Functional neurological disorder is a feminist issue.

Functional neurological disorder (FND) is a common and disabling disorder, often misunderstood by clinicians. Although viewed sceptically by some, FND is a diagnosis that can be made accurately, based on positive clinical signs, with clinical features that have remained stable for over 100 years. Despite some progress in the last decade, people with FND continue to suffer subtle and overt forms of discrimination by clinicians, researchers and the public. There is abundant evidence that disorders perceived as primarily affecting women are neglected in healthcare and medical research, and the course of FND mirrors this neglect. We outline the reasons why FND is a feminist issue, incorporating historical and contemporary clinical, research and social perspectives. We call for parity for FND in medical education, research and clinical service development so that people affected by FND can receive the care they need.

Self-determination and co-operation in supported mealtimes involving people with severe intellectual disabilities.

PURPOSE: People with severe intellectual disabilities are often supported during mealtimes. However, little information exists about how they and care staff co-ordinate their mealtime behaviours. METHOD: Four people with severe intellectual disabilities and 12 members of care staff participated in this research. Video data were collected from two services for people with intellectual disabilities. Approximately 30 eating or drinking interactions were filmed, totalling approximately 9.5 h of footage. This footage was analysed using conversation analysis (CA). Ethnographic notes were made. CA is a fine-grained systematic approach which allows examination of how mealtimes are achieved, looking closely at verbal and non-verbal behaviours. RESULTS: Results show how people with severe intellectual disabilities can demonstrate whether they are ready, or not, for a mouthful of food or drink despite their limited language abilities. Ways in which readiness and unreadiness were demonstrated are outlined and staff responses are also considered. CONCLUSIONS: There are wider implications for self-determination among people with severe intellectual disabilities. Examples provided suggest that people with severe intellectual disabilities can, and do, make decisions about how fast they eat and when they prefer to complete other activities. Respecting these decisions, carers better support the autonomy of individuals with severe intellectual disabilities.

People with severe intellectual disabilities often need support in eating and drinking.People with severe intellectual disabilities use a variety of verbal and non-verbal resources to show when they are ready and when they are not.Decisions made by people with severe intellectual disabilities relating to mealtimes should be acknowledged and respected.Allowing people with severe intellectual disabilities to steer mealtime activities promotes agency and self-determination.

Forms of resistance in people with severe and profound intellectual disabilities.

Government policy in the UK emphasises that people with intellectual disabilities should have the opportunity to make choices and exert control over their own lives as much as possible. The ability of a person to resist activities and offers is therefore important, particularly for people with severe and profound intellectual disabilities, who are likely to have language impairments and need to communicate their choices non-verbally. Video and ethnographic data were collected from two services for people with severe and profound intellectual disabilities. Examples of resistance by people with severe and profound intellectual disabilities and responses to that resistance by support workers were collected and examined using conversation analysis and ethnographic description. A range of non-verbal resistance behaviours are described, and the difficulty for support workers in identifying resistance when behaviour is ambiguous is discussed. The importance of understanding these behaviours as examples of decision-making is stressed.

Occupational therapy consensus recommendations for functional neurological disorder.

BACKGROUND: People with functional neurological disorder (FND) are commonly seen by occupational therapists; however, there are limited descriptions in the literature about the type of interventions that are likely to be helpful. This document aims to address this issue by providing consensus recommendations for occupational therapy assessment and intervention. METHODS: The recommendations were developed in four stages. Stage 1: an invitation was sent to occupational therapists with expertise in FND in different countries to complete two surveys exploring their opinions regarding best practice for assessment and interventions for FND. Stage 2: a face-to-face meeting of multidisciplinary clinical experts in FND discussed and debated the data from stage 1, aiming to achieve consensus on each issue. Stage 3: recommendations based on the meeting were drafted. Stage 4: successive drafts of recommendations were circulated among the multidisciplinary group until consensus was achieved. RESULTS: We recommend that occupational therapy treatment for FND is based on a biopsychosocial aetiological framework. Education, rehabilitation within functional activity and the use of taught self-management strategies are central to occupational therapy intervention for FND. Several aspects of occupational therapy for FND are distinct from therapy for other neurological conditions. Examples to illustrate the recommendations are included within this document. CONCLUSIONS: Occupational therapists have an integral role in the multidisciplinary management of people with FND. This document forms a starting point for research aiming to develop evidence-based occupational therapy interventions for people with FND.

Outcome measurement in functional neurological disorder: a systematic review and recommendations.

