-error, five did not receive feedback. Emergent and metacognitive awareness were measured pre- and post-intervention. Between-groups comparisons of emergent awareness from pre- to post-intervention showed that audio-visual feedback-on-error improved emergent awareness compared to no feedback-on-error. Some changes in metacognitive awareness of executive behaviours as a result of feedback were observed. Audio-visual feedback-on-error improved emergent awareness in individuals with TBI following a four-week/eight-session intervention. This improvement was not observed in the no-feedback group. This pilot intervention is not a stand-alone treatment but it has potential to be usefully incorporated into cognitive or clinical rehabilitation programmes to improve emergent awareness.
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Atenção/fisiologia , Conscientização/fisiologia , Lesões Encefálicas Traumáticas/reabilitação , Disfunção Cognitiva/reabilitação , Função Executiva/fisiologia , Retroalimentação Psicológica/fisiologia , Metacognição/fisiologia , Desempenho Psicomotor/fisiologia , Terapia Assistida por Computador/métodos , Adulto , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/fisiopatologia , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/fisiopatologia , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Projetos Piloto , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVES: Childhood stroke is a rare but devastating occurrence. Its infrequency has meant that a clear body of knowledge has not been fully established regarding its impact on neuropsychological outcome. Our aims were (i) to critically review the recent literature on neuropsychological outcome following childhood stroke; (ii) to investigate the factors related to neuropsychological outcome following childhood stroke. METHODS: Literature searches were conducted and revealed 39 relevant papers from the period 1999-2015. RESULTS: The review found that a significant number of children experience difficulties in a wide range of neuropsychological domains, with particular vulnerabilities noted in attention, speed of information processing and executive functioning. There were inconsistent findings regarding the correlates of neuropsychological outcome, which is likely due to methodological limitations of the studies. CONCLUSIONS: This review strongly indicates that childhood stroke can affect a myriad of neuropsychological domains, with attention, speed of processing and executive function particularly vulnerable. Methodological issues, particularly around heterogeneous samples and measurement difficulties, limit the conclusions that can be drawn regarding the predictors of outcome.
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Transtornos Cognitivos/etiologia , Deficiências do Desenvolvimento/etiologia , Testes Neuropsicológicos , Acidente Vascular Cerebral/complicações , Criança , Transtornos Cognitivos/diagnóstico , Função Executiva , HumanosRESUMO
OBJECTIVE: This systematic review and meta-ethnography aimed to examine how children, adults and families cope with Tourette's syndrome (TS). METHODS: A systematic search of four databases was completed in October 2022. Sixteen papers met the inclusion criteria and were synthesised using Noblit and Hare's (1988) meta-ethnographic approach. RESULTS: Three themes were constructed: redefining the self and social identity, controlling the visible presentation of Tourette's syndrome, and challenging the narrative. CONCLUSION: Findings indicate that coping involves the need to integrate TS with identity, to exert control over tics and to challenge the misrepresentations of TS in wider society. A supportive environment provided by parents and friends enables individuals to feel proud that they can control their tics, and this allows for the positive integration of TS into identity. Raising awareness at a societal level through educational campaigns is important when aiming to improve coping with a stigmatised condition. Further research is recommended, for example, to understand how common co-occurring conditions, such as attention deficit hyperactivity disorder, impact coping.
