title: Psychosocial Outcomes in Adult Survivors of Retinoblastoma.
abstract: OBJECTIVE
  Survival rates for individuals diagnosed with retinoblastoma (RB) exceed 95% in the United States; however, little is known about the long-term psychosocial outcomes of these survivors.
  
  
  METHODS
  Adult RB survivors, diagnosed from 1932 to 1994 and treated in New York, completed a comprehensive questionnaire adapted from the Childhood Cancer Survivor Study (CCSS), by mail or telephone. Psychosocial outcomes included psychological distress, anxiety, depression, somatization, fear of cancer recurrence, satisfaction with facial appearance, post-traumatic growth, and post-traumatic stress symptoms; noncancer CCSS siblings served as a comparison group.
  
  
  RESULTS
  A total of 470 RB survivors (53.6% with bilateral RB; 52.1% female) and 2,820 CCSS siblings were 43.3 (standard deviation [SD], 11) years and 33.2 (SD, 8.4) years old at the time of study, respectively. After adjusting for sociodemographic factors, RB survivors did not have significantly higher rates of depression, somatization, distress, or anxiety compared with CCSS siblings. Although RB survivors were more likely to report post-traumatic stress symptoms of avoidance and/or hyperarousal (both P < .01), only five (1.1%) of 470 met criteria for post-traumatic stress disorder. Among survivors, having a chronic medical condition did not increase the likelihood of psychological problems. Bilateral RB survivors were more likely than unilateral RB survivors to experience fears of cancer recurrence (P < .01) and worry about their children being diagnosed with RB (P < .01). However, bilateral RB survivors were no more likely to report depression, anxiety, or somatic complaints than unilateral survivors.
  
  
  CONCLUSIONS
  Most RB survivors do not have poorer psychosocial functioning compared with a noncancer sample. In addition, bilateral and unilateral RB survivors seem similar with respect to their psychological symptoms.
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD. fordj@mskcc.org.
authors.forename: Jennifer S
authors.initials: JS
authors.lastname: Ford
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Joanne F
authors.initials: JF
authors.lastname: Chou
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Charles A
authors.initials: CA
authors.lastname: Sklar
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Kevin C
authors.initials: KC
authors.lastname: Oeffinger
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Danielle
authors.initials: D
authors.lastname: Novetsky Friedman
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Mary
authors.initials: M
authors.lastname: McCabe
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Leslie L
authors.initials: LL
authors.lastname: Robison
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Ruth A
authors.initials: RA
authors.lastname: Kleinerman
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Yuelin
authors.initials: Y
authors.lastname: Li
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Brian P
authors.initials: BP
authors.lastname: Marr
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: David H
authors.initials: DH
authors.lastname: Abramson
authors.affiliation: Jennifer S. Ford, Joanne F. Chou, Charles A. Sklar, Kevin C. Oeffinger, Danielle Novetsky Friedman, Mary McCabe, Yuelin Li, Brian P. Marr, David H. Abramson, and Ira J. Dunkel, Memorial Sloan Kettering Cancer Center; Jennifer S. Ford, Charles A. Sklar, David H. Abramson, and Ira J. Dunkel, Weill-Cornell Medical College, New York, NY; Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN; and Ruth A. Kleinerman, National Cancer Institute, Bethesda, MD.
authors.forename: Ira J
authors.initials: IJ
authors.lastname: Dunkel
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005123:Eye; D015353:Eye Enucleation / Q000523:psychology*; D005239:Fear; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009364:Neoplasm Recurrence, Local / Q000175:diagnosis; D011584:Psychology; D012175:Retinoblastoma / Q000523:psychology* / Q000601:surgery / Q000628:therapy*; D012189:Retrospective Studies; D035781:Siblings; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D016896:Treatment Outcome; D014481:United States; D055815:Young Adult