scholarly journals Internet Usage by Patients with Multiple Sclerosis: Implications to Participatory Medicine and Personalized Healthcare

2010 ◽  
Vol 2010 ◽  
pp. 1-7 ◽  
Author(s):  
Izabella Lejbkowicz ◽  
Tamar Paperna ◽  
Nili Stein ◽  
Sara Dishon ◽  
Ariel Miller

Online health information and services for patients were suggested to improve symptom management and treatment adherence, thereby contributing to healthcare optimization. This paper aimed to characterize multiple sclerosis (MS) patients Internet usage. Information regarding browsing habits, Internet reliability, and the medical team's attitude to information collected online was obtained by questionnaires from MS patients. Data was compared between nonbrowsers, browsers on MS topics, and browsers on non-MS topics only. From the 96 patients recruited, 61 (63.5%) performed MS-related searches. The most viewed topics were “understanding the disease” and “treatments”. Patients reported that the information helped coping with MS and assured them of the appropriateness of their therapy. Shorter disease duration was correlated with higher Internet activity. Disabled patients were more interested in online interaction with specialists and support groups. This paper suggests that MS patients benefit from online information, and it emphasizes the importance of resources tailored to patients needs.

Author(s):  
Gizell Green ◽  
Riki Tesler ◽  
Cochava Sharon

The Internet and social media are crucial platforms for health information. Factors such as the efficiency of online health information, the outcomes of seeking online health information and the awareness of reliable sources have become increasingly important for the elderly during the COVID-19 pandemic. This study aimed to examine differences between elderly individuals’ income above and below the average monthly wage in relation to their online health information efficiency and the outcomes of seeking online health information; to evaluate types of online information sources with online health information efficiency and the outcomes of seeking online health information; and to explore online health information efficiency as a mediator between health status and awareness of online sources. A cross-sectional study design was conducted with 336 elderly participants age 65 or older. The participants volunteered to complete a questionnaire. No differences were found between the two groups regarding efficiency in retrieving health information from official online health sites and Google. Perceived efficiency mediated health status and awareness of online sources. In these challenging times, it is important to provide a tailor-made education strategy plan for reliable sources of online health information for the elderly, in order to enhance their technology safety skills. It is also important to explore other mediating variables between health status and awareness of online sources.


2021 ◽  
Vol 27 (Supplement_1) ◽  
pp. S52-S53
Author(s):  
Jooyoung Moon ◽  
Hanna Moon

Abstract Background In 2018, the American College of Gastroenterology published guidelines for Crohn’s disease management that emphasized the importance of addressing the patient’s quality of life (QOL). Due to the unique challenges that they face, afflicted patients and their families benefit from support groups that provide psychosocial support. Hospitals have traditionally preferred in-person support group meetings, but there has recently been a great increase in the need for online meetings amidst the COVID-19 pandemic. With increasing usage of the Internet for health advice and assistance, it is important to assess the availability of information on support groups online. Methods Two independent investigators queried the terms “Crohn’s support group” using the Google search engine. The first 100 websites were analyzed and categorized into either informational websites (IW) or professional websites (PW) depending on their association. The mode of support group meetings was categorized as either online or in-person. Websites that included outdated events, were inaccessible, did not specify the mode of meeting, required additional contact, or were irrelevant were excluded. Statistical analyses were performed using the chi-squared test of independence with significance level at p<0.05. Results A total of 56 websites (33 IW, 23 PW) met our inclusion criteria. IW offered online meetings more often than PW (60.6% and 39.1%, respectively; p=0.11). In contrast, PW offered in-person meetings more often than IW (73.9% and 69.7%, respectively; p=0.73). Excluded websites (30 IW, 14 PW) were further analyzed for their reason for elimination. For IW, the most frequent causes of exclusion in descending order were as follows: irrelevance (30.0%), outdated (26.7%), inaccessible (20.0%), did not specify the mode of meeting (13.3%), and redirected for further information (10.0%). Listing of outdated sessions was the most common reason for exclusion of PW from the study (57.1%), and the proportion was significantly higher than IW (26.7%) (p=0.01). Conclusion Crohn’s disease patients face unique challenges that require special attention. Support groups are an important means of alleviating stress, depression, and anxiety in order to improve their QOL. Yet, due to the COVID-19 social distancing policies, many are refrained from participating in in-person sessions. This study illustrates that more online support group meetings are needed and that professional websites should improve on making regular updates for future meeting sessions.


2007 ◽  
Vol 13 (3) ◽  
pp. 332-335 ◽  
Author(s):  
M. Nakamura ◽  
I. Nakashima ◽  
S. Sato ◽  
I. Miyazawa ◽  
K. Fujihara ◽  
...  