OBJECTIVES: We aimed to identify existing outcome measures for functional neurological disorder (FND), to inform the development of recommendations and to guide future research on FND outcomes. METHODS: A systematic review was conducted to identify existing FND-specific outcome measures and the most common measurement domains and measures in previous treatment studies. Searches of Embase, MEDLINE and PsycINFO were conducted between January 1965 and June 2019. The findings were discussed during two international meetings of the FND-Core Outcome Measures group. RESULTS: Five FND-specific measures were identified-three clinician-rated and two patient-rated-but their measurement properties have not been rigorously evaluated. No single measure was identified for use across the range of FND symptoms in adults. Across randomised controlled trials (k=40) and observational treatment studies (k=40), outcome measures most often assessed core FND symptom change. Other domains measured commonly were additional physical and psychological symptoms, life impact (ie, quality of life, disability and general functioning) and health economics/cost-utility (eg, healthcare resource use and quality-adjusted life years). CONCLUSIONS: There are few well-validated FND-specific outcome measures. Thus, at present, we recommend that existing outcome measures, known to be reliable, valid and responsive in FND or closely related populations, are used to capture key outcome domains. Increased consistency in outcome measurement will facilitate comparison of treatment effects across FND symptom types and treatment modalities. Future work needs to more rigorously validate outcome measures used in this population.

Outcome Measures for Functional Neurological Disorder: A Review of the Theoretical Complexities.

The development and selection of optimal outcome measures is increasingly recognized as a key component of evidence-based medicine, particularly the need for the development of a standardized set of measures for use in clinical trials. This process is particularly complex for functional neurological disorder (FND) for several reasons. FND can present with a wide range of symptoms that resemble the full spectrum of other neurological disorders. Additional physical (e.g., pain, fatigue) and psychological (e.g., depression, anxiety) symptoms are commonly associated with FND, which also can be highly disabling with implications for prognosis, and warrant concurrent assessment, despite an unclear etiological relationship with FND. Furthermore, several unique clinical aspects of FND make it likely that the usual prioritization of "objective" (or clinician-rated) over "subjective" (or patient-rated) measures might not be appropriate. Self-report measures may be more clinically meaningful in this patient population. Despite being a common and disabling disorder, there has been little research into outcome measures in FND, and to date trials have largely used measures designed for the assessment of other disorders. An international FND Core Outcome Measure group (FND-COM) has been established to develop a consensus battery of outcomes for FND: a "core outcome set." In this perspective article, the authors reviewed the process of outcome measure development and selection before considering the specific features of FND affecting the development of a core outcome set, as well as a research agenda to optimize outcome measurement in this complex neuropsychiatric disorder.

Ethical approval in studies raising consent issues.

This article offers practical advice on applying for ethical approval for research involving participants who may be unable to give informed consent. It briefly outlines my own experiences and offers tips on using the Integrated Research Application System website, going to a social care research ethics committee meeting and resubmitting an application.

Total artificial heart and physical therapy management.

PURPOSE: To describe the total artificial heart (TAH) device as a bridge to heart transplantation (BTT), and related physical therapy management, while comparisons to left ventricular assist devices (LVAD) are made. SUMMARY: The SynCardia CardioWest Temporary TAH System is the only TAH approved by the Food and Drug Administration (FDA), Health Canada and Consultants Europe (CE) for BTT. CardioWest implantation involves cardiectomy thus avoiding pulmonary hypertension, right heart failure, inotropic or anti-arrhythmic agents, myocardial and valve related problems. CardioWest has a fixed beat rate and cardiac output is dependent upon venous return and preload. Both TAH and LVADs are adaptive with exercise, increasing cardiac output during activities, allowing for conditioning to occur peripherally. Left ventricular assist devices have portable drivers permitting discharge home, while the CardioWest's large driver console necessitates inpatient therapy. Exercise progression, positioning, and monitoring of exercise intolerance are similar with LVAD and TAH. Ventricular fill volumes in TAH dictate cardiac output and require close attention. Cardiectomy in TAH prevents electrocardiography, telemetry, and native pulse rate monitoring. CONCLUSION: While mechanical differences exist between TAH and LVAD, physical therapists can provide evidence-based treatment for patients with TAH using previously established guidelines for patients with heart failure and mechanical circulatory support.

Cathepsin S expression: An independent prognostic factor in glioblastoma tumours--A pilot study.

Cysteine proteinases have been implicated in astrocytoma invasion. We recently demonstrated that cathepsin S (CatS) expression is up-regulated in astrocytomas and provided evidence for a potential role in astrocytoma invasion (Flannery et al., Am J Path 2003;163(1):175-82). We aimed to evaluate the significance of CatS in human astrocytoma progression and as a prognostic marker. Frozen tissue homogenates from 71 patients with astrocytomas and 3 normal brain specimens were subjected to ELISA analyses. Immunohistochemical analysis of CatS expression was performed on 126 paraffin-embedded tumour samples. Fifty-one astrocytoma cases were suitable for both frozen tissue and paraffin tissue analysis. ELISA revealed minimal expression of CatS in normal brain homogenates. CatS expression was increased in grade IV tumours whereas astrocytoma grades I-III exhibited lower values. Immunohistochemical analysis revealed a similar pattern of expression. Moreover, high-CatS immunohistochemical scores in glioblastomas were associated with significantly shorter survival (10 vs. 5 months, p = 0.014). With forced inclusion of patient age, radiation dose and Karnofsky score in the Cox multivariate model, CatS score was found to be an independent predictor of survival. CatS expression in astrocytomas is associated with tumour progression and poor outcome in glioblastomas. CatS may serve as a useful prognostic indicator and potential target for anti-invasive therapy.