Patients with ANCA-associated vasculitis' experiences of informational needs: A qualitative interview study

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  • Tina Thorborg
  • Per Ivarsen
  • Dorthe Johanne Lacroise, Aarhus University, Denmark
  • Astrid Overgaard Päevatalu, Department of Otorhinolaryngology, Lillebaelt Hospital, Vejle, Denmark
  • Camilla Bader Breer, VIA University College, Denmark
  • Jeanette Finderup

Background: Anti-neutrophil cytoplasmic antibody-associated vasculitis is a rare chronic autoimmune organ- and life-threatening disease primarily affecting kidneys and lungs. The clinical symptoms of the disease vary considerably, and patients may display varied symptoms. Healthcare professionals believe that the patients are well informed about their disease and symptoms of relapse. However, some patients contact the Department later than expected after the debut of symptoms of relapse. Aim: To investigate patients' experiences of informational needs living with anti-neutrophil cytoplasmic antibody-associated vasculitis. Design: Individual semi-structured interviews by telephone due to the COVID-19 pandemic. Data were analysed through systematic text condensation. The Consolidated Criteria for Reporting Qualitative Research checklist was used. Participants: Ten patients were diagnosed with anti-neutrophil cytoplasmic antibodies-associated vasculitis. Approach: A qualitative study. Findings: We identified five themes: ʻNeed oral and written information in a combination’, ʻNeed information about living with the disease’, ʻNeed information about symptoms and indications of relapse’, ʻNeed psychological support to receive information about the disease’ and ʻNeed a peer for sharing information’. Conclusion: To increase patients' self-management skills, healthcare professionals should focus on three areas of information: ‘Provision of information’, ‘Content of the information’ and ‘Learning prerequisites’. This study indicates that patients have an increased need for more and clear information about the disease as well as psychological support to react accurately to symptoms that may lead to relapse. Most of the patients had limited knowledge, which indicates that patients need a better understanding of their disease, symptoms and relapse.

Original languageEnglish
JournalJournal of Renal Care
Pages (from-to)84-92
Number of pages9
Publication statusPublished - Jun 2022

    Research areas

  • anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis, informational needs, patient education, patient perspective, self-management, SYSTEMIC-LUPUS-ERYTHEMATOSUS, MANAGEMENT, RISK-FACTORS, EMPOWERMENT, ANTINEUTROPHIL CYTOPLASMIC ANTIBODY, RELAPSE, RECOMMENDATIONS, DISEASE, HEALTH, Recurrence, Pandemics, Humans, COVID-19, Qualitative Research, Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis

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