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Impact of enucleation on adult retinoblastoma survivors’ quality of life: A qualitative study of survivors' perspectives

Published online by Cambridge University Press:  08 November 2019

Smita C. Banerjee
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY Weill Cornell Medical College, New York, NY
Elaine Pottenger
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY
Mary Petriccione
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY
Joanne F. Chou
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY
Jennifer S. Ford
Affiliation:
Hunter College and The Graduate Center, City University of New York, New York, NY
Charles A. Sklar
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY Weill Cornell Medical College, New York, NY
Leslie L. Robison
Affiliation:
St. Jude Children's Research Hospital, Memphis, TN
Ruth A. Kleinerman
Affiliation:
National Cancer Institute, Rockville, MD
Kevin C. Oeffinger
Affiliation:
Duke University, Durham, NC
Jasmine H. Francis
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY
David H. Abramson
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY Weill Cornell Medical College, New York, NY
Ira J. Dunkel
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY Weill Cornell Medical College, New York, NY
Danielle Novetsky Friedman
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, NY Weill Cornell Medical College, New York, NY
Corresponding
E-mail address:

Abstract

Objectives

Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors' perception of how this treatment impacts overall quality of life.

Methods

Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors' lives and in what ways in free text, narrative form.

Results

Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living.

Significance of results

This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors' long-term quality of life.

Type
Original Article
Copyright
Copyright © Cambridge University Press 2019

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Footnotes

*

Co-senior authors.

References

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