The lived experience of young adults with Fetal Valproate Spectrum Disorder, and the perspective of their parents: A qualitative study.

BACKGROUND: While research has investigated the physical and neurodevelopmental consequences following prenatal exposure to valproate, our understanding of individuals with a formal diagnosis of Fetal Valproate Spectrum Disorder (FVSD), particularly in the context of adulthood, remains limited. AIM: To investigate how symptoms and challenges of FVSD present in adulthood. METHODS: 30 people took part in the study, including 13 young adults aged between 21 and 37 years, 15 mothers, and 2 fathers. In all cases, valproate had been used for the treatment of maternal epilepsy. Data were collected using semi-structured interviews and analysed using thematic analysis. RESULTS: Six broad themes were identified: 1. Health and development, 2. Employment, 3. Daily living and independence, 4. Social skills and relationships, 5. Access to services, and 6. Impact on families. Individuals with FVSD live with an array of physical, mental, and developmental challenges that extend well beyond childhood, significantly altering their life course and that of their families. Challenges in obtaining employment, achieving independent living, and navigating social and romantic relationships become increasingly significant as individuals with FVSD age. Despite their persistent need for support, services for adults with FVSD are either limited or entirely absent. Recommendations from families were provided regarding optimized support systems. CONCLUSION: This study highlights the lifelong physical, cognitive, emotional, social and behavioural symptoms associated with FVSD. Young adults and their parents desire further research regarding the condition along with improved support and health services in adulthood.

Neurodevelopmental outcomes in children and adults with Fetal Valproate Spectrum Disorder: A contribution from the ConcePTION project.

AIM: To describe the neurodevelopmental phenotype of older children and adults with a diagnosis of Fetal Valproate Spectrum Disorder (FVSD). METHODS: In this cross-sectional study, 90 caregivers were recruited and completed a series of questionnaires regarding the neurodevelopmental outcomes of 146 individuals aged 7-37 years (M = 18.1), including individuals with a formal diagnosis of FVSD (n = 99), individuals exposed to Valproate but without an FVSD diagnosis (n = 24), and individuals not exposed to Valproate (N = 23). The mean dose of valproate exposure for individuals with an FVSD diagnosis was 1470 mg/day. RESULTS: Individuals with a diagnosis of FVSD showed significantly higher levels of moderate (43.4%) and severe (14.4%) cognitive impairment than other groups (p = 0.003), high levels of required formal educational support (77.6%), and poorer academic competence than individuals not exposed to Valproate (p = 0.001). Overall psychosocial problems (p = 0.02), internalising problems (p = 0.05) and attention problems (p = 0.001), but not externalising problems, were elevated in individuals with a diagnosis of FVSD. Rates of neurodevelopmental disorders, particularly autistic spectrum disorders (62.9%) and sensory problems (80.6%) are particularly central to the FVSD phenotype. There was no evidence of a statistical dose-dependent effect, possibly due to the high mean dose of exposure having a uniformly negative impact across the sample. Individuals with FVSD had required a significant number of health and child development services. INTERPRETATION: Children and young adults with a diagnosis of FVSD are at an increased risk of a range of altered neurodevelopmental outcomes, highlighting the need for a multidisciplinary approach to clinical management across the lifespan.

A framework to aid adoption of automated rehabilitation devices into clinical practice: synthesising and Interpreting Language for Clinical Kinematics (SILCK).

The Synthesising and Interpreting Language for Clinical Kinematics (SILCK) is an informatic framework for developing software to control automated rehabilitation devices. It aids adoption of devices into rehabilitation practice, by bridging the gap between clinical practice and internal device operation. SILCK defines data entities and processes for capturing clinical observations of patients and their rehabilitation goals in formats which can be used to direct the tailoring of device parameters to the individual patient's needs.

Development of the iPAM MkII system and description of a randomized control trial with acute stroke patients.

iPAM (intelligent Pneumatic Arm Movement) is a dual robot system for providing assistive upper-limb exercise to people with arm weakness as a result of stroke. This paper highlights refinements made to the system in the development of iPAM MkII. The rationale of an on-going random control trial using the iPAM MkII is also presented.

A novel robotic system for quantifying arm kinematics and kinetics: description and evaluation in therapist-assisted passive arm movements post-stroke.

