The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study

Abstract

Background The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL™ 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort. Methods This was a prospective study in which 127 children (age range 8–17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N=67) and incident (N=60) disease at the study enrollment visit. Results The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p=0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p=0.02) and PedsQL social functioning (p<0.01). Conclusion The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument.

Quality of life of children with idiopathic nephrotic syndrome according to clinical types

“…D.T. Selewski, et al's study [8] shows that QOL score in the learning field increases, which means that the QOL related to learning is declined.…”

Optimizing Enrollment of Patients into Nephrology Research Studies

“…Whenever possible, offer extended hours for research visits, including evenings or weekends, to minimize work or school absences for the subject and family caregiver. Alternatives to traditional study visits may include studies in which patient-reported information through text messaging, smartphones, or other home monitoring devices optimizes prospective data collection while minimizing study burden (32)(33)(34). The electronic medical record may be used to simultaneously collect clinical and research data, or collected data may be accessed for subsequent research endeavors.…”

Quality of Life in Pediatric Patients with Minimal Change Disease

“…Only the QOL subscale "social function" was impaired while other domains were not affected [3]. In USA, an evaluation of QOL using PedsQL Inventory in 127 American children with prevalent NS as compared to incident NS showed poor scores in social and school performances [2].…”

“…Although 80% of these children are corticosteroid responsive, nearly half of them demonstrate a frequently relapsing or steroid-dependent course, often resulting in multiple complications, hospitalizations, or even chronic renal failure [2]. Not infrequently, NS spans a significant portion of a child's formative years.…”

“…Hence, a formal evaluation of the impact of the disease on physical, emotional, social, and school performance and health-related QOL (HRQOL) is imperative to provide comprehensive and holistic patient care. Considering the paucity of information on QOL in these patients in general and Arab children in particular, we conducted the present study [2,3].…”