Living with Atypical Hemolytic Uremic Syndrome in the Netherlands: Patient and Family Perspective.

ABSTRACT: Atypical hemolytic uremic syndrome (aHUS) poses a significant health challenge due to its rarity and severity within the spectrum of thrombotic microangiopathy. Despite efforts to optimize and personalize health care for patients with aHUS, understanding the individual experiences, needs, and desires of patients with aHUS and their relatives remains limited. Here, we present a nationwide, exploratory, qualitative interview study with a direct content analysis approach. In-depth interviews and a 6-week evaluation were audio-recorded and conducted using a semistructured topic guide, based on the Institute for Positive Health (IPH) model. Analysis of 10 interviews involving 6 patients with aHUS and 13 relatives revealed the prevalence of long-term disease symptoms in adult patients, notably f

SUBMITTER: Bouwmeester RN 

PROVIDER: S-EPMC11284443 | biostudies-literature | 2024 Jul

REPOSITORIES: biostudies-literature