Of 23 neuromyelitis optica (NMO) cases, we found two cases with oligoclonal IgG bands (OBs). Both patients were positive for NMO-IgG. Their common features were long disease duration and co-existing autoimmune diseases (myasthenia gravis and sicca syndrome). Although OBs are mostly negative in NMO, which distinguishes it from multiple sclerosis (MS), they can be positive by long-standing autoimmunity, which may not be directly related to NMO. Multiple Sclerosis 2007; 13: 332-335. http://msj.sagepub.com


2021 ◽  
Author(s):  
Anagha Kulkarni ◽  
Mike Wong ◽  
Tejasvi Belsare ◽  
Risha Shah ◽  
Diana Yu Yu ◽  
...  

BACKGROUND The Internet has become a major source of health information especially for adolescents and young adults. Unfortunately, inaccurate, incomplete or outdated health information is widespread online. Often adolescents and young adults turn to authoritative websites such as the student health center (SHC) website of the university they are attending to obtain reliable health information. Although most on-campus SHC clinics comply with the American College Health Association (ACHA) standards, their websites are not subject to any standards or code of conduct. In the absence of quality standards or guidelines, the monitoring and compliance processes do not exist for SHC websites either. As such, there is no oversight on the health information published on the SHC websites by any central governing body. OBJECTIVE Our objective is to enable researchers to monitor online information quality at scale. We have created a tool that can efficiently quantify the quality of information posted on SHC websites about a health topic. Specifically, this quantitative tool provides information on quality, such as reading ease, coverage of the topic, and the degree of fact-based objective information. METHODS Our cross-functional team has designed and developed an open-source software, QMOHI: Quantitative Measures of Online Health Information, using the Agile software development methodology. The QMOHI tool finds the SHC website and gathers information on the specific health topic of interest from a prespecified list of university websites. Based on the retrieved text, the tool computes eight different quality metrics. The QMOHI tool is a fully automated tool that is designed to be scalable, generalizable, and robust. RESULTS The first empirical evaluation shows that the QMOHI tool is highly scalable and substantially more efficient than the manual approach of assessing online information quality. The second experimental results demonstrate QMOHI’s ability to work effectively with starkly different health topics (COVID, Cancer, LARC, and Condom) and with narrowly focused topics (hormonal IUD and copper IUD); thereby establishing the generalizability and versatility of the tool. The results from the last experiment demonstrate that QMOHI is not vulnerable to typical structural changes that SHC websites may undergo (e.g. URL changes) over a long period of time. QMOHI is able to support longitudinal studies by being robust to such website changes. CONCLUSIONS QMOHI allows public health researchers and practitioners to conduct large-scale studies of SHC websites that were previously too time intensive. The capability to generalize broadly or focus narrowly allows for wide applications of QMOHI, equipping researchers to study both mainstream and underexplored health topics. QMOHI’s ability to robustly analyze SHC websites periodically facilitates longitudinal investigations and monitor SHC progress. QMOHI serves as a launching pad for our future work that aims to develop a broadly applicable public health tool for online health information studies with potential applications far beyond SHC websites.


BMJ Open ◽  
2018 ◽  
Vol 8 (8) ◽  
pp. e024188
Author(s):  
Maureen Seguin ◽  
Laura Hall ◽  
Helen Atherton ◽  
Rebecca Barnes ◽  
Geraldine Leydon ◽  
...  

IntroductionMany patients now turn to the internet as a resource for healthcare information and advice. However, patients’ use of the internet to manage their health has been positioned as a potential source of strain on the doctor–patient relationship in primary care. The current evidence about what happens when internet-derived health information is introduced during consultations has relied on qualitative data derived from interview or questionnaire studies. The ‘Harnessing resources from the internet to maximise outcomes from GP consultations (HaRI)’ study combines questionnaire, interview and video-recorded consultation data to address this issue more fully.Methods and analysisThree data collection methods are employed: preconsultation patient questionnaires, video-recorded consultations between general practitioners (GP) and patients, and semistructured interviews with GPs and patients. We seek to recruit 10 GPs practising in Southeast England. We aim to collect up to 30 patient questionnaires and video-recorded consultations per GP, yielding up to 300. Up to 30 patients (approximately three per participating GP) will be selected for interviews sampled for a wide range of sociodemographic characteristics, and a variety of ways the use of, or information from, the internet was present or absent during their consultation. We will interview all 10 participating GPs about their views of online health information, reflecting on their own usage of online information during consultations and their patients’ references to online health information. Descriptive, conversation and thematic analysis will be used respectively for the patient questionnaires, video-recorded consultations and interviews.Ethics and disseminationEthical approval has been granted by the London–Camden & Kings Cross Research Ethics Committee. Alongside journal publications, dissemination activities include the creation of a toolkit to be shared with patients and doctors, to guide discussions of material from the internet in consultations.


