title: Prospective multicenter registration of major late sequelae in sarcoma patients using the Late Effects Surveillance System (LESS).
abstract: BACKGROUND
  Late effects become progressively more important for the evaluation of therapeutic success in paediatric oncology. Thus, in 1998, the Late Effects Surveillance System (LESS) started to register and assess multicentrally, prospectively and longitudinally late effects of treatment for the group of Ewing's, soft tissue- and osteosarcoma patients.
  
  
  METHODS
  The yearly results of the follow-up examinations of 785 Ewing's, soft tissue- and osteosarcoma patients, who were treated from 1.1.1998 until 31.12.2001, were prompted and assessed conforming to the guidelines developed by the LESS-study.
  
  
  RESULTS
  136/181 (75 %) of follow-up institutions take part in the LESS-study. Only 8 % of patients eligible for the LESS-study were cared for in non-cooperating facilities. Questionnaire return could be raised to 73-78 % and data completeness could also be significantly improved in the course of the study. Departments of internal medicine had a lower questionnaire return percentage than departments of paediatrics. Data availability for the nephrologic after-care was not satisfactory.
  
  
  CONCLUSIONS
  The LESS project has been well established. Thus, the basis has been set for the development of risk-oriented strategies for intervention and for the further improvement of the follow-up of major late effects in sarcoma patients.
authors.affiliation: Department of Immunology and Oncology, University Clinic for Children and Adolescents, Erlangen.
authors.forename: T
authors.initials: T
authors.lastname: Langer
authors.forename: W
authors.initials: W
authors.lastname: Stöhr
authors.forename: M
authors.initials: M
authors.lastname: Paulides
authors.forename: A
authors.initials: A
authors.lastname: Kremers
authors.forename: H-G
authors.initials: HG
authors.lastname: Dörr
authors.forename: U
authors.initials: U
authors.lastname: Göbel
authors.forename: J D
authors.initials: JD
authors.lastname: Beck
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000971:Antineoplastic Combined Chemotherapy Protocols; D001859:Bone Neoplasms / Q000150:complications / Q000188:drug therapy / Q000401:mortality / Q000628:therapy; D002648:Child; D002986:Clinical Trials as Topic; D005500:Follow-Up Studies; D005858:Germany; D006801:Humans; D015337:Multicenter Studies as Topic; D012516:Osteosarcoma / Q000150:complications / Q000188:drug therapy / Q000401:mortality / Q000628:therapy; D011159:Population Surveillance; D017410:Practice Guidelines as Topic; D011446:Prospective Studies; D011788:Quality of Life; D012042:Registries; D012509:Sarcoma / Q000150:complications / Q000188:drug therapy / Q000401:mortality* / Q000628:therapy*; D012512:Sarcoma, Ewing / Q000150:complications / Q000188:drug therapy / Q000401:mortality / Q000628:therapy; D011795:Surveys and Questionnaires; D017741:Survivors; D013997:Time Factors