Cosmetic results of enucleation and/or external beam radiation therapy in 195 retinoblastoma survivors

Mourits, Daphne L.; Hartong, Dyonne T.; Lissenberg‐Witte, Birgit I.; Bosscha, Machteld I.; Tan, H. Stevie; Moll, Annette C.

doi:10.1111/aos.13729

Cited by 13 publications

(13 citation statements)

References 29 publications

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“…While the impact of treatment on objective measures, such as overall survival (Yu et al, 2009; Tamboli et al, 2015), subsequent malignancy risk (Chauveinc et al, 2001; Fletcher et al, 2004; Kleinerman et al, 2005; Marees et al, 2008, 2010; Liu et al, 2011; MacCarthy et al, 2013; Fidler et al, 2018), and even ocular cosmesis (Aggarwal et al, 2013; Mourits et al, 2018), has been studied extensively in patients with retinoblastoma, far less data exist on subjective and psychosocial measures, particularly with regard to the impact of enucleation on long-term quality of life. Quantitative studies on quality of life exist with variable results (van Dijk et al, 2007a, 2007b; van Dijk et al, 2009b; Mourits et al, 2018; Zhang et al, 2018). For instance, a study of 65 children and adolescent retinoblastoma survivors demonstrated that survivors reported very good health-related quality of life (van Dijk et al, 2007b).…”

Section: Discussionmentioning

confidence: 99%

“…After a mean of 42 years since diagnosis, almost a third of study participants (n = 148, 36.9%) still reported that their lives were profoundly affected by loss of one or both eyes due to surgical enucleation, another third (n = 146, 36.4%) reported moderate affect to their lives, and just over a quarter (n = 107; 26.7%) reported low affect. While the impact of treatment on objective measures, such as overall survival (Yu et al, 2009;Tamboli et al, 2015), subsequent malignancy risk (Chauveinc et al, 2001;Fletcher et al, 2004;Kleinerman et al, 2005;Marees et al, 2008Marees et al, , 2010Liu et al, 2011;MacCarthy et al, 2013;Fidler et al, 2018), and even ocular cosmesis (Aggarwal et al, 2013;Mourits et al, 2018), has been studied extensively in patients with retinoblastoma, far less data exist on subjective and psychosocial measures, particularly with regard to the impact of enucleation on long-term quality of life. Quantitative studies on quality of life exist with variable results (van Dijk et al, 2007a(van Dijk et al, , 2007bvan Dijk et al, 2009b;Mourits et al, 2018;Zhang et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2019

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AbstractObjectivesRetinoblastoma 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.MethodsQualitative 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.ResultsFour 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 resultsThis 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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

et al. 2019

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“…Conventional EBRT of hereditary retinoblastoma with a linear accelerator using the Schipper technique results in severe midface growth inhibition with corresponding cosmetic consequences. Mourits et al could show in 195 retinoblastoma survivors that EBRT resulted in worse cosmetic outcomes compared to enucleation alone [29]. They demonstrated that patients treated with EBRT had significantly more superior sulcus volume deficiencies than those treated with enucleation alone [29].…”

Section: Discussionmentioning

confidence: 99%

“…Mourits et al could show in 195 retinoblastoma survivors that EBRT resulted in worse cosmetic outcomes compared to enucleation alone [29]. They demonstrated that patients treated with EBRT had significantly more superior sulcus volume deficiencies than those treated with enucleation alone [29]. In addition, Mouw et al [18] compared the MRI-based orbital heights and widths of retinoblastoma patients treated with PBT and/or enucleation in a cohort of 12 participants.…”

Section: Discussionmentioning

confidence: 99%

Feasibility of Proton Beam Therapy as a Rescue Therapy in Heavily Pre-Treated Retinoblastoma Eyes

Biewald

Kiefer

Geismar³

et al. 2021

Cancers

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Despite the increased risk of subsequent primary tumors (SPTs) external beam radiation (EBRT) may be the only therapeutic option to preserve a retinoblastoma eye. Due to their physical properties, proton beam therapy (PBT) offers the possibility to use the effectiveness of EBRT in tumor treatment and to decisively reduce the treatment-related morbidity. We report our experiences of PBT as rescue therapy in a retrospectively studied cohort of 15 advanced retinoblastoma eyes as final option for eye-preserving therapy. The average age at the initiation of PBT was 35 (14–97) months, mean follow-up was 22 (2–46) months. Prior to PBT, all eyes were treated with systemic chemotherapy and a mean number of 7.1 additional treatments. Indication for PBT was non-feasibility of intra-arterial chemotherapy (IAC) in 10 eyes, tumor recurrence after IAC in another 3 eyes and diffuse infiltrating retinoblastoma in 2 eyes. Six eyes (40%) were enucleated after a mean time interval of 4.8 (1–8) months. Cataract formation was the most common complication affecting 44.4% of the preserved eyes, yet 77.8% achieved a visual acuity of >20/200. Two of the 15 children treated developed metastatic disease during follow-up, resulting in a 13.3% metastasis rate. PBT is a useful treatment modality as a rescue therapy in retinoblastoma eyes with an eye-preserving rate of 60%. As patients are at lifetime risk of SPTs consistent monitoring is mandatory.

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“…However, long-term sequelae are common and often a burden for survivors. Reported side effects include compromised vision aesthetic deficits after surgery or irradiation, platinum-induced ototoxicity and psychosocial late effects [ 28 , 29 , 30 ]. Children with heritable tumor predisposition syndrome carry the risk of developing further second primary malignancies (SPM) related to high mortality [ 31 ].…”

Section: Introductionmentioning

confidence: 99%

Eye Tumors in Childhood as First Sign of Tumor Predisposition Syndromes: Insights from an Observational Study Conducted in Germany and Austria

Reschke

Biewald

Bronstein

et al. 2021

Cancers

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Retinoblastoma and other eye tumors in childhood are rare diseases. Many eye tumors are the first signs of a genetic tumor predisposition syndrome and the affected children carry a higher risk of developing other cancers later in life. Clinical and genetic data of all children with eye tumors diagnosed between 2013–2018 in Germany and Austria were collected in a multicenter prospective observational study. In five years, 300 children were recruited into the study: 287 with retinoblastoma, 7 uveal melanoma, 3 ciliary body medulloepithelioma, 2 retinal astrocytoma, 1 meningioma of the optic nerve extending into the eye. Heritable retinoblastoma was diagnosed in 44% of children with retinoblastoma. One child with meningioma of the optic nerve extending into the eye was diagnosed with neurofibromatosis 2. No pathogenic constitutional variant in DICER1 was detected in a child with medulloepithelioma while two children did not receive genetic analysis. Because of the known association with tumor predisposition syndromes, genetic counseling should be offered to all children with eye tumors. Children with a genetic predisposition to cancer should receive a tailored surveillance including detailed history, physical examinations and, if indicated, imaging to screen for other cancer. Early detection of cancers may reduce mortality.

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Cosmetic results of enucleation and/or external beam radiation therapy in 195 retinoblastoma survivors

Cited by 13 publications

References 29 publications

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

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

Feasibility of Proton Beam Therapy as a Rescue Therapy in Heavily Pre-Treated Retinoblastoma Eyes

Eye Tumors in Childhood as First Sign of Tumor Predisposition Syndromes: Insights from an Observational Study Conducted in Germany and Austria

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