Louisa Ng

Multidisciplinary rehabilitation for adults with multiple sclerosis

To assess the effectiveness of organised MDR in adults with MS. MDR was defined as an inpatient, outpatient, home or community based programme, delivered by two or more disciplines in conjunction with physician consultation, and targeted towards improvements at the level of activity and/or participation. METHODS The Cochrane MS Group methods search strategy identified all randomised (RCT) and controlled (CCT) clinical trials that compared MDR with routinely available local services or lower levels of intervention, or trials comparing interventions in different settings or at different levels of intensity. Three reviewers selected trials and rated their methodological quality independently. Methodological quality criteria (n = 17) proposed by van Tulder and colleagues 12 were used to assess internal validity, and descriptive and statistical criteria (details are available in the full review). Quantitative analysis was not possible because of the use of diverse outcomes and other clinical heterogeneity. Therefore, qualitative synthesis of ‘‘best evidence’’ was presented based on levels of evidence proposed by van Tulder and colleagues. 2

Identification of Personal Factors in Motor Neurone Disease: A Pilot Study

Motor neurone disease (MND) is a devastating condition. This preliminary study aims to identify relevant personal factors affecting the experience of living with MND from the perspective of persons with MND (pwMND) in an Australian cohort. A prospective cross-sectional survey of pwMND (n = 44) using an open-ended questionnaire identified personal factors that were categorised thematically. Standardised questionnaires assessed disease severity: depression, anxiety, and stress and coping strategies. Personal factors identified included demographic factors (socioeconomic status), emotional states (depression, anxiety, and fear), coping strategies (problem-based coping and denial), personality, beliefs (religious and personal values), attitudes (of the patient), and others (such as perceived support). An understanding of personal factors by treating clinicians is essential in the provision of optimal care in MND. This study may assist in the development of personal factors within the International Classification of Functioning, Disability, and Health for improved consensus of care and communication amongst treating clinicians.

Use of the international classification of functioning, disability and health to describe patient-reported disability: A comparison of motor neurone disease, Guillain-Barré syndrome and multiple sclerosis in an Australian cohort

Purpose: To compare patient-reported disability across three long-term neurological conditions [motor neurone disease (MND), Guillain-Barré syndrome (GBS) and multiple sclerosis (MS)] using the International Classification of Functioning, Disability and Health (ICF). Methods: A prospective cross-sectional survey of Australian community-based persons with MND (n = 44). Their MND-related problems were linked with ICF categories (second level) using open-ended questionnaires and ‘linkage rules’ and compared to similar data collected for GBS (n = 77) and MS (n = 101) participants. Results: MND participants were older (mean age 61 years, GBS 55, MS 49) with more males (66%, GBS 59%, MS 29%). Seventy ICF categories in MND were identified (GBS 41, MS 63): “body function” 15 (GBS 7; MS 18); “body structure” 5 (GBS 3, MS 5); “activities and participation” 40 (GBS 25, MS 30); “environmental factors” 10 (GBS 6, MS 10). The main areas linked in “activities and participation” were mobility, self care, general tasks and demands, domestic life, interpersonal interactions and relationships, major life areas and community, social and civic life; environmental factors included products and technology, natural environment, support and relationships, services, systems and policies. Conclusions: Comparison of three long-term neurological conditions will assist with development of a core set of categories to optimise consensus of care and communication amongst treating clinicians. Implications for Rehabilitation Motor Neurone Disease causes diverse and challenging symptoms and disability. A set of relevant ICF categories in Motor Neurone Disease would be useful in both clinical and research settings for optimising care given the rare incidence of Motor Neurone Disease. Motor Neurone Disease can be compared to other long-term neurological conditions (Multiple Sclerosis and Guillain-Barré Syndrome) to assist with development of a core set of categories to optimise consensus of care and communication amongst treating clinicians.

Rehabilitation for people with multiple sclerosis: an overview of Cochrane systematic reviews

This is a protocol for a Cochrane Review (Overview). The objectives are as follows: This review will systematically evaluate evidence from published Cochrane Reviews/meta analyses of clinical trials to determine the effectiveness and safety of rehabilitation interventions for the management of people with MS, in order to improve patient outcomes and will highlight current gaps in knowledge. Specific questions to be addressed by this review include the following. Are rehabilitation interventions (unidisciplinary, or multidisciplinary, or both) effective in minimising impairment, activity limitation, and participation restriction in people with MS? Are rehabilitation interventions (unidisciplinary, or multidisciplinary, or both) effective in minimising the burden of care and improving quality of life in people with MS? What types of rehabilitation interventions (unidisciplinary, or multidisciplinary,or both) are effective in people with MS, and in which setting? The specific aim of the review is to compile evidence from published multiple Cochrane Reviews of interventions for people with MS into one accessible and coherent document to be used by clinicians, researchers, funding bodies, policy makers, and consumers to aid decision making and evidence implementation.

