title: Neuroblastoma With Intraspinal Extension: Health Problems in Long-Term Survivors.
abstract: OBJECTIVE
  To evaluate the prevalence of health problems in 5-year survivors treated for neuroblastoma (NBL) with intraspinal extension.
  
  
  METHODS
  Retrospective, single center cohort study (using data from Childhood Cancer Registry and medical records) of patients treated for NBL with intraspinal extension (between 1980 and 2007) who survived ≥ 5 years after diagnosis. Health problems were graded according to the Common Terminology Criteria for Adverse Events (CTCAEv.3.0).
  
  
  RESULTS
  All eligible patients (n = 19) were included (n = 7 no neurological symptoms at diagnosis), median age at diagnosis was 1.2 years (0.6-10.8 years), and median follow-up time was 15.6 years (6.3-29.5 years). Ninety-five percent of survivors had ≥1 health problem and 48% of survivors had ≥4 health problem with a mean of 3.8 per survivor. Fifty-three percent of survivors had at least one severe (grade 3) or life-threatening/disabling (grade 4) health problem. The three most prevalent health problems were kyphosis and/or scoliosis (68% of patients), motor neuropathy (32% of patients), and sensory neuropathy (26% of patients). Of the 13 patients who underwent a laminectomy, 54% (seven of 13) developed a grade 3 and 23% (three of 13) developed a grade 4 health problem. Among six patients, without laminectomy, 17% developed (one of six) a grade 3 and in 17% developed (one of six) a grade 4 health problem.
  
  
  CONCLUSIONS
  Ninety-five percent of 5-year survivors treated for a childhood intraspinal NBL have health problems. The high prevalence of grade 3 and 4 health problems (especially in the laminectomy group) emphasizes the importance of specialized long-term multidisciplinary follow-up and identifies optimal treatment with limited morbidity and maximal efficacy.
authors.affiliation: Department of Pediatric Oncology, Emma Children's Hospital/Academic Medical Centre (EKZ/AMC), Amsterdam, the Netherlands.|Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
authors.forename: Kathelijne
authors.initials: K
authors.lastname: Kraal
authors.affiliation: Department of Pediatric Oncology, Emma Children's Hospital/Academic Medical Centre (EKZ/AMC), Amsterdam, the Netherlands.
authors.forename: Thomas
authors.initials: T
authors.lastname: Blom
authors.affiliation: Department of Pediatric Oncology, Emma Children's Hospital/Academic Medical Centre (EKZ/AMC), Amsterdam, the Netherlands.|Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
authors.forename: Lieve
authors.initials: L
authors.lastname: Tytgat
authors.affiliation: Department of Pediatric Endocrinology, Wilhelmina Children's Hospital (WKZ), Utrecht, the Netherlands.
authors.forename: Hanneke
authors.initials: H
authors.lastname: van Santen
authors.affiliation: Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
authors.forename: Max
authors.initials: M
authors.lastname: van Noesel
authors.affiliation: Department of Radiology, Academic Medical Centre (AMC), Amsterdam, the Netherlands.
authors.forename: Anne
authors.initials: A
authors.lastname: Smets
authors.affiliation: Department of Orthopedic Surgery, Academic Medical Centre (AMC), Amsterdam, the Netherlands.
authors.forename: Jos
authors.initials: J
authors.lastname: Bramer
authors.affiliation: Department of Pediatric Oncology, Emma Children's Hospital/Academic Medical Centre (EKZ/AMC), Amsterdam, the Netherlands.
authors.forename: Huib
authors.initials: H
authors.lastname: Caron
authors.affiliation: Department of Pediatric Oncology, Emma Children's Hospital/Academic Medical Centre (EKZ/AMC), Amsterdam, the Netherlands.
authors.forename: Leontien
authors.initials: L
authors.lastname: Kremer
authors.affiliation: Department of Pediatric Oncology, Emma Children's Hospital/Academic Medical Centre (EKZ/AMC), Amsterdam, the Netherlands.|Department of Medical Oncology, Academic Medical Centre (AMC), Amsterdam, the Netherlands.
authors.forename: Heleen
authors.initials: H
authors.lastname: van der Pal
mesh_terms: D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D009447:Neuroblastoma / Q000150:complications*; D012189:Retrospective Studies; D013120:Spinal Cord Neoplasms / Q000150:complications*; D017741:Survivors / Q000706:statistics & numerical data*
keywords: health problems; intraspinal extension; long-term survivors; neuroblastoma