Preparation and Rationale for a Patient-Centered Clinical Outcome Assessment Set of Fluid Overload for Drug Development in Nephrotic Syndrome.

Introduction: Fluid overload is a source of substantial morbidity for adults and children with nephrotic syndrome (NS). Preparation and Rationale for a Fluid Overload in Nephrotic Syndrome Clinical Outcomes Assessment Set for Drug Development (Prepare-NS, 5UG3FD007308) was funded by the US Food and Drug Administration to develop a core set of patient-reported and observer-reported (for young children) outcome measures of fluid overload for use in pharmaceutical trials across the lifespan.

Methods: The Prepare-NS study team developed the proposed context of use with input from stakeholders.

The humanistic burden of immunoglobulin A nephropathy on patients and care-partners in the United States.

Purpose: This cross-sectional survey study quantified the humanistic burden of immunoglobulin A nephropathy (IgAN), in terms of physical and mental health-related quality of life (HRQoL) and work productivity, among adults with primary IgAN and their care-partners.

Methods: HRQoL was assessed (01/31/22 - 05/31/23) with validated tools including the KDQoL-36 (with SF-12), GAD-7 (anxiety), PHQ-9 (depression), and WPAI: SHP (work productivity). Participant characteristics and total/domain scores were summarized; selected outcomes were compared to an external, kidney disease-free cohort.

Building Partnerships to Improve Health Outcomes: Pediatric Patient and Family Engagement in Nephrology Practice.

As health care practices have evolved from a disease-oriented to patient-focused paradigm, patient and family engagement (PFE) has been recognized as an important aspect of health care delivery and outcomes. While pediatricians have long approached care delivery with a family-centered lens, PFE may be a less familiar concept to situate among related concepts such as shared decision-making, self-efficacy, patient activation, and family-centered care. Children with CKD and their families indicate a need and desire for enhanced PFE efforts in pediatric nephrology.

Effects of visfatin gene polymorphism RS4730153 on exercise-induced weight loss of obese children and adolescents of Han Chinese.

Visfatin is a recently discovered adipokine that contributes to glucose and obesity-related conditions. This study investigates Visfatin RS4730153 polymorphism from the perspectives of its relations with glucose/lipid metabolism and its influence on the effects of exercise-induced weight loss. Eighty-eight obese Han Chinese children and adolescents were randomly selected from a 2008 Shanghai Weight Loss Summer Camp and were supervised to complete a 4 week aerobic exercise training program.