The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
In August 2021, IDF, the American Academy of Allergy, Asthma, and Immunology (AAAAI), and the AXDEV Group launched a three-module online course for healthcare providers called “Providing Enhanced Medical Support for Patients with Primary Immunodeficiency Disorders (PIDD): A Patient-Guided Intervention to Ensure Patient Engagement During a Global Pandemic and Beyond.” The course was recently awarded the Alliance for Continuing Education in the Health Professions’ 2023 William Campbell Felch Award for Research in Continuing Education. The Felch Award is given to outstanding research projects in the continuing education space.
Project leaders rooted the course in research. To design it, they surveyed 315 patients with primary immunodeficiency (PI) to identify issues related to overall provider knowledge of PI symptoms and diagnosis, provider-patient communication, and telehealth practices. The insights from this survey informed both the learning objectives and the content of the course modules. The modules include:
By having providers take a pre-assessment and then post-assessments after each module, project leaders were able to measure how effective the modules were in addressing the gaps originally identified in the patient survey. The module post-assessments showed that participants’ knowledge significantly increased in recognizing specific PI symptoms, selecting patients for telehealth visits, addressing mental health and co-occurring conditions during telehealth visits, and selecting an appropriate treatment plan for a patient with PI.
In addition, participants completed another post-assessment at least 30 days after completing the modules to measure their enduring knowledge and practice changes. The majority of participants reported that they continue to ask patients about their full range of symptoms, address other factors impacting health during telehealth visits, and create an action plan with patients at the end of each visit.
The award-winning course was supported by Pfizer and is available online for free until June 30, 2023. Health professionals can earn up to two continuing medical education (CME) or continuing education (CE) credits for completing all of the course components and modules.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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