Christopher D. Ward

Goal-setting in rehabilitation: report of a workshop to explore professionals' perceptions of goal-setting

Objective: To explore the views of therapists, nurses and doctors working in a variety of rehabilitation settings on the goal-setting process. Methods: Sixteen rehabilitation staff from three different settings attended a goal-setting workshop in which the difficulties associated with goal-setting were described with their potential solutions. Results: Five difficulties with goal-setting were identified. (1) Formal goal-setting was felt to be an activity unusual for many of the patients although intrinsic to the activity of many professional groups. (2) Goal-setting is often insensitive to peoples roles in the community. (3) Goal-setting in the hospital environment does not transfer easily to the community. (4) External factors (e.g. staff turnover) over which staff felt they had little control were important in the success of a goal-setting programme. (5) Goals tend to be formulated and owned by the team, rather than the patient. Conclusions: Goal-setting is a very satisfactory activity for the team but to be as successful for the patient their needs must be acknowledged. People with mild disability and a short inpatient stay have different needs to those with acute onset severe permanent disability and those with chronic or progressive disability admitted from the community. Comparison of both process and outcome effects of different types of goal-setting is an area for future study.

Measuring autonomy in disabled people: validation of a new scale in a UK population

Objective: To evaluate the validity and reliability of an English version of the Impact on Participation and Autonomy Questionnaire (IPA). The original Dutch IPA has been shown to load onto five factors. Design: A validation study. Setting: Outpatients clinics and people’s homes. Subjects: Two hundred and thirteen people with multiple sclerosis, rheumatoid arthritis, spinal cord injury, and general practice attendees, stratified by level of disability (median age 54, 42% male, 58% female). Inclusion criteria: English as first language, aged 18-75, Mental Status Questionnaire score >6. Interventions: Self- and interviewer-administered outcome measures. Main measures: IPA, including one new item (66 participants completed the IPA on a second occasion). Other measures: Short Form-36 Health Survey (SF-36), London Handicap Scale, three domains of the Functional Limitations Profile (FLP): household management, social integration, emotion. Results: Confirmatory factor analysis confirmed the construct validity of the IPA (Normal Fit Index=0.98, Comparative Fit Index=0.99), indicating a good fit to the model. Convergent and discriminant validity were confirmed by the predicted associations, or lack of, with the exception of a poor association between the ‘social life/relationships’ IPA subscale and FLP-emotion. Internal reliability of the IPA was confirmed (Cronbach alphas >0.8; item-total correlations for all subscales >0.5). Test-retest reliability was confirmed for all items (weighted kappas >0.6) and subscales (intraclass correlation coefficients >0.90). Conclusions: The English IPA is a valid, reliable and acceptable measure of participation and autonomy in people with a range of conditions and can make a unique and fundamental contribution to outcome assessment. Further research is required to examine the responsiveness of the IPA to change over time, its clinical utility and suitability for use with people from ethnic minorities and with older people.

Neuropsychiatric interpretations of postencephalitic movement disorders.

This study reviews the impact of encephalitis lethargica (EL) on concepts of behaviour and movement during the 1920s and 1930s. Clinicopathological correlations were imprecise but supported the role of subcortical structures in complex patterns of motor behaviour. This possibility challenged the widely assumed hegemony of the cerebral cortex. There was a perceived link between involuntary movements and reduced impulse control and also between parkinsonism and a defect in volition. Contemporary observers interpreted postencephalitic phenomena such as oculogyria in psychodynamic as well as in neurophysiological terms. EL also gave some support to the idea that neuroses such as obsessional neurosis and hysteria might have an organic basis. These speculations recently have acquired more credibility. The large amount of literature on EL and its sequelae could perhaps make further contributions to understanding the pathology of voluntary movement and action.

Is patient-centred care a good thing?:

The problem: Rehabilitation professionals recognize the need to adopt a social as well as a medical model of disability, but the full implications of a social orientation towards disability are less easily accepted. If the physical environment can both produce and alleviate disability, so also can the social environment. If disablement is not to be seen as the problem of one individual then problems in rehabilitation must be ‘owned’ not solely by a single patient but also by other people implicated in a situation. It follows that ‘patient-centred care’, where a professional directs assessments and interventions towards one person, has shortcomings in rehabilitation. Theoretical considerations: A human systems model, shifting the focus of rehabilitation towards relationships, enables rehabilitation problems to be seen as provisional and context-dependent; the relational context of problems is clarified, and the positive and negative effects of professional power are more apparent. Clinical implications: Rehabilitation practitioners using a systemic approach would no longer view ‘carers’ and other significant individuals as mere bystanders but would integrate them within rehabilitation’s ethical and therapeutic system. Professionals would more readily recognize their roles within such a system, and would be better positioned to manage their negative as well as their positive effects.

Multidisciplinary approaches in progressive neurological disease: can we do better?