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Cognitive difficulties are reported in up to 60% of people with MS (pwMS). There is often a discrepancy between self-reported cognitive difficulties and performance on cognitive assessments. Some of this discrepancy can be explained by depression and fatigue. Pre-MS cognitive abilities may be another important variable in explaining differences between self-reported and assessed cognitive abilities. PwMS with high estimated premorbid cognitive functioning (ePCF) may notice cognitive difficulties in daily life whilst performing within the average range on cognitive assessments. We hypothesised that, taking into account depression and fatigue, ePCF would predict (1) differences between self-reported and assessed cognitive abilities and (2) performance on cognitive assessments. We explored whether ePCF predicted (3) self-reported cognitive difficulties. Eighty-seven pwMS completed the Test of Premorbid Functioning (TOPF), the Brief International Cognitive Assessment for MS (BICAMS), self-report measures of cognitive difficulty (MS Neuropsychological Questionnaire; MSNQ), fatigue (MS Fatigue Impact Scale; MFIS) and depression (Hospital Anxiety and Depression Scale; HADS). Results revealed that, taking into account covariates, ePCF predicted (1) differences between self-reported and assessed cognitive abilities, p < .001 (model explained 29.35% of variance), and (2) performance on cognitive assessments, p < .001 (model explained 46.00% of variance), but not (3) self-reported cognitive difficulties, p = .545 (model explained 35.10% of variance). These results provide new and unique insights into predictors of the frequently observed discrepancy between self-reported and assessed cognitive abilities for pwMS. These findings have important implications for clinical practice, including the importance of exploring premorbid factors in self-reported experience of cognitive difficulties.
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Disfunção Cognitiva , Esclerose Múltipla , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/psicologia , Autorrelato , Testes Neuropsicológicos , Cognição , Fadiga/diagnóstico , Fadiga/etiologia , Fadiga/psicologia , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/psicologiaRESUMO
BACKGROUND: Autologous haematopoietic stem cell transplant (HSCT) is considered an effective treatment for highly active multiple sclerosis (MS). To date, most research has focused primarily on disease outcome measures, despite the significant impact of neuropsychological symptoms on MS patients' quality of life. The current systematic review aimed to examine whether HSCT for MS impacts neuropsychological outcome measures such as cognition, fatigue, mood, and quality of life. METHODS: The review was registered with the International Prospective Register of Systematic Reviews (PROSPERO, ID: CRD42023474214). Systematic searches were carried out in six databases (PsycINFO, PubMed, Embase, Scopus, CINAHL and Web of Science) based on the following inclusion criteria: (i) published in peer-reviewed journals in English; (ii) longitudinal studies of adults with MS (iii) at least one neuropsychological outcome was assessed pre- and post-HSCT using standardised measures. Risk of bias was assessed using the National Heart, Lung and Blood Institute (NHLBI) quality assessment tools. A narrative synthesis was used to present results. RESULTS: Eleven studies were included in the review. Long-term improvements in quality of life post-HSCT were identified. In terms of cognition and fatigue, the evidence was mixed, with some post-HSCT improvements identified. Decline in cognitive performance in the short-term post-HSCT was observed. No changes in mood were identified post-HSCT. Arguments for interpreting these results with caution are presented based on risk of bias. Arguments for interpreting these results with caution are presented based on risk of bias. Limitations of the evidence are discussed, such confounding variables and lack of statistical power. CONCLUSION: The evidence base for the impact of HSCT for MS on neuropsychological outcomes is limited. Further research is required to progress understanding to facilitate clinician and patient understanding of HSCT treatment for MS.
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Transplante de Células-Tronco Hematopoéticas , Esclerose Múltipla , Humanos , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Qualidade de Vida , Fadiga/etiologia , Avaliação de Resultados em Cuidados de SaúdeRESUMO
BACKGROUND: Functional neurological disorder (FND) is a common and often disabling condition. Limited access to services for FND poses challenges both for patients and their health care providers. This survey explored the attitudes, experiences, support needs and training needs of health care professionals (HCPs) who provide care to individuals with FND in Ireland. METHODS: A broad range of HCPs working with patients with FND in Ireland partook in an anonymous online 12-item survey. Participants were recruited via professional bodies and snowball convenience sampling utilising social media and email invitation. Descriptive and inferential statistics were employed to analyze data. RESULTS: A total of 314 HCPs working in Ireland completed the survey. 80% were female and over half worked in their current role for more than 10 years. 75% of the sample encountered three or less individuals with FND per month. Identified service-related challenges to effective patient care included insufficient clinic time, lack of confidence explaining the diagnosis, and the need for greater access to specialist support. Data revealed persisting negative attitudes toward FND patients among a proportion of respondents. The majority of respondents did not feel they received adequate education on FND, with the exception of neurologists, of whom 65% felt adequately trained. The majority of respondents (85%) also felt that people with FND did not have access to appropriate FND services in Ireland. CONCLUSION: This study indicates that there is a significant need to improve FND education among HCPs in Ireland, in addition to developing appropriately resourced, integrated, multidisciplinary care pathways for the FND patient group.