2013 ◽  
Vol 71 (5) ◽  
pp. 275-279 ◽  
Author(s):  
Denis Bernardi Bichuetti ◽  
Enedina Maria Lobato de Oliveira ◽  
Nilton Amorin de Souza ◽  
Mar Tintoré ◽  
Alberto Alain Gabbai

Although neuromyelitis optica (NMO) is known to be a more severe disease than relapsing-remitting multiple sclerosis (RRMS), few studies comparing both conditions in a single center have been done.Methods:Comparison of our previously published cohort of 41 NMO patients with 177 RRMS patients followed in the same center, from 1994 to 2007.Results:Mean age of onset was 32.6 for NMO and 30.2 for RRMS (p=0.2062) with mean disease duration of 7.4 years for NMO and 10.3 years for RRMS. Patients with NMO had a higher annualized relapse rate (1.0 versus 0.8, p=0.0013) and progression index (0.9 versus 0.6, p≪0.0001), with more patients reaching expanded disability status scale (EDSS) 6.0 (39 versus 17%, p=0.0036). The odds ratio for reaching EDSS 6.0 and being deceased due to NMO in comparison to RRMS were, respectively, 3.14 and 12.15.Conclusion:Patients with NMO have a more severe disease than patients with RRMS, including higher risk of dying of a demyelinating disease.


2005 ◽  
Vol 11 (3) ◽  
pp. 338-342 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Olympia Hadjimichael ◽  
Timothy Vollmer

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a multiple sclerosis (MS) self-report registry with more than 24 000 participants. Participants report disability status upon enrolment, and semi-annually using Performance Scales (PS), Patient Determined Disease Steps (PDDS) and a pain question. In November 2000 and 2001, we also collected the Pain Effects Scale (PES). Our aim was to validate the NARCOMS pain question using the PES as our criterion measure. We measured correlations between the pain question and age, disease duration, various PS subscales and PDDS to assess construct validity. We correlated pain question responses in participants who reported no change in PDSS or the PS subscales between questionnaires to determine test—retest reliability. We measured responsiveness in participants who reported a substantial change in the sensory, spasticity PS subscales. The correlation between the pain question and PES was r=0.61 in November 2000, and r=0.64 in November 2001 (both P<0.0001). Correlations between the pain question and age, and disease duration were low, indicating divergent validity. Correlations between the pain question and spasticity, sensory PS subscales and PDSS were moderate, indicating convergent validity. Test—retest reliability was r=0.84 (P<0.0001). Responsiveness was 70.7%. The pain question is a valid self-report measure of pain in MS.


2018 ◽  
Vol 26 (2) ◽  
pp. 210-219 ◽  
Author(s):  
Heidi Högel ◽  
Eero Rissanen ◽  
Christian Barro ◽  
Markus Matilainen ◽  
Marjo Nylund ◽  
...  

Background: Cerebrospinal fluid (CSF) levels of two soluble biomarkers, glial fibrillary acidic protein (GFAP) and neurofilament light chain (NfL), have been shown to associate with multiple sclerosis (MS) disease progression. Now, both biomarkers can be detected reliably in serum, and importantly, their serum levels correlate well with their CSF levels. Objective: To evaluate the usability of serum GFAP measurement as a biomarker of progressive disease and disease severity in MS. Methods: Clinical course, Expanded Disability Status Scale (EDSS), disease duration, patient age and magnetic resonance imaging (MRI) parameters were reviewed in 79 MS patients in this cross-sectional hospital-based study. Serum samples were collected for measurement of GFAP and NfL concentrations using single molecule array (Simoa) assay. A cohort of healthy controls was evaluated for comparison. Results: Higher serum concentrations of both GFAP and NfL were associated with higher EDSS, older age, longer disease duration, progressive disease course and MRI pathology. Conclusion: Earlier studies have demonstrated that GFAP, unlike NfL, is not increased in association with acute focal inflammation-related nervous system damage. Our work suggests that GFAP serum level associates with disease progression in MS and could potentially serve as an easily measurable biomarker of central nervous system (CNS) pathology related to disease progression in MS.


1990 ◽  
pp. 23-31
Author(s):  
Paolo Livrea ◽  
Maria Trojano ◽  
Isabella Laura Simone ◽  
Carlo Avolio ◽  
Francesca De Robertis ◽  
...  

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