Motor neurone disease: disability profile and service needs in an Australian cohort
ABSTRACT Motor neurone disease (MND) places considerable burden upon patients and caregivers. This is the first study, which describes the disability profile and healthcare needs for persons with MND (pwMND) in an Australian sample from the perspective of the patients and caregivers to identify current gaps in the knowledge and service provision. A prospective cross-sectional community survey of pwMND (n=44) and their caregivers (n=37) was conducted, to determine symptoms and problems affecting daily living. Standardized assessments were carried out to determine the disease severity for stratification purposes, service needs and gaps. The mean age was 61 years with more men affected than women (3 : 2). The severity of disease was high (n=18; 41%) based on the Amyotrophic Lateral Sclerosis Functional Rating Scale. Despite the high level of disability, 11 (25%) solely relied on their families for all assistance. Caregivers were mostly partners (mean age: 57 years). PwMND reported more pain, emotional disturbance and spasticity/cramps/spasms. Caregivers focused more on psychosocial issues. Nineteen (43%) pwMND reported gaps in the service in rehabilitation therapy and respite. Significantly proportionally, more caregivers (n=19; 51%) reported gaps particularly in the area of psychosocial support. The gaps identified in the MND care should be prioritized for future service development using the 'neuropalliative rehabilitation' model of care. For improved consensus of care and communication among treating clinicians, the framework of International Classification of Functioning, Disability and Health should be explored in this population.
- SourceAvailable from: Louisa ngAmyotrophic Lateral Sclerosis, 01/2012; , ISBN: 978-953-307-806-9
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ABSTRACT: 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). 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. 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. 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.Disability and Rehabilitation 02/2012; 34(4):295-303. DOI:10.3109/09638288.2011.606345 · 1.84 Impact Factor
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ABSTRACT: 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.07/2011; 2011:871237. DOI:10.1155/2011/871237