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Transtorno Conversivo , Humanos , Feminino , Masculino , Pessoal de Saúde , Atitude do Pessoal de Saúde , Inquéritos e Questionários , Conhecimentos, Atitudes e Prática em SaúdeRESUMO
BACKGROUND: People with MS (pwMS) commonly experience a range of hidden symptoms, including cognitive impairment, anxiety and depression, fatigue, pain, and sensory difficulties. These "invisible" symptoms can significantly impact wellbeing, relationships, employment and life goals. We developed a novel bespoke online group neuropsychological intervention combining psychoeducation and cognitive rehabilitation with an Acceptance and Commitment Therapy (ACT)-informed approach for pwMS in an acute tertiary hospital. This 'Neuropsychological Intervention for Managing Invisible Symptoms' in MS (NIMIS-MS) consisted of 6 sessions, each with a psychoeducation and ACT component. The content included psychoeducation around managing cognitive difficulties, fatigue, pain, sleep and other unpleasant sensations in MS with the general approach of understanding, monitoring, and recognising patterns and potential triggers. Specific cognitive rehabilitation and fatigue management strategies were introduced. The ACT-informed component focussed on three core ACT areas of the 'Triflex' of psychological flexibility (Harris, 2019): Being Present, Opening Up, and Doing What Matters. METHODS: 118 pwMS attended the NIMIS-MS group intervention which was delivered 14 times in six-week blocks over an 18-month period. To evaluate the effectiveness and acceptability, participants completed measures of depression and anxiety (HADS), functional impairment (WSAS), Values- Progress (VQ) and Values- Obstruction (VQ), and Acceptance of MS (MSAS) pre and post NIMIs-MS group intervention. Qualitative feedback was obtained during focus groups after the final session and via online feedback questionnaires RESULTS: Pre-post analysis showed that symptoms of depression and anxiety were significantly lower and acceptance of MS was significantly higher following completion of the NIMIS-MS group. Qualitative feedback showed that participants reported that they felt more equipped to manage the "invisible" symptoms of MS following completion of the group, and benefited from using ACT-based strategies and techniques. Participants highly valued the peer support that evolved during the NIMIS-MS groups. The online format was considered more accessible than in-person groups, due to less concerns of travel time, cost, fatigue, and comfort and infection. CONCLUSION: Evaluation suggests that our novel NIMIS-MS groups is an acceptable, beneficial and feasible approach for providing neuropsychological interventions to individuals with MS.