Progressive neurological disease (PND) is an important cause of disability in the community and hence a focus for the forthcoming National Service Framework on long term conditions.1 About 300 per 100 000 are affected by the two most common conditions in the group, multiple sclerosis (MS) and idiopathic Parkinson’s disease (PD). PND produces complex patterns of physical and cognitive impairment.nnWe will first consider the needs of people with PND. How can rehabilitation concepts be applied to people with PND? What problems do they face? The second section will outline the resources relevant to neurological rehabilitation and we will conclude by considering how services should be integrated. Inevitably, the article will highlight shortcomings in current services. Can we do better?nnWhat do people with PND need? To understand the needs of any patient group we require a conceptual framework. Two questions arise. How can we use the term rehabilitation in PND? What should be expected from clinical neurologists?nn### Applying rehabilitation concepts in progressive diseasennTwo principles apply to all forms of rehabilitation (see Barnes on p iv3). Firstly, rehabilitation is an active process, distinguished both from spontaneous improvement in the patient (recuperation or convalescence) and from services supplied to the non-participating patient (care). Secondly, rehabilitation achieves change through person centred goals. Note that not everyone will desire change to the same extent, or in the same way. Professionals must be aware that most disabled people seek support and care without wishing for any form of rehabilitation, and many will have quite different aspirations from those conceived by their neurologist. With these principles in mind, we will now consider some of the special characteristics of rehabilitation in PND. Many characteristics are common to specific patient groups—for example, MS,2 neuromuscular disorders,3 and PD.4nn#### Disease management or self managementnnFar from being an optional add-on, the rehabilitation approach is fundamental …

On doing nothing: descriptions of sleep, fatigue, and motivation in encephalitis lethargica.

Epidemics of encephalitis lethargica (EL), from 1917 to the 1930s, are an important milestone in the history of movement disorders. Today, the two best‐known features of EL are somnolence and parkinsonism but the full clinical picture was variable and complex. States of wakeful inactivity—as opposed to drowsiness—were often described both in the acute and postacute stages and were referred to in the EL literature as “lethargy” or “torpor.” The study described here is based on a survey of clinical descriptions published in English, French, and German from 1917 to 1942. Its focus is on the history of clinical ideas, rather than applying modern pathophysiological concepts retrospectively. Descriptions of lethargy are explored as a way of elucidating concepts of sleep, fatigue, and motivation during the study period.

Chronic Fatigue Syndrome

In this article, we outline GP management of chronic fatigue syndrome (CFS), the condition also known colloquially in the UK as ‘ME’. The paper is based on National Institute for Health and Clinical Excellence (NICE) guidelines and also incorporates evidence-based strategies available to specialist services. GPs are well placed to make an early diagnosis of CFS and give patients helpful advice to manage their fatigue, hopefully avoiding multiple inappropriate referrals to specialist medical clinics.

Better questions, less uneasy answers.

What first drew me to neurology was diagrams: long tracts in the cord, decussation in the pons, cortical maps. Neurology, somewhat like haematology, immunology and chemical pathology, can be a very diagrammatic specialty. My question is this: where in our diagrams do we place a person’s motivations, thoughts or feelings? Death certificates pronounce D to be due to C, which is due to B and so on, but this kind of logic is unconvincing when we try to incorporate psychological or social factors in a causal chain leading to a neurological symptom.nnMany diseases are supposed to be caused by stressful events or, more vaguely, by “anxiety”. Anxiety hovers in neurological parlance some distance both from its DSM IV usage and from our everyday experience. Patients may protest (if they dare) that they have nothing to worry about, but neurologists will still often insist that their headaches, dizziness and so on are caused by anxiety. “Psychogenesis”, as Aubrey Lewis wrote, is a “confused …

The use of a multidisciplinary rehabilitation assessment clinic as an alternative to hospital admission

An interdisciplinary outpatient rehabilitation clinic was set up to assess patients with severe and complex disabilities. The rehabilitation team consisted of a physician, a nurse, a community liaison occupational therapist, a community physiotherapist and a speech and language therapist. Each patient was assessed in the clinic for half a day. The patients carers were encouraged to attend. A total of 25 consecutive new patients were studied. The findings of the study suggest that the range of therapeutic interventions carried out during the outpatient clinic visit were comparable to the standard model of care. To evaluate the effectiveness of this service in preventing hospital admissions the case histories of the study patients were presented to three consultants in rehabilitation medicine who were asked to give their management decision on each case, but were not told the objectives of the study. Analysis of the consultants decisions showed that there was agreement between all consultants that five patients needed admission to hospital for evaluation or treatment and two out of the three physicians said that they would have admitted a further eight patients. In fact, none of our patients was admitted, which suggests that the model of outpatient multi disciplinary assessment service proposed here may reduce the need for admissions to hospital.