Journal of Allergy and Clinical Immunology
Enhanced Medical Support for Primary Immunodeficiency Disorders (PIDD): A Patient-guided Intervention to Ensure Patient Engagement During a Global Pandemic and Beyond
Section snippets
Rationale
An educational program on Primary Immunodeficiency Disorders (PIDD) was informed by survey findings of 315 Immune Deficiency Foundation patients. Developed by immunologists and patient stakeholders at the American Academy of Allergy, Asthma & Immunology, the educational program included four activities: Module 1 (PIDD diagnosis), Module 2 (Telehealth in PIDD), and two simulation cases.
Methods
The program’s ethics-approved evaluation assessed impact on allergist/immunologists’ (specialists) competencies to promptly diagnose and treat PIDD patients. Pre-/post-activity questionnaires included self-assessment and multiple-choice items (compared using McNamar tests) and open-ended qualitative questions (analyzed thematically). The 30-day follow-up assessed specialists’ clinical behaviors, practice changes and barriers to change.
Results
Pre/post questionnaires were completed by 148, 125, 76 and 100 specialists for Module1-Diagnosis/Module2-Telehealth/Case Study1/Case Study2, respectively (follow-up n=57/55/40/51). Pre/post comparison showed significant improvements in most items: identification of Interstitial Lung Disease and Bronchiectasis (pre:52%;post:72%;Δ:20%;p<0.001) and unusual malignancies (pre:71%;post:88%;Δ17%;p<0.001); patients requiring in-person consultations (pre:43%;post:81%;Δ38%;p<0.001); recognition of mental
Conclusions
This patient-informed educational program showed measurable improvement in PIDD symptom recognition, effective telehealth visits, and determining treatment/monitoring plans among specialists. Findings could inform programs incorporating patient perspectives into their educational content.