title: Exploration of Morbidity in a Serial Study of Long-Term Brain Tumor Survivors: A Focus on Pain.
abstract: OBJECTIVE
  Children surviving brain tumors are frequently identified as having substantially decreased health-related quality of life (HRQL) in cross-sectional studies. This study explored the HRQL of a cohort of such survivors, who were recruited as adolescents and followed for a decade, in order to determine the trajectory of their morbidities.
  
  
  METHODS
  Children diagnosed between January 1, 1985, and December 31, 1998, more than 2 years from diagnosis (N = 40), were recruited in 2000/2001 (T1) aged 16.74 ± 4.23 years. Health Utilities Index questionnaires (HUI2/3) were completed in 2000/2001 and again at 5 years (T2) and 10 years (T3), with 37 and 25 participants then aged 21.54 ± 4.29 and 27.97 ± 4.07 years, respectively. In addition to study subjects, parental proxies completed questionnaires at T1 and T2, while study subjects selected proxies at T3. Single attributes (domains/dimensions) of HRQL and details of pain were analyzed.
  
  
  RESULTS
  Cognition was the attribute compromised most often (T1 = 66.7% of participants, T2 = 62.2%, T3 = 60.0%). Pain was also reported frequently (T1 = 35%, T2 = 25%, T3 = 52%), and at T3 correlated moderately with HUI2 sensation (0.77) and HUI3 vision (0.44), speech (0.51), and ambulation (0.50). The lower median utility score for pain at T3 than at T1/T2 was a clinically important difference. Severe pain was identified in the lower extremities, back, upper extremities, and abdomen. Morbidity was observed also in emotion (worry HUI2 and unhappiness HUI3), sensation, and vision.
  
  
  CONCLUSIONS
  Decreased HRQL in survivors of brain tumors in childhood is multifaceted. Pain is a prominent burden, along with morbidity in cognition, emotion, sensation, and vision. Further studies should explore pain and neurologic deficits, and potential opportunities for therapeutic intervention.
authors.affiliation: 1 Service of Hematology-Oncology, McMaster Children's Hospital , Hamilton Health Sciences, Hamilton, Ontario, Canada .
authors.forename: Trishana
authors.initials: T
authors.lastname: Nayiager
authors.affiliation: 1 Service of Hematology-Oncology, McMaster Children's Hospital , Hamilton Health Sciences, Hamilton, Ontario, Canada .
authors.forename: JoAnn
authors.initials: J
authors.lastname: Duckworth
authors.affiliation: 2 Child Health Evaluative Sciences, Hospital for Sick Children , Toronto, Ontario, Canada .
authors.forename: Eleanor
authors.initials: E
authors.lastname: Pullenayegum
authors.affiliation: 3 Department of Radiation Oncology, Juravinski Cancer Centre, Hamilton Health Sciences , Hamilton, Ontario, Canada .
authors.forename: Anthony
authors.initials: A
authors.lastname: Whitton
authors.affiliation: 4 Service of Surgery, McMaster Children's Hospital , Hamilton Health Sciences, Hamilton, Ontario, Canada .
authors.forename: Robert
authors.initials: R
authors.lastname: Hollenberg
authors.affiliation: 5 Health Utilities, Inc. , Dundas, Ontario, Canada .
authors.forename: John
authors.initials: J
authors.lastname: Horsman
authors.affiliation: 5 Health Utilities, Inc. , Dundas, Ontario, Canada .
authors.forename: William
authors.initials: W
authors.lastname: Furlong
authors.affiliation: 6 Department of Obstetrics and Gynecology, Mount Sinai Hospital , Toronto, Ontario, Canada .
authors.forename: Rachel
authors.initials: R
authors.lastname: Spitzer
authors.affiliation: 1 Service of Hematology-Oncology, McMaster Children's Hospital , Hamilton Health Sciences, Hamilton, Ontario, Canada .|7 Division of Hematology-Oncology, Department of Pediatrics, McMaster University , Hamilton, Ontario, Canada .
authors.forename: Ronald
authors.initials: R
authors.lastname: Barr
mesh_terms: D001932:Brain Neoplasms / Q000150:complications / Q000401:mortality* / Q000628:therapy; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D010146:Pain / Q000209:etiology*; D017741:Survivors
keywords: brain tumors; children; morbidity; pain; survivors