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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 Open the ORCID record for Smita C. Banerjee [Opens in a new window] ,
Elaine Pottenger ,
Mary Petriccione ,
Joanne F. Chou ,
Jennifer S. Ford ,
Charles A. Sklar ,
Leslie L. Robison ,
Ruth A. Kleinerman ,
Kevin C. Oeffinger  and
Jasmine H. Francis
...Show all authors
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
*
Author for correspondence: Smita C. Banerjee, Ph.D., Assistant Attending Behavioral Scientist, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, 641 Lexington Ave., 7th Floor, New York, NY10022. E-mail: [email protected]
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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.

Keywords

Common sense modelCoping strategiesEnucleationIllness representationRetinoblastoma
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 3 , June 2020 , pp. 322 - 331
Copyright
Copyright © Cambridge University Press 2019

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Footnotes

*

Co-senior authors.

References

REFERENCES

Abramson, DH, Fabius, AW, Issa, R, et al. (2015) Advanced unilateral retinoblastoma: The impact of ophthalmic artery chemosurgery on enucleation rate and patient survival at MSKCC. PLoS One 10(12), e0145436.CrossRefGoogle ScholarPubMed
Aggarwal, H, Singh, K, Kumar, P, et al. (2013) A multidisciplinary approach for management of postnucleation socket syndrome with dermis-fat graft and ocular prosthesis: A clinical report. Journal of Prosthodontics 22, 657–660.CrossRefGoogle Scholar
Chauveinc, L, Mosseri, V, Quintana, E, et al. (2001) Osteosarcoma following retinoblastoma: Age at onset and latency period. Ophthalmic Genetics 22(2), 77–88.CrossRefGoogle ScholarPubMed
Custer, PL, Kennedy, RH, Woog, JJ, et al. (2003) Orbital implants in enucleation surgery: A report by the American academy of ophthalmology. Ophthalmology 110, 2054–2061.CrossRefGoogle ScholarPubMed
Ek, U, Seregard, S, Jacobson, L, et al. (2002) A prospective study of children treated for retinoblastoma: Cognitive and visual outcomes in relation to treatment. Acta Ophthalmologica Scandinavica 80, 294–299.CrossRefGoogle ScholarPubMed
Elo, S and Kyngäs, H (2015) The qualitative content analysis process. Journal of Advanced Nursing 62, 107–115.CrossRefGoogle Scholar
Fidler, MM, Reulen, RC, Winter, DL, et al. (2018) Risk of subsequent bone cancers among 69 460 five-year survivors of childhood and adolescent cancer in Europe. Journal of the National Cancer Institute 110(2), doi: 10.1093/jnci/djx165.CrossRefGoogle ScholarPubMed
Fingeret, MC, Teo, I and Epner, DE (2014) Managing body image difficulties of adult cancer patients: Lessons from available research. Cancer 120, 633–641.CrossRefGoogle ScholarPubMed
Fletcher, O, Easton, D, Anderson, K, et al. (2004) Lifetime risks of common cancers among retinoblastoma survivors. Journal of the National Cancer Institute 96, 357–363.CrossRefGoogle ScholarPubMed
Ford, JS, Chou, JF, Sklar, CA, et al. (2015) Psychosocial outcomes in adult survivors of retinoblastoma. Journal of Clinical Oncology 33, 3608–3614.CrossRefGoogle ScholarPubMed
Friedman, DN, Chou, JF, Oeffinger, KC, et al. (2016) Chronic medical conditions in adult survivors of retinoblastoma: Results of the Retinoblastoma Survivor Study. Cancer 122, 773–781.CrossRefGoogle ScholarPubMed
Glaser, B and Strauss, A (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago, IL: Aldine.Google Scholar
Hall, LS, Ceisler, E and Abramson, DH (1999) Visual outcomes in children with bilateral retinoblastoma. Journal of the American Association for Pediatric Ophthalmology and Strabismus 3(3), 138–142.CrossRefGoogle ScholarPubMed
Hsieh, HF and Shannon, SE (2005) Three approaches to qualitative content analysis. Qualitative Health Research 15, 1277–1288.CrossRefGoogle ScholarPubMed
Kaste, SC, Chen, G, Fontanesi, J, et al. (1997) Orbital development in long-term survivors of retinoblastoma. Journal of Clinical Oncology 15, 1183–1189.CrossRefGoogle ScholarPubMed
Kelly, KR, McKetton, L, Schneider, KA, et al. (2013) Altered anterior visual system development following early monocular enucleation. Neuroimage Clinical 4, 72–81.CrossRefGoogle ScholarPubMed
