Motor neurone disease: disability profile and service needs in an Australian cohort.

Department of Rehabilitation Medicine, Royal Melbourne Hospital, Royal Park Campus, Parkville, Victoria, Australia.
International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation (Impact Factor: 0.36). 03/2011; 34(2):151-9. DOI: 10.1097/MRR.0b013e328344ae1f
Source: PubMed

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.

  • [Show abstract] [Hide abstract]
    ABSTRACT: People with amyotrophic lateral sclerosis (ALS) frequently express dissatisfaction with services. Patient satisfaction with services in ALS care is not always measured and service user perspectives are not usually included when evaluating the outcomes of care. There is a lack of consensus on what constitutes satisfaction for patients in ALS care. To date, health care professionals' conceptualization of outcomes in ALS care has excluded measures of patient satisfaction with services. Exploring the context of the ALS service user experience of care will identify a conceptual framework that will include the domains of satisfaction with care for patients with ALS. An instrument that draws on the ALS patient perspective of services, developed on the basis of qualitative investigation, should be used to measure satisfaction with services.
    The American journal of hospice & palliative care 10/2011; 29(5):362-7.
  • Source
    [Show abstract] [Hide abstract]
    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 01/2012; 34(4):295-303. · 1.54 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that imposes a great burden on the patient, the patient's family and society. However, we lack information about the total disease burden at a national level, especially regarding costs before and after diagnosis and the consequences for spouses. We aimed to estimate the factual direct and indirect costs of ALS in a national sample. Using records from the Danish National Patient Registry (1998-2009), 2,394 patients with ALS were identified and subsequently compared with 9,575 randomly chosen control subjects matched for age, gender and geographic area/civil status. Direct costs, including frequencies of primary and sector contacts and procedures, and medication from primary and secondary sectors, were obtained from the Danish Ministry of Health, the Danish Medicines Agency, and the National Health Security. Indirect costs included labour supply and social transfer payments, and were based on income data derived from Coherent Social Statistics. Patients with a diagnosis of ALS had poor survival. The average (95 % CI) 5-year survival rate was 0.278 (0.358-0.298) compared with 0.865 (0.858-0.872) among controls. Patients with ALS had significantly higher rates of health-related contact and medication use and higher socioeconomic costs. They also had very low employment rates, while those in employment had a lower income level than control subjects. The annual mean excess health-related cost was 18,918 for each ALS patient. However, spouses showed no excess health usage; in fact, their employment and income rates were higher, and the net cost was reduced by - 3,420. We conclude that ALS has serious mortality, health and socioeconomic consequences for patients. However, the consequences for spouses are complex; they tend to compensate for the social consequences to patients by increasing their net income after ALS diagnosis.
    Journal of Neurology 10/2012; · 3.58 Impact Factor