scholarly journals Desenvolvimento e Implementação de um Registo de Doentes: Experiência de um Centro de Esclerose Múltipla em Portugal

2021 ◽  
Vol 34 (13) ◽  
Author(s):  
João De Sá ◽  
João Ferreira ◽  
Ana Macedo

Introduction: Patient registries allow better evaluations of therapeutic outcomes and support personalized health care in several conditions. This study aimed to implement a local registry in a multiple sclerosis center in Portugal, in order to carry out a critical analysis of its development stages, and to perform an initial analysis of the included patients.Material and Methods: The establishment of the registry was divided in two phases – development (creation of the online platform for data entry) and implementation (recruitment of patients and retrospective and prospective collection of available information). A demographic and clinical analysis of patients was performed.Results: Neurologists and study coordinators participated in the project, accounting for a total of 1050 hours of work in the implementationphase. Amongst the 498 multiple sclerosis patients included, 72.9% were female and relapsing-remitting multiple sclerosis was the most common subtype of the disease. The most frequently prescribed drugs at diagnosis were beta interferons. Missing data in electronic health records were detected concerning the progression of disability and diagnostic tests.Discussion: The difficulties encountered could be mitigated by defining minimum elements to be included in patient records and by implementing more minimalist registries. This could reduce the time spent by healthcare professionals in collecting information, thus optimizing costs, and allowing the focus to be placed on personalized healthcare by taking advantage of the registry and its associated tools.Conclusion: Despite the amount of data collected within the scope of this study, several difficulties affected the implementation and maintenance of the registry, which could be overcome by improving future strategies.

2021 ◽  
Author(s):  
Tim Woelfle ◽  
Silvan Pless ◽  
Andrea Wiencierz ◽  
Ludwig Kappos ◽  
Yvonne Naegelin ◽  
...  

BACKGROUND Smartphones and their inbuilt sensors allow for the collection of a wealth of data about their owners. While passively collected data such as step counts can already provide meaningful insights, active tests allow for measuring function in more specific tasks. This could improve disease characterization and monitoring and could potentially support treatment decisions in multiple sclerosis (MS), a multifaceted chronic neurological disease with highly variable clinical manifestations. One challenge that has to be overcome in the assessment of changes over time is the analysis and interpretation of practice effects. OBJECTIVE In this study, we aimed to identify practice effects in active tests for cognition, dexterity, and mobility in user–scheduled, high–frequency, smartphone–based testing. METHODS We analyzed data from 251 self–declared persons with MS with a minimum of 5 weeks of follow–up and at least 5 tests per domain in the Floodlight Open study, a self–enrolment study accessible by smartphone owners from 16 countries. The collected data are openly available for scientists. Using bounded growth mixed models and quantile regression, we characterized practice effects for three different tests: Symbol Digit Modalities Test (SDMT) for cognition, Finger Pinching for dexterity, and Two Minute Walk for mobility. RESULTS Strong practice effects were found for N=4388 SDMT and N=17945 Finger Pinching tests with modelled boundary improvements of 39.6% (38.6%–40.9%) and 85.9% (83.2%–88.9%) over baseline, respectively. Half of the practice effect was reached after 9 repetitions for SDMT and 27 repetitions for Finger Pinching, 90% were reached after 31 and 89 repetitions, respectively. While baseline performance levels were highly variable across participants, no significant differences between the practice effects in low–performers (5th and 25th percentile), median performers and high performers (75th and 95th percentile) were found for SDMT (β = 1.0–1.2 additional correct responses per repetition in the linear phase). Only small differences were observed for Finger Pinching (β = 0.3–0.7 additional successful pinches per repetition in the linear phase). For N=12997 Two Minute Walk tests, no practice effects were observed at all. CONCLUSIONS Smartphone–based tests promise to help monitor disease trajectories of MS and other chronic neurological diseases. Our findings suggest that strong practice effects in cognitive and dexterity functions have to be accounted for in order to identify disease–related changes in these domains, especially in the context of personalized health and in studies with no comparator arm. In contrast, changes in mobility may be more easily interpreted due to the absence of practice effects.


2003 ◽  
Vol 55 (2) ◽  
pp. 175
Author(s):  
C Papageorgiou ◽  
C Sfagos ◽  
KK Kosma ◽  
D Vassilopoulos ◽  
A Rabavilas ◽  
...  