We developed a system for quantitatively measuring arm movement. Our approach provides a method to simultaneously capture upper limb kinetic and kinematic data during assisted passive arm movements. Data are analysed with respect to Cartesian and upper limb coordinate systems to obtain upper limb joint angles and torques. We undertook an evaluation of the system in participants with stroke to show the feasibility of this approach. During rehabilitation after stroke, one aspect of treatment includes the physiotherapist applying assistive forces to move the impaired arm of the patient who remains passive. There is a dearth of published data on the relationship between upper limb kinematics and the underlying forces (kinetics) in this mode of physiotherapy treatment. Such quantitative data are crucial in facilitating research into therapy practice, for example by measuring variation in practice and determining dosage. An experienced therapist prescribed passive movements tailored to the needs of 16 participants with stroke (41-81 years) with a range of anthropometric sizes and motor impairments. Our novel measurement tool recorded kinematic and kinetic data at 100 Hz for 6-11 movements per participant. The kinetic data show that the majority of movements fall within upper limits of 36.7 N in shoulder elevation, 22.4N in shoulder protraction, 4.6 Nm in shoulder abduction, 12.8 Nm in shoulder flexion, 2.4 Nm in shoulder rotation and 5.5 Nm in elbow flexion. These data show the potential of this system to better understand arm movement, in particular to objectively evaluate physical therapy treatments and support development of robotic devices to facilitate upper limb rehabilitation.

Effector force requirements to enable robotic systems to provide assisted exercise in people with upper limb impairment after stroke.

iPAM (intelligent Pneumatic Arm Movement) is a dual robotic system that aims to assist in the recovery of upper-limb movement in people with all severities of motor impairment after stroke. This paper presents effector force data gathered during the course of a pilot clinical study. It identifies the forces and workspace required to facilitate reach-retrieve exercises in a range of patients as part of rehabilitation treatments. These findings have been used in further refinements of the iPAM system.

Doctors with difficulties: why so few women?

The National Clinical Assessment Service (NCAS), an NHS organisation that assesses doctors and dentists referred to them because of perceived difficulties, has produced a report describing data arising from its first 4 years, showing that male doctors were referred to the service considerably more often than female doctors. Despite women accounting for 42% of the general practitioner medical workforce and 37% of the medical hospital and community (H&C) workforce in 2004, only 13% of GPs and 20% of H&C NCAS referrals were women. When the H&C data were split into specialties, women were under-represented proportionally in all specialties. This paper offers a review of possible reasons for these gender differences and in doing so contributes to the debates concerning problems in performance and also the costs of employing a growing proportion of women doctors. Firstly, it hypothesises that the NCAS data may be non-representative of similar agency data, but finds that in disciplinary organisations of various types around the world, men are consistently over-represented. Secondly, it suggests that perhaps men are referred to such agencies more often than women because their employers are more lenient on women. There is no evidence for this, and it requires primary research to investigate it further. Finally, it considers gender differences in the attributes, beyond technical skills, that underpin a good doctor-patient relationship and finds that, on these attributes, women usually excel over men. In addition, far fewer women are disciplined for addiction. The implications of this for education and rehabilitation are considered. It concludes that any analysis of the economic costs of employing a greater proportion of female doctors must take into account the higher costs of men's litigation, discipline and retraining.

Associated reactions after stroke: a randomized controlled trial of the effect of botulinum toxin type A.

OBJECTIVE: To measure the impact of botulinum toxin A on associated reactions in patients following stroke. DESIGN: Randomized placebo-controlled trial. PATIENTS: Forty patients with spasticity in their paretic arm (median time since stroke: 2.7 years) were randomized to botulinum toxin A (Dysport; 1000 mouse units (MU) divided between elbow, wrist and finger flexors) or placebo. METHODS: Associated reactions were measured using hand dynamometry. The effort used was measured using maximum voluntary grip in the unaffected arm. Measurements were recorded at 2 pre-treatment and 3 post-intervention times. Activities that patients felt caused associated reactions and activities that were affected by associated reactions were recorded. RESULTS: Peak associated reactions force was reduced at week 6 with botulinum toxin A compared with placebo (mean group difference 19.0 N; 95% confidence interval (CI): 7.2, 30.9; p < 0.01) and week 2 (p = 0.005), with the effect wearing off by week 12 (p = 0.09). Thirty-one patients noted associated reactions on a regular basis and 24 said that these movements interfered with daily activities. Ten of 12 patients receiving botulinum toxin A and 2 of 12 receiving placebo reported reduction in interference with daily activities (p = 0.02). CONCLUSION: Botulinum toxin A reduces associated reactions and may be a useful adjunct to other rehabilitation interventions. The impact of associated reactions on daily activities may also be reduced.

An admittance control scheme for a robotic upper- limb stroke rehabilitation system.

This paper presents a control scheme for a dual robot upper-limb stroke rehabilitation system. A model of the human arm is outlined and used to formulate an admittance controller operating in human upper-limb joint space. Initial results are provided together with a discrussion of future work.

Organisational trust: the keystone to patient safety.

Trust is an essential part of health care-not only between clinicians and patients but also between staff and management. Research shows us that trust has a beneficial impact on many aspects of working life, including job satisfaction and organisational effectiveness, and both these factors have been shown to affect the quality of patient care. In addition, trust will now be the keystone for any system developed for services to learn from untoward incidents, such as the Reporting and Learning System of the National Patient Safety Agency in the UK. This type of trust is complex and is explored in terms of what staff need from management and the potential conflicts that might be involved in developing trust in a healthcare organisation. This paper looks at the societal and emotional context of health care today and at research from other organisations which shows the factors that must be in place to establish trust. It reviews the attributes of leaders who are seen as trustworthy, and looks at how all this can be used to increase the reporting of and learning from error.

