Understanding the Support Needs of People with Autosomal Dominant Polycystic Kidney Disease: A Qualitative Phenomenological Descriptive Study.

Abstract

Introduction: Autosomal dominant polycystic kidney disease (ADPKD) is a prevalent hereditary kidney disease and the fourth most common cause of kidney failure. Patients may be aware of their condition from an early age or discover it unexpectedly, with varying levels of familial knowledge about the disease. This chronic condition presents significant challenges for healthcare professionals. The study aimed to investigate how people with ADPKD experience their participation in a dedicated ADPKD clinic and to investigate their support needs in managing their disease in everyday life.

Methods: A qualitative phenomenological descriptive study was conducted, involving semi-structured telephone interviews with patients who attended a newly established dedicated ADPKD clinic between March and April 2023. The data were analyzed using Malterud's principles of systematic text condensation.

Results: In total, 18 out of 22 patients agreed to participate in the interviews. Six themes emerged from the interviews. Participants expressed feelings of uncertainty about their future and highlighted the necessity for personalized care tailored to their individual circumstances. They reported challenges in coping with emotions associated with the disease and sought assistance in making difficult decisions. Maintaining control over their health and illness was a significant theme, alongside a desire for increased knowledge about their condition.

Conclusion: Our study supports existing knowledge in this area. In this study, the participants experienced satisfaction with the dedicated ADPKD clinic, feeling well informed, listened to, and more at ease after the check-up. Investing in a dedicated ADPKD clinic could help alleviate the uncertainty that many people with ADPKD experience.