Patient perspectives on neuromyelitis optica spectrum disorders: Data from the PatientsLikeMe online community

Eaneff, Stephanie; Wang, Victor; Hanger, Morgan; Lévy, Michaël; Mealy, Maureen A.; Brandt, Alexander U.; Eek, Daniel; Ratchford, John N.; Nyberg, Fredrik; Goodall, Jonathan L.; Wicks, Paul

doi:10.1016/j.msard.2017.07.014

Cited by 52 publications

(58 citation statements)

References 29 publications

(31 reference statements)

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“…These themes are concordant with those of previous studies. 22,23,41 Of interest, patients receiving nonspecific immune-suppressing treatments tended to rate their regimens more negatively, whereas those on target-specific treatments (e.g., biologics) rated their treatments more positively. Impact of NMO on QoL extended beyond physical and emotional costs; respondents reported a high financial burden, particularly for prescription medicines, travel costs, hospitalization, and specialist care.…”

Section: Discussionmentioning

confidence: 99%

“…[18][19][20][21] By comparison, few studies have systematically examined the impact of NMOSD on quality of life (QoL) in well-characterized cohorts. [22][23][24][25] Therefore, The Guthy-Jackson Charitable Foundation, Alexion Pharmaceuticals, Chugai Pharmaceutical Co., MedImmune/Viela Bio, and Ipsos Public Affairs conducted a cooperative study of NMOSD patient experience and QoL. Through an interactive survey format, patient-reported clinical, demographic, and experiential data were systematically collected from geographically dispersed patients with NMOSD across North America.…”

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confidence: 99%

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Neuromyelitis optica spectrum disorder

Beekman

Keisler

Pedraza

et al. 2019

Neurol Neuroimmunol Neuroinflamm

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ObjectiveTo gain insights into NMOSD disease impact, which may negatively affect QoL of patients, their families, and social network.MethodsThe current study used validated instruments to assess physical, emotional, and socioeconomic burden of NMOSD on QoL among 193 patients.ResultsA majority of patients reported an initial diagnosis of a disease other than NMOSD. Overall, two-thirds of patients reported NMOSD as having a strong negative impact on physical health (Short Form-36 [SF-36] score 27.1 ± 39.1), whereas emotional well-being was relatively unimpaired on average (SF-36 score 54.0 ± 44.9). A subset of patients reported having the highest category of emotional health despite worse physical health or financial burden, suggesting psychological resilience. Pain (r = 0.61) and bowel/bladder dysfunction (r = 0.41) imposed the greatest negative physical impact on overall QoL. In turn, ability to work correlated inversely with worsened health (r = −0.68). Increased pain, reduced sexual function, inability to work, and reduced QoL had greatest negative impacts on emotional well-being. Dissatisfaction with treatment options and economic burden correlated inversely with QoL.ConclusionsCollectively, the current findings advance the understanding of physical, emotional, social, and financial tolls imposed by NMOSD. These insights offer potential ways to enhance QoL by managing pain, enhancing family and social networks, and facilitating active employment.

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Section: Discussionmentioning

confidence: 99%

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confidence: 99%

Neuromyelitis optica spectrum disorder

Beekman

Keisler

Pedraza

et al. 2019

Neurol Neuroimmunol Neuroinflamm

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“…Online health communities and research networks allow patients to connect with each other, share experiences, and learn more about how to manage their condition effectively [7,10]. In addition to the value they bring to patients, online health communities and research networks can also provide important insights into chronic diseases to improve health care [11][12][13].…”

Section: Introductionmentioning

confidence: 99%

Characteristics and Symptom Severity of Patients Reporting Systemic Lupus Erythematosus in the PatientsLikeMe Online Health Community: A Retrospective Observational Study

et al. 2020

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Introduction: Online health communities and research networks such as PatientsLikeMe (PLM) capture patient perspectives of diseases, including systemic lupus erythematosus (SLE). We performed a retrospective observational study of data provided by patients in the PLM SLE community to characterize demographics, clinical characteristics, patient experience, and symptom impact. Methods: Adults who registered with PLM in 2011-2017 and reported SLE diagnosis and treatment with one or more SLE-related drug (antimalarials, immunosuppressives, corticosteroids, calcineurin inhibitors, or biologics) were included in the analysis. Information reported within 30 days from PLM registration was used to assess patient eligibility; demographics and clinical characteristics; and primary outcome measures of SLE treatments, symptoms, primary lupus manifestations, and comorbidities. Results: Among 21,101 PLM members included in this analysis, median ages at registration, onset of SLE symptoms, and SLE diagnosis were 46 years (interquartile range [IQR] 38-53, n = 21,101), 30 years (IQR 21-39; n = 6489), and 36 years (IQR 27-44; n = 6936), respectively. Most patients were female (96.8%, n = 20,370). Country of residence was reported by 19,502 patients (92.4%), of whom 18,491 (94.8%) were US residents. Race was recorded by 17,994 patients (85.3%), of whom 67.8% were white and 22.4% were black/African American. Patients reported a mean of 2.2 SLErelated medications, including antimalarials (83.8%), corticosteroids (78.8%), immunosuppressives (32.3%), and biologics (9.4%). Fatigue, pain, and joint pain were rated as moderate or severe by at least 80% of patients who reported these symptoms. Reported primary lupus manifestations and comorbidities included Enhanced Digital Features To view enhanced digital features for this article go to https://doi.org/10.6084/ m9.figshare.11591982.

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“…For example, a study conducted in an online community with 234 patients, most of them from the United States, reported that 45% of them had moderate or total disability due to pain and/or paresthesia, and 35% had moderate or total visual impairment. Although there were cognitive symptoms (thought and memory), they were less severe than physical symptoms, which are commonly associated with moderate to total disability (11) .…”

Section: Discussionmentioning

confidence: 92%

Gestão do cuidado de um paciente com Doença de Devic na Atenção Primária à Saúde

Fabrizzio

Júnior

Cunha

et al. 2018

Rev. esc. enferm. USP

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Patient perspectives on neuromyelitis optica spectrum disorders: Data from the PatientsLikeMe online community

Abstract: This analysis underscores the challenges of living with fatigue, pain, stiffness/spasticity, and visual difficulties, prevalent NMOSD symptoms among members of the PLM community.

Cited by 52 publications

References 29 publications

Neuromyelitis optica spectrum disorder

Neuromyelitis optica spectrum disorder

Characteristics and Symptom Severity of Patients Reporting Systemic Lupus Erythematosus in the PatientsLikeMe Online Health Community: A Retrospective Observational Study

Gestão do cuidado de um paciente com Doença de Devic na Atenção Primária à Saúde

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