IL-1RA and IL-1beta are disease severity genes rather than disease susceptibility genes. Furthermore, these gene polymorphisms may define subgroups of patients with a worse prognosis.
BackgroundThere is a growing need to offer persons with multiple sclerosis (PwMS) possibilities for self-management and to integrate multidisciplinary health data. In 2009–2014 we developed a patient-reported outcome based, interactive, web-based program (MSmonitor) for (self-)monitoring, self-management and integrated, multidisciplinary care in MS.MethodsThe notions underlying the MSmonitor concept and the program’s elements are described. We analyze MSmonitor’s role in the self-management of fatigue by retrospective comparison of fatigue and health-related quality of life (HRQoL) before and after usage of specific elements of MSmonitor, and by a correlative analysis between frequency of usage and fatigue change.ResultsAfter a step-wise development the program comprises six validated questionnaires: Multiple Sclerosis Impact Profile, Modified Fatigue Impact Scale-5 items (MFIS-5), Hospital Anxiety and Depression Scale, Multiple Sclerosis Quality of Life-54 items, and the 8-item Leeds Multiple Sclerosis Quality of Life (LMSQoL) questionnaires; two inventories: Medication and Adherence Inventory, Miction Inventory; two diaries: Activities Diary, Miction Diary; and two functionalities: e-consult and personal e-logbook. The program is now used in 17 hospitals by 581 PwMS and their neurologists, MS nurses, physical therapists, rehabilitative doctors, continence nurses, and family doctors. Those PwMS (N=105) who used the LMSQoL and MFIS-5 questionnaires at least twice in a period of up to 6 months, showed improved HRQoL (P<0.026). In the subgroup (N=56) who had also used the Activities Diary twice or more, the frequency of diary usage correlated modestly with the degree of fatigue improvement (r=0.292; P=0.028).ConclusionMSmonitor is an interactive web-based program for self-management and integrated care in PwMS. Pilot data suggest that the repeated use of the short MFIS-5 and LMSQoL questionnaires is associated with an increase in HRQoL, and that a repeated use of the Activities Diary might contribute to the self-management of fatigue.
BackgroundMSmonitor is an interactive web-based program for self-management and integrated, multidisciplinary care in multiple sclerosis.MethodsTo assess the utilization and valuation by persons with multiple sclerosis, we held an online survey among those who had used the program for at least 1 year. We evaluated the utilization and meaningfulness of the program’s elements, perceived use of data by neurologists and nurses, and appreciation of care, self-management, and satisfaction.ResultsFifty-five persons completed the questionnaire (estimated response rate 40%). The Multiple Sclerosis Impact Profile (MSIP), Medication and Adherence Inventory, Activities Diary, and electronic consultation (e-consult) were used by 40%, 55%, 47%, and 44% of respondents and were considered meaningful by 83%, 81%, 54%, and 88%, respectively. During out-patient consultations, nurses reportedly used the MSmonitor data three to six times more frequently than neurologists. As to nursing care, more symptoms were dealt with (according to 54% of respondents), symptoms were better discussed (69%), and the overall quality of care had improved (60%) since the use of the program. As to neurological care, these figures were 24%, 31%, and 27%, respectively. In 46% of the respondents, the insight into their symptoms and disabilities had increased since the use of the program; the MSIP, Activities Diary, and e-consult had contributed most to this improvement. The overall satisfaction with the program was 3.5 out of 5, and 73% of the respondents would recommend the program to other persons with multiple sclerosis.ConclusionA survey among persons with multiple sclerosis using the MSmonitor program showed that the MSIP, Medication and Adherence Inventory, Activities Diary, and e-consult were frequently used and that the MSIP, Medication and Adherence Inventory, and e-consult were appreciated the most. Moreover, the quality of nursing care, but not so neurological care, had improved, which may relate to nurses making more frequent use of the MSmonitor data than neurologists.
Pneumocephalus (the accumulation of intracranial air) usually is associated with trauma, neoplasm, infection, or surgery. Spontaneous pneumocephalus is rare. [1][2][3][4][5][6][7] We describe a patient with a large, asymptomatic pneumocephalus caused by the frequent performance of Valsalva's maneuver.Case report. A 30-year-old woman was admitted with a 5-week history of persisting shortness of breath, fever, coughing, and weight loss of 12 kg. Two years previously she was found to have bronchial asthma for which she used fluticasone and salbutamol. Chest X-ray revealed a large pulmonary abscess in the right lung. Haemophilus influenzae was cultured from material obtained by bronchoalveolar lavage, and the patient was subsequently treated with antibiotics. As part of the clinical workup, an X-ray of the paranasal sinuses was performed. It revealed a lytic lesion in the left temporoparietal area, which was not present on a similar X-ray obtained 2 years earlier.CT and MRI scans of the brain showed a large, epidural air collection seemingly in continuity with the left mastoid. Extensive hyperpneumatization of the left mastoid and erosion of the adjacent bone were also present, and there was a slight mass effect and midline shift of the brain. There were no signs of infection of the mastoid. It was revealed that during the past 18 months, the patient frequently performed Valsalva's maneuver without obvious reason. Also, the left side of her head had been hit by the gig of a sailing boat. However, she had not lost consciousness, nor had any bruises or hematoma been observed. Neurologic examination was normal except for minimal congenital pupillary asymmetry, the left pupil being slightly larger. High-resolution CT confirmed the presence of a large aerocele (8.9 ϫ 3.6 cm) with several septa, separated from the brain parenchyma by a thin layer (figure, A). We decided to refrain from surgical intervention and advised the patient to cease performing Valsalva's maneuver. Follow-up CT 2 months later showed complete resolution of the pneumocephalus (see figure, B). The patient had recovered fully from her pulmonary abscess and was free from complaints. Another 3 months later, repeat MRI of the brain showed only a small fluid collection where the pneumocephalus had been (see figure, C and D) Discussion. Spontaneous pneumocephalus is an uncommon cause of intracranial collection of air.
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