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

   

Authors:	Banerjee, S. C.; Pottenger, E.; Petriccione, M.; Chou, J. F.; Ford, J. S.; Sklar, C. A.; Robison, L. L.; Kleinerman, R. A.; Oeffinger, K. C.; Francis, J. H.; Abramson, D. H.; Dunkel, I. J.; Friedman, D. N.
Article Title:	Impact of enucleation on adult retinoblastoma survivors' quality of life: A qualitative study of survivors' perspectives
Abstract:	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. Copyright © Cambridge University Press 2019.
Keywords:	retinoblastoma; enucleation; coping strategies; common sense model; illness representation
Journal Title:	Palliative and Supportive Care
Volume:	18
Issue:	3
ISSN:	1478-9515
Publisher:	Cambridge University Press
Date Published:	2020-06-01
Start Page:	322
End Page:	331
Language:	English
DOI:	10.1017/s1478951519000920
PUBMED:	31699178
PROVIDER:	scopus
PMCID:	PMC7205583
DOI/URL:	https://www.scopus.com/inward/record.uri?eid=2-s2.0-85087466327&doi=10.1017%2fS1478951519000920&partnerID=40&md5=8510d57802c984b5c7683e38de81b1f1
Notes:	Article -- Export Date: 3 August 2020 -- Source: Scopus

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