Illness Experience in Nephrotic Syndrome.

Background: Most patients with kidney disease have different degrees of proteinuria. Heavy proteinuria causes nephrotic syndrome. The incidences of nephrotic syndrome in adults are approximately three per 100 000 persons. Although if nephrotic syndrome is rare, it is a serious clinical condition. Little is known about health and wellbeing among patients with nephrotic syndrome. It is important for both healthcare professionals and the individual to be able to pay attention to signs and symptoms of illness and disease.

Objectives: To explore patients experience of suffering from nephrotic syndrome.

Methods: Eight adult patients (4 men and 4 female) age 30-90 years who became ill in nephrotic syndrome between 2016 and 2018 at Skane University Hospital, Lund Sweden were included in the study. Data was collected using open-ended interviews and analyzed by the use of the phenomenological hermeneutical method of Lindseth and Norberg.

Results: Three main themes reflected experience of illness in nephrotic syndrome: It doesn’t make sense; they have a kidney disease but the symptoms are elsewhere. Knowledge deficit; not knowing, not interested, not concerned. Uncertainty; patients do not know if they will become healthy or end up in dialysis or kidney transplantation in the future.

Conclusion/Application to practice: The result provides in-depth understanding of signs and symptoms among patients with nephrotic syndrome and can constitutes a foundation for clinical guidelines regarding treatment, follow-up and health promotion