Background: PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?” Objective: Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes. Methods: Almost 7,000 members from six PatientsLikeMe communities (amyotrophic lateral sclerosis [ALS], Multiple Sclerosis [MS], Parkinson’s Disease, human immunodeficiency virus [HIV], fibromyalgia, and mood disorders) were sent a survey invitation using an internal survey tool (PatientsLikeMe Lens). Results: Complete responses were received from 1323 participants (19% of invited members). Between-group demographics varied according to disease community. Users perceived the greatest benefit in learning about a symptom they had experienced; 72% (952 of 1323) rated the site “moderately” or “very helpful.” Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit. Conclusions: We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms. [J Med Internet Res 2010;12(2):e19]

http://www.geneticalliance.org/sites/default/files/sharing_health_data_heywood.pdf

Sharing health data for better outcomes on PatientsLikeMe.

Information processing characteristics in subtypes of multiple sclerosis

Bowel management related quality of life in people with multiple sclerosis: Psychometric evaluation of the QoL-BM measure

Bowel dysfunction is a common and disabling symptom of multiple sclerosis (MS) that contributes to poor quality of life in affected persons. Despite the high prevalence of bowel dysfunction in MS, there is a paucity of information reported in the literature about this common problem for this

Comparison of Prevalence, Related Medical History, Symptoms, and Interventions Regarding Bowel Dysfunction in Persons With Multiple Sclerosis

This study intended to describe general personality functioning in patients with a progressive course of multiple sclerosis. 55 consecutive rehabilitation inpatients with progressive course of multiple sclerosis were assessed with a multimethod test battery: the Expanded Disability Status Scale, the Beck Depression Inventory, the State-Trait Anxiety Inventory, the Rosenberg Self-esteem Scale, and the Rorschach Test administered and scored with Comprehensive System. The control group comprised 55 healthy participants with similar sociodemographic characteristics. Specific differences were found for both cognitive and affective aspects, as the patients with progressive course of multiple sclerosis had less positive self-image, less effective mediation processing, and an affective approach to reality. Present data illustrated the usefulness of examining patients with a progressive course of multiple sclerosis to identify abilities and difficulties in cognitive and affective patterns, and support better adaptation to relationships and the environment.

Personality functioning in patients with a progressive course of multiple sclerosis.

Cognitive deficits are among the most harmful symptoms in multiple sclerosis (MS). Neuropsychological assessment methods have been extensively developed in MS, but rehabilitation of cognition is still in its infancy. At the Masku Neurological Rehabilitation Centre, we have developed 3 models of neuropsychological group rehabilitation in MS. Information/family weekends for MS patients who are concerned about cognitive deficits 1-week inpatient cognitive rehabilitation courses for MS patients and their spouses 3-week inpatient cognitive rehabilitation courses for MS patients We used an adaptational approach to help participants live with cognitive impairments. Instead of retraining affected cognitive functions, we tried to help patients find better ways of coping with existing cognitive deficits in daily life. The course consisted of information at a general and at an individual level, neuropsychological evaluation and feedback, individual counseling, and group meetings. We evaluated the participan...

Adaptational Approach to Cognitive Rehabilitation in Multiple Sclerosis: Description of Three Models of Care

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Adaptational Approach to Cognitive Rehabilitation in Multiple Sclerosis: Description of Three Models of Care