Multidisciplinary ALS care improves quality of life in patients with ALS.
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.


CONCLUSIONS
High standard of care improves mental quality-of-life in patients with ALS.
Van den Berg
J P
JP
Department of Neurology, Rudolf Magnus Institute of Neuroscience, University Medical Centre Utrecht, Utrecht, The Netherlands. j.vanden.berg@meandermc.nl
Kalmijn
S
S
Lindeman
E
E
Veldink
J H
JH
de Visser
M
M
Van der Graaff
M M
MM
Wokke
J H J
JH
Van den Berg
L H
LH
D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000451:nursing* / Q000523:psychology / Q000534:rehabilitation*; D017028:Caregivers / Q000706:statistics & numerical data / Q000639:trends; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010348:Patient Care Team; D011581:Psychological Tests; D011787:Quality of Health Care / Q000592:standards / Q000706:statistics & numerical data*; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D016896:Treatment Outcome