Can we select health professionals who provide safer care.

In order to improve patient safety, health services are looking to other industries' experiences and as a result are adopting a systems approach to learning from error, rather than simply focusing the blame on the individual. However, in health care the individual will remain an important contributor to safety and this paper looks at other literatures besides health to consider a number of individual characteristics and the role they might play in terms of work practices that affect patient safety. It considers the effects of a variety of personality profiles including sensation seeking, Type A, and those with high self esteem; looks at our ability to select for psychological wellbeing; and discusses the ways that psychometrics have been used in medicine to predict performance. It concludes that although rarely used, psychometrics has been shown to be useful in predicting some aspects of performance in medicine and suggests that this is an area well worth further study for the benefit of patient care. Nevertheless, we are a long way away from being able to select safer staff and should instead be developing this knowledge to enable us to recognise and address potential difficulties.

Measuring movement irregularity in the upper motor neurone syndrome using normalised average rectified jerk.

Movement irregularity is a feature of the upper motor neurone (UMN) syndrome which is difficult to measure. Average rectified jerk (ARJ) has been proposed as a measure of this movement irregularity, but ARJ depends upon the duration of movement. Since movements may be slower in UMN patients, duration dependence compromises ARJ as a measure of irregularity. A normalisation technique is proposed that generates a measure of movement irregularity which is independent of movement duration: normalised average rectified jerk (NARJ). This paper presents a validation of NARJ in the UMN syndrome. Nine control subjects, nine left hemiparetic stroke patients and nine right hemiparetic stroke patients were studied. Test movements comprised elbow extension/flexion in the horizontal plane; these were recorded with an electro-goniometer and accelerometer. The effectiveness of the normalisation technique has been demonstrated using trajectories of various durations; some of these were artificially generated from participants' trajectories, in order to preserve the movement profile. The variability of NARJ and ARJ have been compared in a sample of control subjects. NARJ has been criterion validated by correlation with expert subjective rating of irregularity in a heterogeneous set of trajectories. Construct validity has been tested by discrimination between movements of control subjects, left hemiparetic stroke patients and right hemiparetic stroke patients. When comparing trajectories of identical profile but two-fold difference in movement duration, NARJ differed only 2.6% whereas ARJ differed 706%. NARJ was less reproducible in healthy participants than ARJ: median non-parametric coefficients of variation for repeated movements were 55% and 41%, respectively. Spearman rank correlation coefficient for NARJ and expert rating was 0.92 (p<0.01). NARJ measurements on right hemiparetic patients differ significantly from those made on the control group (p<0.02); corresponding ARJ measurements do not attain statistical significance. NARJ is a valid measure of movement irregularity in the UMN syndrome.

Stress in UK intensive care unit doctors.

BACKGROUND: Doctors have long been considered at risk of occupational stress. METHODS: A postal survey of all members of the Intensive Care Society using validated instruments. RESULTS: Eight-five per cent of members returned questionnaires and 70% were eligible for the study. Twenty-nine per cent were suffering General Health Questionnaire-12 (GHQ-12) identified distress and 12% Symptom Checklist-Depression (SCL-D) defined depression. There were no significant age or sex differences between staff suffering distress or depression and those who did not. Dissatisfaction with career correlated highly with both distress and depression (P<0.01). Twenty doctors (3%) were bothered by suicidal thoughts. The most stressful aspects of work were bed allocation, being over-stretched, effect of hours of work and stress on personal/family life, and compromising standards when resources are short. Logistic regression revealed mental health problems were predicted by five stressors: 'lack of recognition of one's own contribution by others'; 'too much responsibility at times'; 'effect of stress on personal/family life'; 'keeping up to date with knowledge'; and 'making the right decision alone'. CONCLUSIONS: Nearly one in three ICU doctors appeared distressed (GHQ), and one in 10 depressed (SCL-D); this is no greater than that reported in other specialities. Perceived stressors reveal some key areas of concern for the employer and the specialty.

Leadership and the quality of care.

The importance of good leadership is becoming increasingly apparent within health care. This paper reviews evidence which shows that it has effects, not only on financial management, but on the quality of care provided. Some theories of leadership are discussed, primarily in terms of how different types of leaders might affect quality in different ways, including the effects that they might have on the stress or wellbeing of their staff which, in turn, is related to the quality of care produced. Finally, the conflicts shown in terms of leadership within the context of health care are discussed, leading to the conclusion that development programmes must be specially tailored to address the complexities of this arena.

Cultures for improving patient safety through learning: the role of teamwork.

Improvements in patient safety result primarily from organisational and individual learning. This paper discusses the learning that can take place within organisations and the cultural change necessary to encourage it. It focuses on teams and team leaders as potentially powerful forces for bringing about the management of patient safety and better quality of care.