Differences in coping behavior could be observed for different levels of impairment through MS. Patients tackle more intensively and more actively with their disease when trying to adapt to increasing disability with an EDSS range between 3.0 and 6.0. In addition, the coping behavior of patients with MS was connected to social support, especially support by family, friends, or other patients with MS. Results refer to the importance of special trainings to enhance coping abilities of patients with MS.
Objective: X-linked adrenoleukodystrophy (X-ALD) is a rare genetic disorder characterized by progressive demyelination ranging from mild myelopathic forms (adrenomyeloneuropathy [AMN]) to severe cerebral variants (adult cerebral adrenoleukodystrophy [ACALD]). The aim of this study was to compare cognitive function in adult-onset X-ALD phenotypes. Methods: Cognitive function in various domains (intelligence, attention, memory, executive function, and processing speed) was assessed in 172 adults (117 with AMN, 30 with arrested ACALD, and 25 with acute ACALD) using comprehensive neuropsychological batteries. Phenotype differences were examined by analyses of variance. Results: X-ALD phenotypes significantly differed in nonverbal intelligence, sustained attention, verbal encoding, nonverbal recognition, and processing speed (ps < 0.050). No group differences emerged regarding verbal intelligence, verbal retrieval and recognition, and executive function (ps > 0.050). Specifically, patients with acute ACALD showed severe cognitive deficits compared to AMN and normal data, with largest effects on processing speed. Contrary, cognition was overall intact in patients with AMN, independent of sex and corticospinal tract involvement, and those with arrested ACALD showed mild cognitive dysfunction, particularly in verbal encoding and processing speed. Interpretation: Cerebral demyelination in patients with X-ALD causes white matter dementia, mainly characterized by an extreme slowdown in processing speed associated with deficits in attention and learning. Most patients with AMN show intact cognitive function. Future prospective, longitudinal studies with more sensitive imaging techniques are required to clarify whether early mild cognitive dysfunction found in some patients with AMN may be associated with subtle myelin abnormalities that do not yet appear as white matter lesions on cerebral MRI (cMRI) but have the potential to serve as early predictors of later cerebral progression.
SummaryMain ProblemTreatment options for multiple sclerosis (MS) have enlarged tremendously over the last years. Nonetheless, lots of patients look for alternative treatment options. The use of complementary and alternative medicine (CAM) is widespread in MS, however, its scientific investigation is limited so far. The aim of the study is to analyse clinical and demographical differences of MS patients in dependency of their CAM utilization as coping strategy.MethodsA total of 254 patients with a clinically definite MS were examined in a semistructured interview. Additional standardized questionnaires were used to measure different aspects of coping with illness. All patients underwent neurological examination.ResultsAbout 206 of all enrolled patients are CAM users (81.1%). They have a longer disease duration (8.3 years vs 7.3 years, P = 0.028) and show higher disability (median EDSS 4.0 vs 2.0, P < 0.001) than nonusers. CAM users differed significantly from nonusers in their coping behavior (P = 0.035). Users are brooding more heavily over the disease, looking for more information about MS, and are looking for a sense of their disease in religion more often than nonusers. CAM users are at a higher risk of depression. Almost two‐thirds of CAM users (57.6%) reported positive effects on the well‐being of their state of health.ConclusionCoping behavior differs significantly between CAM users and nonusers. CAM utilization is associated with higher disability and depression. More than 80% of our cohort has used alternative or complementary methods. CAM utilization may mirror unmet needs in the treatment of MS.
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