Approach to growth hormone therapy in children with chronic kidney disease varies across North America: the Midwest Pediatric Nephrology Consortium report

Abstract

BackgroundGrowth impairment remains common in children with chronic kidney disease (CKD). Available literature indicates low level of recombinant human growth hormone (rhGH) utilization in short children with CKD. Despite efforts at consensus guidelines, lack of high-level evidence continues to complicate rhGH therapy decision-making and the level of practice variability in rhGH treatment by pediatric nephrologists is unknown.MethodsCross-sectional online survey electronically distributed to pediatric nephrologists through the Midwest Pediatric Nephrology Consortium and American Society of Pediatric Nephrology.ResultsSeventy three pediatric nephrologists completed the survey. While the majority (52.1%) rarely involve endocrinology in rhGH management, 26.8% reported that endocrinology managed most aspects of rhGH treatment in their centers. The majority of centers (68.5%) have a dedicated renal dietitian, but 20.6% reported the nephrologist as the primary source of nutritional support for children with CKD. Children with growth failure did not receive rhGH most commonly because of family refusal. Differences in initial work-up for rhGH therapy include variable use of bone age (95%), thyroid function (58%), insulin-like growth factor-1 (40%), hip/knee X-ray (36%), and ophthalmologic evaluation (7%). Most pediatric nephrologists (95%) believe that rhGH treatment improves quality of life, but only 24% believe that it improves physical function; 44% indicated that rhGH improves lean body mass.ConclusionsThere is substantial variation in pediatric nephrology practice in addressing short stature and rhGH utilization in children with CKD. Hence, there may be opportunities to standardize care to study and improve growth outcomes in short children with CKD.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-017-0599-1) contains supplementary material, which is available to authorized users.

Developing Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi Survey

“…47 For patients, growth appeared to be of lower priority compared with caregivers and HCPs. This may be because HCPs believe that growth is associated with better quality of life 48,49 and cardiovascular disease/vascular disease.…”

Effects of recombinant human growth hormone on protein malnutrition and IGF-1 and IL-2 gene expression levels in chronic nephrotic syndrome

“…Nephrotic syndrome is the most clinically common kidney-related disease at present, posing a serious threat to physical health ( 1 ). In its pathogenesis, immune dysfunction is the main pathogenic and initiative factors ( 2 ).…”

Chronic Kidney Disease and Dietary Measures to Improve Outcomes

“…Assessment of nutritional status in children with CKD is complex (Box 4) 31,93 , and should be ideally conducted jointly be a pediatric nephrologist and a pediatric dietitian experienced in the nutritional management of patients with CKD. 94 The term "malnutrition" refers to an inadequately low dietary intake, typically with adaptive increase in appetite and decrease in metabolic rate; 95 therefore this term is usually not applicable to the alterations of nutritional status currently seen in children with CKD, especially in developed countries. Indeed, in the CKiD study, children with CKD consumed more protein and calories than recommended 66 .…”

“…119 Recent survey of pediatric nephrologists have identified family refusal as a most common reason for rhGH underutilization, usually due to fear of injections. 94 Logistical challenges, including those related to insurance approval were also reported to influence practice patterns of rhGH therapy in children with CKD in North America. 94 Evaluation of bone age is required in short children older than 12 years with CKD prior to rhGH therapy initiation.…”