Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported Outcomes

Abstract

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Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review

“…A total of twelve studies were included for review: six published qualitative research studies [ 10 , 11 , 20 – 23 ]; four written patient testimonial series from a patient advocacy group (Nephcure) [ 24 – 27 ], and two video patient testimonials from a patient advocacy group (Nephcure) [ 28 , 29 ]. The 13 studies explored FSGS ( n = 7) and NS ( n = 6).…”

“…The 13 studies explored FSGS ( n = 7) and NS ( n = 6). Six studies included an adult population [ 11 , 21 , 22 , 24 , 25 , 28 ], four studies included a pediatric population [ 23 , 26 , 27 , 29 ], and two studies included both adult and adolescent populations [ 10 , 20 ]. All studies were conducted in the US or Canada.…”

“…The literature documented that FSGS has a relapsing/remitting profile. Patients reported that symptoms were rarely stable across time, describing unpredictable ‘flare-ups’, which caused them both annoyance and concern [ 10 , 11 , 20 , 24 – 27 , 29 ].…”

“…While most patients respond to corticosteroid treatment, some become resistant to treatment and progress to ESKD [ 8 ]. FSGS can occur at any age [ 9 ], and has a substantial impact on health-related quality of life (HRQoL); patients report impairment in aspects of daily life and emotional wellbeing [ 10 ]. Additionally, patients may live with the prospect of kidney failure and rapid progression to ESKD, requiring dialysis or a kidney transplant [ 11 ].…”

The Dual Role of Endothelin-1 and Angiotensin II in Disease Progression of Focal Segmental Glomerulosclerosis and IgA Nephropathy

“…36 Griffin described how the profound impact of nephrotic syndrome is seen on the lives of patients in her clinic, and can be especially devastating for children and young adults and during pregnancy. Studies have revealed that the impact includes physical symptoms, such as shortness of breath, severe oedema, and fatigue, 37,38 as well as an increased risk of cardiovascular problems, such as acute coronary syndrome, heart failure, venous thromboembolism, and death. 35 FSGS has also been shown to lead frequently to HRQoL issues such as anxiety, depression, poor sleep, and a reduced ability to socialise.…”