Patient Insights
Communities | Patient Insights
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Understanding the Impact of Stigma in an Online Community of Hidradenitis Suppurativa Patients
Background People with hidradenitis suppurativa (HS) often experience feelings of stigma.1 This study aimed to assess how they feel about the impact of HS on their sense of self and how they think others perceive them. Objective To evaluate sources of stigma in HS. To evaluate the dynamics and impact of internal and external stigma […]
Communities | Patient Insights
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Empowering Primary Biliary Cholangitis Patients with Peer Support and Education
Purpose To share a successful example of building a rare disease social network by creating a scalable, connectedcommunity and making patient education readily accessible. Background MyHealthTeam (MHT) has created 61 social networks for people living with chronic health conditions, including 14 rare diseases. The social networks provide individuals living with these conditions an opportunity to […]
Communities | Patient Insights
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Patient Reported Impact of Pulmonary Arterial Hypertension and Desired Treatment Outcomes
Background Patients diagnosed with the rare disease of PAH must deal not only with the physical aspects of PAH, but also the mental health, social, and economic ramifications of this life-changing disease. Understanding the holistic impact of PAH on patients along with patient needs is crucial to enabling them to live more fulfilling lives.
Communities | Patient Insights
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Lung Cancer Patient Reported Experiences With Biomarker Testing
Introduction Research was undertaken to better understand awareness and experiences with biomarker testing among patients living with Non-Small Cell Lung Cancer (NSCLC). Additionally, research sought to understand potential health inequities in terms of access to biomarker testing.
Communities | Patient Insights
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Patient Reported Attitudes Towards Multiple Sclerosis Treatment
Background MS is a progressive disease that can have a devastating impact on quality of life. Yet obstacles exist for getting patients to start on or stay on a DMT to help slow progression. Understanding patient concerns and highlighting the benefits of DMTs can enable neurologists to help their patients overcome usage barriers. Objectives Research […]
Communities | Patient Insights
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Patient-Reported Health Inequities Among Breast Cancer Patients
Background Equal access to and quality of care are critical for creating positive outcomes for women living withbreast cancer. Despite increased awareness of health outcome disparities in the US, Black and Latina women still experience unique challenges in their breast cancer journey. Objectives To better understand potential disparities in healthcare quality, affordability, and access based […]
Communities | Patient Insights
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Understanding the Patient Perspective in Living with and Treating Spondyloarthritis
Background Spondyloarthritis (SpA), the group of conditions that includes ankylosing spondylitis, psoriatic arthritis, and non-radiographic axial spondyloarthritis, among others, can lead to symptoms of pain, stiffness, and swelling. The burden of disease can affect patients’ quality of life. Objectives Patient research was undertaken to explore the impact of spondyloarthritis on quality of life, patients’ ability […]
Communities | Patient Insights
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Insights from thousands of people with MS Uncover Adverse Effects Lead to Nonadherence
Social listening pinpoints adverse events as a key factor in patient dropout and reveals a critical opportunity for brand managers to provide support.