Characterizing daily life experience of patients on maintenance dialysis.

BACKGROUND: Despite growing literature of the dialysis patients' high burden of illness and a compromised quality of life, little is known about their daily life experiences. METHODS: A cross-sectional study using the day reconstruction method, an experience sampling method, was used. Seventy-one dialysis patients recruited from three dialysis centers systematically reconstructed their activities and experiences of the preceding day. Time spent on their activities, settings and associated emotions were assessed to compute U-Index scores (the percentage of time a person spent in an unpleasant or undesirable state). Patients also completed the Illness Effects Questionnaire-Self-Report (IEQ-S) and the Short-Form Health Survey-36 v2 (SF-36v2). RESULTS: Patients spent ∼6 h of their day (excluding sleep hours) in an unpleasant or undesirable state (U-Index = 34.45 ± 29.26). U-Index scores did not differ by race, age, sex or years on dialysis and were moderately associated with IEQ-S scores (r = 0.43, P ≤ 0.001) and weakly associated with SF-36v2 physical component scores (r = -0.34, P = 0.003). U-Index scores differed significantly between dialysis days and non-dialysis days for hemodialysis patients (P = 0.012). Those who had depression or used antidepressants and reported income not meeting basic needs showed significantly higher U-Index scores than their counterparts (P < 0.05). CONCLUSIONS: The findings may assist clinicians to better understand the daily activities and burdens experienced by dialysis patients and suggest areas for future research and clinical considerations to improve the quality of their lives.

Follow-up of phase I trial of adalimumab and rosiglitazone in FSGS: III. Report of the FONT study group.

BACKGROUND: Patients with resistant primary focal segmental glomerulosclerosis (FSGS) are at high risk of progression to chronic kidney disease stage V. Antifibrotic agents may slow or halt this process. We present outcomes of follow-up after a Phase I trial of adalimumab and rosiglitazone, antifibrotic drugs tested in the Novel Therapies in Resistant FSGS (FONT) study. METHODS: 21 patients--12 males and 9 females, age 16.0 +/- 7.5 yr, and estimated GFR (GFRe) 121 +/- 56 mL/min/1.73 m2--received adalimumab (n = 10), 24 mg/m2 every 14 days or rosiglitazone (n = 11), 3 mg/m2 per day for 16 weeks. The change in GFRe per month prior to entry and after completion of the Phase I trial was compared. RESULTS: 19 patients completed the 16-week FONT treatment phase. The observation period pre-FONT was 18.3 +/- 10.2 months and 16.1 +/- 5.7 months after the study. A similar percentage of patients, 71% and 56%, in the rosiglitazone and adalimumab cohorts, respectively, had stabilization in GFRe, defined as a reduced negative slope of the line plotting GFRe versus time without requiring renal replacement therapy after completion of the FONT treatment period (P = 0.63). CONCLUSION: Nearly 50% of patients with resistant FSGS who receive novel antifibrotic agents may have a legacy effect with delayed deterioration in kidney function after completion of therapy. Based on this proof-of-concept preliminary study, we recommend long-term follow-up of patients enrolled in clinical trials to ascertain a more comprehensive assessment of the efficacy of experimental treatments.

Management patterns of childhood-onset nephrotic syndrome.

As an initial effort to identify opportunities to improve the management of children with nephrotic syndrome, the goal of this study was to assess the present-day management of children with primary nephrotic syndrome. A web-based survey was designed to assess the current management styles of all pediatric nephrology faculties at ten participating institutions. Ninety-one percent completed the initial survey. The duration of initial glucocorticoid therapy ranged from 4 to 24 weeks. Physicians reported that the recommendation for kidney biopsy was dependent on the response to initial corticosteroid therapy, with the minority always recommending a biopsy for frequently relapsing or steroid-dependent cases. All responding physicians recommended a kidney biopsy in steroid-resistant cases. Treatment strategies were reported to vary based upon the steroid response pattern and, where available, kidney histopathology. Striking variations in therapeutic preferences were described when alternatives to glucocorticoids were considered. The variability of management practices among pediatric nephrologists in the USA combined with the changing characteristics of our pediatric population raise concerns about our future strategies for improving healthcare for children coping with nephrotic syndrome. This variability is not unique to children's healthcare or to nephrology. However, a systematic approach to patient care and improvement in health outcomes has been shown to substantially improve morbidity and mortality outcomes in children with chronic health conditions.