Multidisciplinary Rehabilitation in Amyotrophic Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) is the most common chronic neurodegenerative disorder of the motor system in adults. It is a relatively rare disease with a reported population incidence of between 1.5 and 2.5 per 100,000 per year worldwide and a gender ratio of 3:2 men: women. Amyotrophic Lateral Sclerosis is characterized by the loss of motor neurons in the cortex, brain stem, and spinal cord, manifested by upper and lower motor neuron signs and symptoms affecting bulbar, limb, and respiratory muscles. Death usually results from respiratory failure and follows on average two to four years after onset, but some may survive for a decade or more. Amyotrophic Lateral Sclerosis is a devastating condition with unknown aetiology and no current cure. The symptoms in ALS are diverse and challenging and include weakness, spasticity, limitations in mobility and activities of daily living, communication deficits and dysphagia, and in those with bulbar involvement, respiratory compromise, fatigue and sleep disorders, pain and psychosocial distress. The International Classification of Functioning, Disability and Health (ICF) (World Health Organization, 2001), defines a common language for describing the impact of disease at different levels: impairment (body structure and function), limitation in activity and participation (see Figure 1). Within this framework ALS related impairments (weakness, spasticity), can limit ‘‘activity” or function (decreased mobility, self-care, pain) and ‘‘participation” (driving, employment, family, social reintegration). ‘‘Contextual factors’‘, such as environmental (extrinsic) and personal factors (intrinsic) interact with all the other constructs to shape the impact of ALS on patients and their families. The impact of ALS upon patients, their caregivers (often family members) and on society is substantial, often beginning long before the actual diagnosis is made, and increasing with increasing disability and the need for medical equipment and assisted care (Klein and Forshew, 1996). Given the broad spectrum of needs, current management spans from diagnosis (acute neurological needs) through to symptomatic and supportive rehabilitation and palliative care. The interface between neurology, rehabilitation and palliative care is of utmost importance to ensure co-ordinated care for persons with ALS rather than duplicating services (Royal College of Physicians National Council for Palliative Care and British Society of Rehabilitation Medicine, 2008). It should be noted however that the focus of this chapter is on the rehabilitation phases, hence discussion of acute neurological and palliative care aspects are limited.

Effectiveness of a structured sexual rehabilitation programme following stroke: A randomized controlled trial

BACKGROUND Sexual activity is an integral part of life; it is important to address sexual health after stroke, but this is often poorly done. OBJECTIVE To assess the effectiveness of a structured sexual rehabilitation programme compared with written information alone regarding sexual and psychological functioning (anxiety, depression, stress), functional independence and quality of life in an Australian stroke cohort. METHODS A total of 68 participants were randomized to a structured sexual rehabilitation programme (treatment group; n = 35) or to written information alone (control group; n = 33). Outcome measures included: Sexual Functioning Questionnaire Short Form; Depression, Anxiety Stress Scale; Functional Independence Measure, and Stroke and Aphasia Quality of Life Scale-39 Generic. Assessments were performed at baseline, 6 weeks and 6 months after the intervention. Participants preferences regarding how they would like to receive information, who from, and how frequently, were collected at baseline. RESULTS There was no difference between groups for any outcome measures. Half of the participants (51%) wished to receive information and were divided equally into preferring written information vs face-to-face counselling, with the majority (54%) preferring information after discharge from an inpatient setting. CONCLUSION Provision of written information alone appears to be as effective as a 30-min individualized sexual rehabilitation programme in an inpatient setting. Further research is needed regarding longer term outcomes and outpatient settings.

Supportive Care Needs following Cancer Treatment: A Comparison of Breast and Brain Cancer in an Australian Cohort

Objective. To assess and identify patient-reported supportive care needs following definitive treatment in persons with breast cancer (BC) and primary brain tumours (gliomas) (BT) in an Australian community cohort and to assess the commonalities and/or discrepancies of the reported needs in these oncological populations. Methods. A prospective cross-sectional survey of persons with BC () and BT () using questionnaires for supportive care needs, psychological morbidity, and quality of life. Results. BT participants were younger than BC patients (mean ages 51 and 57 years). The median time since diagnosis for both groups was over 2 years. The level of psychological morbidity, mainly depression, was high in both groups: BC (22%) and BT (20%). Participants in both groups reported at least one need (“met” or “unmet”). The BC patients reported higher numbers of “needs” and “unmet” needs compared with BT patients (mean 13.7 versus 11.6 needs; “unmet” needs mean 6.0 versus 4.1). The common “met” and “unmet” needs highlighted by both groups were comparable; the domain for most “met” needs included comprehensive cancer care, while “unmet” needs related to existential survivorship issues. Conclusion. Despite successful treatment many cancer survivors experience unmet supportive care needs in longer term. Understanding the impact of these beyond the acute phase is important as care shifts to community settings. More research in existential survivorship issues is needed.

Environmental enrichment for stroke and other non-progressive brain injury

This is the protocol for a review and there is no abstract. The objectives are as follows: To assess the effects of environmental enrichment for patient activity and participation in people who have stroke or non-progressive brain injury.

International classification of functioning, disability and health and motor neurone disease rehabilitation

Purpose – The purpose of this paper is to determine if issues relevant to multidisciplinary rehabilitation care from the perspective of the patient and caregiver can be addressed utilising the International Classification of Functioning, Disability and Health (ICF) framework; also to identify gaps in evidence and service provision to optimise clinical care.Design/methodology/approach – Participants with motor neurone disease (MND) (n=44) and their caregivers (n=37) were recruited from a tertiary MND clinic. Cross‐sectional predominantly qualitative methodology was used to explore the perspectives of MND patients and their caregivers on disability and service gaps. Their disability experience and relevant environmental factors were then mapped onto the ICF framework. Personal factors were described. The impact of MND on caregivers was also described.Findings – There were significant gaps in MND care. In particular, the need for coordinated care by neurology, rehabilitation and palliative care services (“ne...