Quality of life in patients with common variable immunodeficiency

Abstract

INTRODUCTION: Inborn errors of immunity are caused by genetic defects in the immune response. Antibody defects are the most frequent, and although their prognosis has improved, patients experience several limitations. This study aimed to assess these patients’ quality of life. METHOD: The study will assess patients cared for at CEUFMABC and UNIFESP using the CVID_QoL questionnaires administered through Forms after participants sign an informed consent form. Scores will be compared with data from the Brazilian population and from patients with chronic diseases. Response options use a five-point scale ranging from 0=never to 4=always, with higher values indicating greater disability. The overall CVID_QoL score and the score for each domain are defined as the sum of all item scores transformed into a percentage of the maximum possible score. RESULTS: Patient responses showed the following: sadness, 2/5 sometimes and 1/5 often; anger, 2/5 rarely and 2/5 sometimes; concern about the future, 3/5 sometimes and 1/5 often; fear of dying, 2/5 sometimes, 1/5 rarely, and 1/5 often; shame, 2/5 rarely and 2/5 sometimes; social isolation, 4/5; changes in sexual life, 4/5; difficulties in interpersonal relationships, 3/5; avoiding leaving home because of cough, 4/5; difficulty studying or working, 2/5 sometimes and 2/5 often; need for help with personal care, 3/5; difficulty with leisure activities, 4/5; tiredness, 2/5 sometimes and 2/5 often; cough, sputum, joint pain, and diarrhea, often; discomfort with immunoglobulin treatment, 3/5; and fear of adverse treatment reactions, 4/5. DISCUSSION: Despite improvements, patients experience morbidities that affect their quality of life. This analysis is extremely important because few studies on the topic have been conducted in Brazil. CONCLUSION: CVID affects multiple areas of patients’ lives, including emotional, social, and functional domains, as well as overall well-being.