Considerable variations in growth hormone policy and prescription in paediatric end-stage renal disease across European countries-a report from the ESPN/ERA-EDTA registry.
Growth retardation in paediatric end-stage renal disease (ESRD) has a serious impact on adult life. It is potentially treatable with recombinant growth hormone (rGH). In this study, we aimed to quantify the variation in rGH policies and actual provided care in these patients across Europe.



Renal registry representatives of 38 European countries received a structured questionnaire on rGH policy. Cross-sectional data on height and actual use of rGH on children with ESRD aged <18 years were retrieved from the ESPN/ERA-EDTA Registry.



In 21 (75%) of 28 responding countries, rGH is reimbursed for children with ESRD. The specific conditions for reimbursement (minimum age, maximum age and chronic kidney disease stage) vary considerably. Mean height standard deviation scores (SDS) at renal replacement therapy (RRT) [95% confidence interval (CI)] were significantly higher in countries where rGH was reimbursed -1.80 (-2.06; -1.53) compared with countries in which it was not reimbursed [-2.34 (-2.49;-2.18), P < 0.001]. Comparison of the mean height SDS at onset of RRT and final height SDS yielded similar results. Among the 13 countries for which both data on actual rGH use between 2007 and 2011 and data from the questionnaire were available, 30.1% of dialysis and 42.3% of transplanted patients had a short stature, while only 24.1 and 7.6% of those short children used rGH, respectively.



Reimbursement of rGH associates with a less compromised final stature of ESRD children. In many countries with full rGH reimbursement, the actual rGH prescription in growth-retarded ESRD children is low and obviously more determined by the doctor's and patients' attitude towards rGH therapy than by financial hurdles.
Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands.
M
M
van Huis
ESPN/ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands.
M
M
Bonthuis
University Pediatric Clinic, Skopje, FYROM.
E
E
Sahpazova
Nephrology and Dialysis Unit, Department of Pediatrics, Azienda Ospedaliero Universitaria Sant'Orsola-Malpighi, Bologna, Italy.
F
F
Mencarelli
Department of Nephrology, University Children's hospital, Belgrade, Serbia.
B
B
Spasojević
Semmelweis University Budapest, Budapest, Hungary.
G
G
Reusz
Serviçio de Pediatria, Hospital de S. João, Porto, Portugal.
A
A
Caldas-Afonso
Department of Pediatrics, Oslo University Hospital, Rikshospitalet, Norway.
A
A
Bjerre
2nd Children's Hospital, Minsk, Belarus.
S
S
Baiko
University Hospital Prague-Motol, Prague, Czech Republic.
K
K
Vondrak
Department of Kidney Transplantation, Russian Children's Clinical Hospital, Moscow, Russia.
E A
EA
Molchanova
Paediatric Department, Faculty of Medicine, Safarik University, Kosice, Slovakia.
G
G
Kolvek
Research Institute for Mother and Child Health Care, Chisinau, Moldova.
N
N
Zaikova
Department of Pediatric Nephrology, University Children's Hospital, Vienna, Austria.
M
M
Böhm
Servicio de Nefrología Pediátrica y Hemodiálisis, Hospital Universitario Materno-Infantil Vall D'Hebron, Barcelona, Spain.
G
G
Ariceta
ESPN/ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands.
K J
KJ
Jager
Department of Paediatric Nephrology, University of Heidelberg, Center for Pediatrics and Adolescent Medicine, Heidelberg, Germany.
F
F
Schaefer
ESPN/ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands.
K J
KJ
van Stralen
Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands.
J W
JW
Groothoff
D000293:Adolescent; D000328:Adult; D001827:Body Height; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005060:Europe; D005260:Female; D019382:Human Growth Hormone / Q000627:therapeutic use*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007676:Kidney Failure, Chronic / Q000628:therapy*; D008297:Male; D010818:Practice Patterns, Physicians' / Q000331:legislation & jurisprudence*; D055553:Prescription Drugs / Q000008:administration & dosage*; D012042:Registries; D017582:Renal Replacement Therapy / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D055815:Young Adult
D055553:Prescription Drugs; D019382:Human Growth Hormone
Europe; disparities; growth; growth hormone; policies