SUMMARY Background Little is known about health and wellbeing among patients with nephrotic syndrome (NS), despite it being a serious condition in patients with renal failure. In order to promote health, it is important that both healthcare professionals and patients are aware of the signs and symptoms of the disease. Objectives The aim was to explore patients’ experience of suffering from nephrotic syndrome. Design An inductive, qualitative method. Participants Ten adult patients with either newly diagnosed or a relapse of NS treated in a University hospital, south of Sweden from February 2016 to February 2019. Measurements Data were collected using open‐ended interviews and analysed by means of Lindseth and Norberg's phenomenological‐hermeneutical method. Results Suffering from NS meant being a stranger in an unfamiliar world of symptoms, signs and medical treatment without professional guidance or piloting, illustrated by four themes: Feeling ill and well at the same time, Being passively adherent, Being in uncertainty, and Trying to comprehend and cope. Implications for practice The result provides an in‐depth understanding of the illness experience among patients with NS and constitutes a foundation for clinical guidelines on treatment, follow‐up and health promotion. Conclusion Patients with NS end up in a state of ambiguity due to a profound knowledge deficit that causes uncertainty and a lack of self‐management. The experienced lack of professional self‐management support is partly compensated for by social support from relatives, enabling those with NS to manage everyday life in a reasonable way.

BackgroundMany pathological processes can disrupt the integrity of the glomerular capillary wall and cause a massive leakage of protein, resulting in nephrotic syndrome (NS). Clinical parameters such as age, sex, renal function, presence of diabetes, and how NS is defined influence the spectrum of underlying diseases. In this study, we examine how these parameters interact.MethodsAge, sex, hematuria, proteinuria, plasma creatinine plasma albumin levels, and final diagnosis were retrieved for all adult patients with NS as an indication for biopsy and/or massive albuminuria in conjunction with low plasma albumin from the biopsy module of the Swedish Renal Registry (SRR) between 2014 and 2019. A basic calculator was developed to demonstrate the importance of clinical presentation in relation to the likelihood of having a specific diagnosis.ResultsA total of 913 unique patients were included in the study. Diabetic nephropathy (DN) and membranous nephropathy (MN) (both found in 17% of patients) were the most common diagnoses. With a stringent definition of NS, MN and minimal change nephropathy (MCN) increased in proportion. Among the cohort as a whole, MCN was the most frequent diagnosis in women and those < 50 years of age (found in 21% and 17%, respectively). In the case of patients aged between 50 and 70 years, those with chronic kidney disease stage 4, and those with negative dipstick tests for hematuria, the most common underlying disease was DN (in 23%, 30%, and 21% of cases, respectively). Among those with high-grade hematuria (dipstick grade 3 or 4), membranoproliferative glomerulonephritis was the most common diagnosis (14%), closely followed by IgA nephropathy (13%). Focal segmental glomerulosclerosis (9.7%) was less common than in many comparable studies.ConclusionClinical parameters have a profound impact on the likelihood of different diagnoses in adult patients with NS. Differences in clinical practice and study inclusion criteria may be more important than genetic background and environmental factors when explaining differences between studies in different parts of the world.

Background: Many different pathological processes can affect the integrity of the glomerular capillary wall and cause massive leakage of protein resulting in the Nephrotic Syndrome (NS). The prognosis and response to therapy differs depending on diagnosis, but renal biopsy cannot always be performed promptly. These is insufficient knowledge to which extent clinical parameters can predict the diagnosis. Methods: Age, gender, haematuria, proteinuria, plasma creatinine, plasma albumin and final diagnosis were retrieved for all adult patients with NS as indication for biopsy or massive albuminuria in conjunction with a low plasma albumin from the biopsy module of the Swedish Renal Registry (SRR) between 2014 and 2019. A basic calculator was developed to demonstrate the importance of clinical presentations in relation to the likelihood of having a specific diagnosis.Results: 913 unique patients were included in the study. Overall membranous nephropathy (17%) was the most common diagnoses, but when studying those <50 years old or women minimal change nephropathy (21 and 17 %) was the most frequent diagnosis. When examining those between 50 and 70 years-old, those with chronic kidney disease (CKD) 4 and those with negative dipstick tests for hematuria diabetic nephropathy (23, 30 and 21 %) was the most common underlying disease. Among those with high grade hematuria (grade 3-4 on dipsticks) Membranoproliferative glomerulonephritis was most common (14%), closely followed by IgA nephropathy (13%). Focal segmental glomerulosclerosis (9.7%) was less common than in many comparable studies. Conclusions: Clinical parameters have a profound impact on the likelihood of different diagnoses in adult patients with NS. Differences in clinical practice, inclusion criteria in studies and probably genetic background are important to account for when comparing data from different parts of the world.