Dataset Information

Multiple sclerosis and pregnancy: what does the patient think? a questionnaire study.

ABSTRACT:

Background

Multiple Sclerosis (MS) is primarily a disease of women in their childbearing years. Pregnancy and puerperium have opposite effects on the course of the disease. Nevertheless, no studies have been carried out yet on the level of information among female MS-patients regarding the interaction between MS and pregnancy.

Findings

Demographic data, clinical features of MS, course of MS during pregnancy and puerperium as well as knowledge concerning MS and pregnancy were evaluated by means of a questionnaire in 154 female MS-patients. The level of information was significantly higher (p < 0.001) in women who had been pregnant in the past with the diagnosis MS known at this point of time. Furthermore patients reported about a lower frequency of relapses during pregnancy and a higher frequency of relapses in the first six months after giving birth.

Conclusions

The findings illustrate a lack of knowledge in female MS-patients concerning the interactions of MS and pregnancy. In order to make their own independent decision based on scientific facts known to date, female MS-patients need to be better informed on issues regarding MS and pregnancy.

SUBMITTER: Albrecht P

PROVIDER: S-EPMC2853552 | biostudies-literature | 2010 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Multiple sclerosis and pregnancy: what does the patient think? a questionnaire study.

Albrecht Peter P Fischer Dorothea D Moser Andreas A

BMC research notes 20100403

<h4>Background</h4>Multiple Sclerosis (MS) is primarily a disease of women in their childbearing years. Pregnancy and puerperium have opposite effects on the course of the disease. Nevertheless, no studies have been carried out yet on the level of information among female MS-patients regarding the interaction between MS and pregnancy.<h4>Findings</h4>Demographic data, clinical features of MS, course of MS during pregnancy and puerperium as well as knowledge concerning MS and pregnancy were evalu ...[more]

PMID: 20361873

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Project description:BACKGROUND:The internet is a source of knowledge and medium widely used in services that facilitate access to information and networking. Multiple sclerosis (MS) patients find the possibility of acquiring information relating to their condition particularly rewarding. OBJECTIVE:We aimed to identify Polish MS patients' preferences by analyzing a percentage of internet users and determining the most common search subjects and patients' approach to information on the internet. Disability connected with the condition, its duration, and other factors that influence patients' internet use were examined along with instances of relations established through the internet and their durability. METHODS:The study examined 1045 patients (731 women, 314 men) treated in 10 Polish MS centers, of whom 932 (89.19%) declared to be internet users. Their average age was 40.65 (SD 11.06) and average MS duration was 9.08 (SD 6.97) years. The study used a proprietary survey on information seeking, the range of searched subjects, and internet usage frequency. RESULTS:The majority of the patients (494/932, 53.0%) used the internet 6-7 times per week and 4.3% (40/932) declared they spent minimum 2 hours per day. The most commonly searched subjects were world news (604/932, 72.9% of patients using the internet); 60.8% (504/932) searched for information on their condition, particularly for new treatment methods (562/932, 67.8%) and the course of illness (520/932, 62.7%). One's sex had no impact on internet usage (female vs male, odds ratio [OR] 1.13, 95% CI 0.72-1.77), although a patient's age might, at varying degrees. We found several significant associations using a .05 significance level: a patient with higher education used the internet 9 times more often than one with primary education (OR 8.64, 95% CI 3.31-22.57); lasting relationships increased chances of internet usage by 10-fold compared to widowers (OR 0.12, 95% CI 0.05-0.31); living in a city with a population over 100,000 increased chances by nearly 6 times compared with the countryside (OR 5.59, 95% CI 2.72-11.48); the relapsing-remitting MS type saw a 2-fold increase compared with the primary progressive MS type (OR 0.47, 95% CI 0.29-0.75); and those needing assistance were 2 times less likely to use the internet than patients who could move independently (OR 0.53, 95% CI 0.31-0.89). More than half of the patients (489/932, 52.5%) did not discuss the information found on the internet with their neurologists; 15.9% (148/932) believed that relationships established through the internet can be stable. CONCLUSIONS:The majority of Polish patients use the internet as a crucial information source on their condition and innovative treatment methods. The internet can be helpful in establishing new relationships, which are usually short-lived. Polish patients do not frequently discuss the information gathered on the internet with their doctors.

