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From the Departments of Neurology (Drs Van den Berg, Kalmijn, Wokke, Veldink and L.H. Van den Berg) and Rehabilitation (Dr. Lindeman), Rudolf Magnus Institute of Neuroscience, and the Julius Center for Health Sciences and Primary Care (Dr. Kalmijn), University Medical Centre Utrecht, Utrecht; the Department of Neurology (Drs. De Visser and Van der Graaff), Academic Medical Center, University of Amsterdam; and the Department of Rehabilitation (Dr. J.P. van den Berg), Meander Medical Center, Amersfoort, the Netherlands.
Objective: To examine the effect of multidisciplinary ALS care on the quality-of-life (QoL) in patients with ALS and their caregivers.
Methods: In a cross-sectional study, 208 patients with ALS and their caregivers were interviewed. QoL was assessed using the 36-item Short Form Health Survey (SF-36) and two visual analogue scales (VAS). Criteria for multidisciplinary ALS care were: an ALS team headed by a consultant in rehabilitation medicine and consisting of at least a physical therapist, occupational therapist, speech pathologist, dietician and a social worker; use of the Dutch ALS consensus guidelines for ALS care; and at least six incident ALS patients per year.
Results: Clinical characteristics and functional loss of the 133 patients receiving multidisciplinary ALS care and the 75 patients receiving general ALS care were similar. The percentage of patients with adequate aids and appliances was higher in those with multidisciplinary ALS care (93.1 vs 81.3%, p = 0.008), whereas the number of visits to professional caregivers was similar in both groups. Patients in the multidisciplinary ALS care group had a better mental QoL on the SF-36 Mental Summary Score than those in the general care group (p = 0.01). The difference in QoL was most pronounced in the domains of Social Functioning and Mental Health, and was independent of the presence of aids and appliances. No significant differences were found in the SF-36 Physical Summary Score, VAS, or in QoL of caregivers of patients with ALS.
Conclusion: High standard of care improves mental quality-of-life in patients with ALS.
Supported by a grant from the Prinses Beatrix Fonds, Den Haag, an ALS Stichting Fonds grant, and a Stichting Bijstand grant from the Meander Medisch Centrum.
Disclosure: The authors report no conflicts of interest.
Received March 21, 2005. Accepted in final form July 5, 2005.
Address and correspondence and reprints request to Dr. J.P. Van den Berg, Department of Rehabilitation, Meander Medisch Centrum, St. Elisabeth Hospital, P.O. Box 1502, 3800 BM Amersfoort, the Netherlands; e-mail: j.vanden.berg{at}meandermc.nl
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