Psychosocial outcomes in adult survivors of retinoblastoma Journal Article


Authors: Ford, J. S.; Chou, J. F.; Sklar, C. A.; Oeffinger, K. C.; Friedman, D. N.; McCabe, M.; Robison, L. L.; Kleinerman, R. A.; Li, Y.; Marr, B. P.; Abramson, D. H.; Dunkel, I. J.
Article Title: Psychosocial outcomes in adult survivors of retinoblastoma
Abstract: Purpose: 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 Patients and 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 mai 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. Conclusion: 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. © 2015 American Society of Clinical Oncology. All rights reserved.
Keywords: adult; controlled study; patient satisfaction; major clinical study; cancer recurrence; outcome assessment; demography; randomized controlled trial; retinoblastoma; cancer survivor; standard; depression; multicenter study; distress syndrome; posttraumatic stress disorder; anxiety; sibling; fear; telephone; social psychology; e-mail; somatization; facies; human; male; female; priority journal; article
Journal Title: Journal of Clinical Oncology
Volume: 33
Issue: 31
ISSN: 0732-183X
Publisher: American Society of Clinical Oncology  
Date Published: 2015-11-01
Start Page: 3608
End Page: 3614
Language: English
DOI: 10.1200/jco.2014.60.5733
PROVIDER: scopus
PMCID: PMC4622100
PUBMED: 26417002
DOI/URL:
Notes: Export Date: 2 December 2015 -- Source: Scopus
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MSK Authors
  1. Yuelin Li
    136 Li
  2. Joanne Fu-Lou Chou
    145 Chou
  3. Brian Marr
    108 Marr
  4. Ira J Dunkel
    250 Dunkel
  5. Charles A Sklar
    262 Sklar
  6. Jennifer S Ford
    57 Ford
  7. David H Abramson
    247 Abramson
  8. Kevin Oeffinger
    248 Oeffinger
  9. Mary McCabe
    93 McCabe