Project description:Abstract Registries have the potential to tackle some of the current limitations in determining the long-term impact of multiple sclerosis. Online assessments using patient-reported outcomes can streamline follow-up enabling large-scale, long-term, cost-effective, home-based, and patient-focused data collection. However, registry data are sparsely sampled and the sensitivity of patient-reported outcomes relative to clinician-reported scales is unknown, making it hard to fully leverage their unique scope and scale to derive insights. This retrospective and prospective cohort study over 11 years involved 15 976 patients with multiple sclerosis from the United Kingdom Multiples Sclerosis Register. Primary outcomes were changes in two patient-reported outcomes: Multiple Sclerosis Impact Scale motor component, and Multiple Sclerosis Walking Scale. First, we investigated their validity in measuring the impact of physical disability in multiple sclerosis, by looking at their sensitivity to disease subtype and duration. We grouped the available records (91 351 for Multiple Sclerosis Impact Scale motor and 68 092 for Multiple Sclerosis Walking Scale) by these two factors, and statistically compared the resulting groups using a novel approach based on Monte Carlo permutation analysis that was designed to cope with the intrinsic sparsity of registry data. Next, we used the patient-reported outcomes to draw novel insights into the developmental time course of subtypes; in particular, the period preceding the transition from relapsing to progressive forms. We report a robust main effect of disease subtype on the patient-reported outcomes and interactions of disease subtype with duration (all P < 0.0001). Specifically, patient-reported outcomes worsen with disease duration for all subtypes (all P < 0.0001) apart from benign multiple sclerosis (Multiple Sclerosis Impact Scale motor: P = 0.796; Multiple Sclerosis Walking Scale: P = 0.983). Furthermore, the patient-reported outcomes of each subtype are statistically different from those of the other subtypes at all time bins (Multiple Sclerosis Impact Scale motor: all P < 0.05; Multiple Sclerosis Walking Scale: all P < 0.01) except when comparing relapsing-remitting multiple sclerosis with benign multiple sclerosis and primary progressive multiple sclerosis with secondary progressive multiple sclerosis. Notably, there were statistically significant differences between relapsing-remitting and progressive subtypes at disease onset. Critically, the patient-reported outcomes are sensitive to future transitions to progressive subtypes, with individuals who transition presenting with higher patient-reported outcomes in their relapsing-remitting phase compared to individuals who don’t transition since onset (all P < 0.0001). Patient-reported outcomes capture different patterns of physical worsening over disease length and across subtypes; therefore, they are a valid tool to measure the physical impact of multiple sclerosis over the long-term and cost-effectively. Furthermore, more advanced physical disability manifests years before clinical detection of progressive subtypes, adding evidence to the presence of a multiple sclerosis prodrome. Lerede et al. found patient-reported outcomes to be a useful tool for tracking multiple sclerosis progression across subtypes and identifying early disability differences. They used permutation-based methods to analyse patient registry data, demonstrating the potential of online monitoring technologies to estimate multiple sclerosis progression risk early and support clinical decision-making. Graphical Abstract Graphical abstract

Project description:BackgroundThe Multiple Sclerosis Questionnaire for Physical Therapists (MSQPT) is a patient-rated outcome questionnaire for evaluating the rehabilitation of persons with multiple sclerosis (MS). Responsiveness was evaluated, and minimal important difference (MID) estimates were calculated to provide thresholds for clinical change for four items, three sections and the total score of the MSQPT.MethodsThis multicentre study used a combined distribution- and anchor-based approach with multiple anchors and multiple rating of change questions. Responsiveness was evaluated using effect size, standardized response mean (SRM), modified SRM and relative efficiency. For distribution-based MID estimates, 0.2 and 0.33 standard deviations (SD), standard error of measurement (SEM) and minimal detectable change were used. Triangulation of anchor- and distribution-based MID estimates provided a range of MID values for each of the four items, the three sections and the total score of the MSQPT. The MID values were tested for their sensitivity and specificity for amelioration and deterioration for each of the four items, the three sections and the total score of the MSQPT. The MID values of each item and section and of the total score with the best sensitivity and specificity were selected as thresholds for clinical change. The outcome measures were the MSQPT, Hamburg Quality of Life Questionnaire for Multiple Sclerosis (HAQUAMS), rating of change questionnaires, Expanded Disability Status Scale, 6-metre timed walking test, Berg Balance Scale and 6-minute walking test.ResultsThe effect size ranged from 0.46 to 1.49. The SRM data showed comparable results. The modified SRM ranged from 0.00 to 0.60. Anchor-based MID estimates were very low and were comparable with SD- and SEM-based estimates. The MSQPT was more responsive than the HAQUAMS in detecting improvement but less responsive in finding deterioration. The best MID estimates of the items, sections and total score, expressed in percentage of their maximum score, were between 5.4% (activity) and 22% (item 10) change for improvement and between 5.7% (total score) and 22% (item 10) change for deterioration.ConclusionsThe MSQPT is a responsive questionnaire with an adequate MID that may be used as threshold for change during rehabilitation of MS patients.Trial registrationThis trial was retrospectively (01/24/2015) registered in ClinicalTrials.gov as NCT02346279.

Dataset Information

Multiple sclerosis and pregnancy: what does the patient think? a questionnaire study.

Background

Findings

Conclusions

Publications

Multiple sclerosis and pregnancy: what does the patient think? a questionnaire study.

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