Kleinerman, RA, Tucker, MA, Tarone, RE, et al. (2005). Risk of new cancers after radiotherapy in long-term survivors of retinoblastoma: an extended follow-up. Journal of Clinical Oncology 23, 2272–2279.CrossRefGoogle Scholar
Leventhal, H, Phillips, LA and Burns, E (2016) The Common-Sense Model of Self-Regulation (CSM): A dynamic framework for understanding illness self-management. Journal of Behavioral Medicine 39, 935–946.CrossRefGoogle ScholarPubMed
Liu, JC, Givi, B, Wolden, S, et al. (2011) Secondary skull base malignancies in survivors of retinoblastoma: The Memorial Sloan Kettering Cancer Center experience. Skull Base 21(2), 103–108.CrossRefGoogle ScholarPubMed
Lu, JE, Francis, JH, Dunkel, IJ, et al. (2019) Metastases and death rates after primary enucleation of unilateral retinoblastoma in the USA 2007–2017. British Journal of Ophthalmology 103, 1272–1277.CrossRefGoogle ScholarPubMed
MacCarthy, A, Bayne, AM, Brownbill, PA, et al. (2013) Second and subsequent tumours among 1927 retinoblastoma patients diagnosed in Britain 1951–2004. British Journal of Cancer 108, 2455–2463.CrossRefGoogle ScholarPubMed
Marees, T, Moll, AC, Imhof, SM, et al. (2008) Risk of second malignancies in survivors of retinoblastoma: More than 40 years of follow-up. Journal of the National Cancer Institute 100, 1771–1779.CrossRefGoogle ScholarPubMed
Marees, T, van Leeuwen, FE, Schaapveld, M, et al. (2010) Risk of third malignancies and death after a second malignancy in retinoblastoma survivors. European Journal of Cancer 46, 2052–2058.CrossRefGoogle ScholarPubMed
McAndrew, LM, Musumeci-Szabó, TJ, Mora, PA, et al. (2008) Using the common sense model to design interventions for the prevention and management of chronic illness threats: From description to process. British Journal of Health Psychology 13(Pt 2), 195–204.CrossRefGoogle Scholar
Mourits, DL, Hartong, DT, Lissenberg-Witte, BI, et al. (2018) Cosmetic results of enucleation and/or external beam radiation therapy in 195 retinoblastoma survivors. Acta Ophthalmologica 96, 631–640.CrossRefGoogle ScholarPubMed
Peylan-Ramu, N, Bin-Nun, A, Skleir-Levy, M, et al. (2001) Orbital growth retardation in retinoblastoma survivors: Work in progress. Medical and Pediatric Oncology 37, 465–470.CrossRefGoogle ScholarPubMed
Popa-Velea, O, Diaconescu, L, Jidveian Popescu, M, et al. (2017) Resilience and active coping style: Effects on the self-reported quality of life in cancer patients. International Journal of Psychiatry in Medicine 52, 124–136.CrossRefGoogle ScholarPubMed
Tamboli, D, Topham, A, Singh, N, et al. (2015) Retinoblastoma: A SEER dataset evaluation for treatment patterns, survival, and second malignant neoplasms. American Journal of Ophthalmology 160, 953–958.CrossRefGoogle ScholarPubMed
van Dijk, J, Imhof, SM, Moll, AC, et al. (2007a) Quality of life of adult retinoblastoma survivors in the Netherlands. Health and Quality of Life Outcomes 5, 30.CrossRefGoogle Scholar
van Dijk, J, Huisman, J, Moll, AC, et al. (2007b) Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health and Quality of Life Outcomes 5, 65.CrossRefGoogle Scholar
van Dijk, J, Grootenhuis, MA, Imhof, SM, et al. (2009a) Coping strategies of retinoblastoma survivors in relation to behavioral problems. Psychooncology 18, 1281–1289.CrossRefGoogle Scholar
van Dijk, J, Oostrom, KJ, Imhof, SM, et al. (2009b) Behavioral functioning of retinoblastoma survivors. Psychooncology 18, 87–95.CrossRefGoogle Scholar
Willard, VW, Qaddoumi, I, Chen, S, et al. (2014) Developmental and adaptive functioning in children with retinoblastoma: A longitudinal investigation. Journal of Clinical Oncology 32, 2788–2793.CrossRefGoogle ScholarPubMed
Yu, CL, Tucker, MA, Abramson, DH, et al. (2009) Cause-specific mortality in long-term survivors of retinoblastoma. Journal of the National Cancer Institute 101, 581–591.CrossRefGoogle ScholarPubMed
Zhang, L, Gao, T and Shen, Y (2018) Quality of life in children with retinoblastoma after enucleation in China. Pediatric Blood & Cancer 65(7), e27024.CrossRefGoogle ScholarPubMed