Patient Perspectives on Adaptation to Inborn Errors of Immunity

Abstract

IntroductionHealthcare providers aim to facilitate adaptation. However, research is limited on how individuals with inborn errors of immunity (IEI) adapt. We aimed to fill this gap by conducting semi-structured interviews of participants with IEI regarding their experiences of adaptation to their illness. MethodsWe contacted 35 participants with IEI who were 18–40 years old, had above-average scores on an adaptation scale (better adaptation), and reported at least mild anxiety or depression by PROMIS 29 Profile v2.1. Twenty (57.1%) completed semi-structured interviews, which included questions about meaning making, mastery, and mental health. Interviews were recorded and transcribed. Three transcripts were reviewed by two researchers to develop a codebook. All interviews will be analyzed using an inductive, semantic thematic approach. ResultsInterviewees were 32 years old on average and 65% were female. Diagnoses included GATA2 deficiency (n = 5), common variable immune deficiency (n = 5), and others. Seven (35%) participants underwent hematopoietic stem cell transplant.Codes related to meaning making included sympathy for and desire to help others (“My hope is that they find hope through my story.”). Many codes related to mastery described discerning what can and cannot be controlled. Additional codes included sources of anxiety and depression, connections between physical and mental health, and the desire for clinicians to ask about mental health.Many codes related to support. Participants valued when others met their needs (“They came and visited me whenever I was in [the] hospital…That really helped.”). They also described unhelpful relationships with individuals who minimized their symptoms (“No matter how. sick you actually are, they just won’t believe it.”).Other codes included comparison to healthy peers (“That’s something I have to think about and. most people don’t have to.”), attitudes (“I can be so much more than the person that was just a victim to an illness.”), key factors in adaptation (e.g., disrupted goals, symptom severity), and learning about one’s body and how to explain one’s illness. DiscussionAdaptation to IEI involves many factors. Further analysis will explore themes and identify targets for facilitating patient adaptation, such as improving mental health and identifying support needs.