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Esclerose Múltipla , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Projetos Piloto , Adulto , Esclerose Múltipla/complicações , Esclerose Múltipla/reabilitação , Esclerose Múltipla/psicologia , Esclerose Múltipla/terapia , Terapia de Aceitação e Compromisso/métodos , Psicoterapia de Grupo/métodos , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/reabilitação , Disfunção Cognitiva/terapia , Terapia Cognitivo-Comportamental/métodos , Educação de Pacientes como Assunto , Aceitação pelo Paciente de Cuidados de Saúde , Depressão/terapia , Depressão/etiologiaRESUMO
BACKGROUND: Cognitive reserve (CR) describes an individual's ability to adapt cognitive processes in response to brain atrophy, and has been reported to explain some of the discrepancy between brain atrophy and cognitive functioning outcomes in multiple sclerosis (MS). CR in MS is typically investigated by assessing an individual's pre- and/or post-diagnosis enrichment, which includes premorbid intellectual abilities, educational level, occupational attainment, and engagement in cognitively enriching leisure activities. Common MS symptoms (e.g., physical disability, fatigue, depression, anxiety) may impact an individual's ability to engage in various CR-enhancing activities post-diagnosis. It is unknown to what extent these MS symptoms have been taken into account in MS research on CR. As such, we identified whether studies assessed CR using measures of premorbid or continuous (including post-diagnosis) enrichment. For studies investigating continuous enrichment, we identified whether studies accounted for MS-impact, which MS symptoms were accounted for, and how, and whether studies acknowledged MS symptoms as potential CR-confounds. METHODS: Three electronic databases (PsycINFO, PubMed, Scopus) were searched. Eligible studies investigated CR proxies (e.g., estimated premorbid intellectual abilities, vocabulary knowledge, educational level, occupational attainment, cognitively enriching leisure activities, or a combination thereof) in relation to cognitive, brain atrophy or connectivity, or daily functioning outcomes in adult participants with MS. We extracted data on methods and measures used, including any MS symptoms taken into account. Objectives were addressed using frequency analyses and narrative synthesis. RESULTS: 115 studies were included in this review. 47.8% of all studies investigated continuous enrichment. Approximately half of the studies investigating continuous enrichment accounted for potential MS-impact in their analyses, with only 31.0% clearly identifying that they treated MS symptoms as potential confounds for CR-enhancement. A narrative synthesis of studies which investigated CR with and without controlling statistically for MS-impact indicated that accounting for MS symptoms may impact findings concerning the protective nature of CR. CONCLUSION: Fewer than half of the studies investigating CR proxies in MS involved continuous enrichment. Just over half of these studies accounted for potential MS-impact in their analyses. To achieve a more complete and accurate understanding of CR in MS, future research should investigate both pre-MS and continuous enrichment. In doing so, MS symptoms and their potential impact should be considered. Establishing greater consistency and rigour across CR research in MS will be crucial to produce an evidence base for the development of interventions aimed at improving quality of care and life for pwMS.
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Reserva Cognitiva , Esclerose Múltipla , Adulto , Humanos , Esclerose Múltipla/psicologia , Reserva Cognitiva/fisiologia , Encéfalo/patologia , Depressão , Ansiedade , Atrofia/patologia , Fadiga/etiologia , Fadiga/patologiaRESUMO
Introduction: Cervical dystonia (CD) presents as a motor disorder but has a number of non-motor features. Studies have demonstrated diverse changes in cognition in patients with CD. The rarity of this disorder, phenotypic heterogeneity, and, in particular, a lack of consistency in cognitive testing measures limits clear definition of cognitive changes in this disorder. The relationship between cognition, motor symptoms and quality of life has not been well defined. We undertook a comprehensive analysis of cognition in CD. Methods: Patients with adult onset idiopathic isolated CD (AOICD) who had completed a battery of cognitive assessments- general intellectual functioning, verbal and visual memory, executive functions and social cognition measures, were included. Participants were assessed for mood symptoms, motor severity and quality of life. Results: 13 patients (8 women) with AOICD were included covering 40 cognitive subtests. Mean age was 59.9 years and mean TWSTRS-2 severity was 11. Mean estimated premorbid function was in the normal range. Overall performance on most measures were within normal limits. The lowest mean z-score was observed in Florida Affect Battery (social cognition) subtests, z = -1.75 and -0.81. and in verbal recall, z = -0.82. The majority of patients (75%) scored below population mean on spatial working memory and (62%) performed below population mean on word retrieval and working memory. Conclusion: We provide detailed cognitive results across a wide range of measures. Although patients tended towards average outcomes on the majority of tests, poorer performance than expected averages were noted in measures of social cognition, word retrieval, spatial working memory and, processing speed.