2021 ◽  
Vol 162 (19) ◽  
pp. 746-753
Author(s):  
Anna Iljicsov ◽  
Dániel Bereczki ◽  
Balázs Dobi ◽  
Ferenc Oberfrank ◽  
Mónika Bálint ◽  
...  

Összefoglaló. Bevezetés: Mivel hazánkban a sclerosis multiplex gyakoriságáról, valamint életkori és nemi jellegzetességeiről az elmúlt évtizedekben – egészen 2020-ig – csak regionális jellegű felmérések készültek egy-egy centrum betegforgalma alapján, az újonnan diagnosztizált és már ismert betegek országos koreloszlásáról és annak időbeli változásairól nincsenek ismereteink. Célkitűzés: Jelen munkánkban több mint 14 000 beteg adatainak elemzésével a prevalens és incidens betegek koreloszlásának változását vizsgáljuk 2004–2016 során, és eredményeinket összevetjük az elmúlt évtizedekben közölt hazai adatokkal. Módszer: Munkacsoportunk az egészségbiztosítási pénztár anonimizált NEUROHUN adatbázisát elemezte, amely tartalmazza a 2004 és 2016 között az összes hazai, államilag finanszírozott, a fekvő- és járóbeteg-szakellátásból neurológiai diagnózissal jelentett esetet. A sclerosis multiplex BNO-kódjának előfordulása alapján korábban létrehoztuk a betegség adminisztratív definícióját, és megbecsültük a sclerosis multiplex országos prevalenciáját és incidenciáját. Eredmények: A prevalens betegek átlagéletkora 2015-ben 47,9 év, ugyanebben az évben az incidens betegek átlagéletkora 37,4 év volt. Vizsgálatunk szerint a prevalens betegek átlagéletkora szignifikánsan – évente egyötöd–egyharmad évvel (p<0,001) – emelkedik, mégpedig a nők esetében nagyobb mértékben. A nők átlagosan fél évvel idősebbek, mint a férfi páciensek (szignifikáns különbség: p = 0,002). A prevalens betegekben a legnépesebb korosztály az ötvenévesek felől a fiatalabb, 35–40 éves korosztály felé mozdul. Az incidens betegek átlagéletkora lassan, de szignifikánsan – évente átlagosan egyharmad évvel (p<0,001) – csökken. Következtetés: Eredményeink szerint az újonnan diagnosztizált sclerosis multiplexes páciensek átlagosan egyre fiatalabbak, és a prevalens betegek között is egyre fiatalabb korosztályok a legnépesebbek, de a javuló túlélés és a hosszabb élettartam miatt a prevalens betegek átlagéletkora összességében valószínűleg fokozatosan emelkedik. Orv Hetil. 2021; 162(19): 746–753. Summary. Introduction: The nationwide age and gender distribution of newly diagnosed and prevalent multiple sclerosis patients has been unknown in Hungary, as until 2020 only regional studies had been reported about the frequency and age characteristics of subjects with multiple sclerosis, based on single-center patient registries. Objective: In the present study with the analysis of over 14 000 patients, we describe the changes in age distribution of prevalent and incident subjects between 2004 and 2016 and compare our results with the data published on the subject during the last decades in Hungary. Method: We have analyzed the pseudonymized NEUROHUN database provided by the single-payer National Health Insurance Fund, that contains each claim submitted by public hospitals and outpatient services for neurologic diseases between 2004 and 2016. Using the ICD10-code of multiple sclerosis, we have previously established the administrative definition of the illness and estimated its prevalence and incidence in the country. Results: The mean age of prevalent patients was 47.9 years in 2015, whereas in the same year the mean age of incident cases was 37.4 years. The average age of prevalent patients shows a significant rise – with an annual increase of one fifth–one third year (p<0.001) – with a more pronounced increase among women. The age of women is higher by half a year (p = 0.002). The most populous age groups among prevalent subjects shift from the fifties towards the younger generations between 35–40 years of age. The average age of incident subjects slowly, but significantly decreases, with a mean annual decrease of about one third year (p<0.001). Conclusion: Our results suggest that though new patients are younger year-by-year and the most populous age groups are also younger, altogether the average age of prevalent subjects continuously increases, probably due to the longer survival and lifespan of patients with multiple sclerosis. Orv Hetil. 2021; 162(19): 746–753.


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