Motor Neurone Disease: Disability Profile and Service Needs in an Australian Cohort

Autor/inn/en	Ng, Louisa; Talman, Paul; Khan, Fary
Titel	Motor Neurone Disease: Disability Profile and Service Needs in an Australian Cohort
Quelle	In: International Journal of Rehabilitation Research, 34 (2011) 2, S.151-159 (9 Seiten) PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	0342-5282
DOI	10.1097/MRR.0b013e328344ae1f
Schlagwörter	Caregivers; Diseases; Surveys; Rating Scales; Patients; Severity (of Disability); Neurological Impairments; Foreign Countries; Profiles; Health Needs; Symptoms (Individual Disorders); Daily Living Skills; Pain; Emotional Response; Mental Health; Social Influences; Social Support Groups; Australia + Suchen Sie Ihr Suchwort? Caregiver; Carer; Betreuungsperson; Pfleger; Disease; Krankheit; Survey; Umfrage; Befragung; Rating-Skala; Patient; Schweregrad; Neurodegenerative Erkrankung; Ausland; Charakterisierung; Profilanalyse; Psychiatrische Symptomatik; Alltagsfertigkeit; Schmerz; Emotionales Verhalten; Psychohygiene; Sozialer Einfluss; Social support; Soziale Unterstützung; Australien
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. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2017/4/10