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

Banerjee, Smita C.; Pottenger, Elaine; Petriccione, Mary; Chou, Joanne F.; Ford, Jennifer S.; Sklar, Charles A.; Robison, Leslie L.; Kleinerman, Ruth A.; Oeffinger, Kevin C.; Francis, Jasmine H.; Abramson, David H.; Dunkel, Ira J.; Friedman, Danielle Novetsky

doi:10.1017/s1478951519000920

Cited by 11 publications

(20 citation statements)

References 34 publications

(54 reference statements)

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“…Perhaps cases with systemic malignancies might have died and were not reported in the registry resulting in the high score for the physical health subgroup. Our outcomes concur with Banerjee et al’s 10 who noted lower levels of positive attitude for future and suggested teaching the patients coping strategies to develop a positive attitude and increase HQL. A Danish study reported higher divorce rates and related stress among individuals who had undergone bilateral enucleation.…”

Section: Discussionsupporting

confidence: 92%

“…The high HQL score noted the current study differs from the HQL reported in other studies. 6,9,10 This could be due to the different assessment tools used to determine HQL. Banerjee et al 10 had assessed both unilateral and bilateral removal of the globe to treat Rb.…”

Section: Discussionmentioning

confidence: 99%

“…6,9,10 This could be due to the different assessment tools used to determine HQL. Banerjee et al 10 had assessed both unilateral and bilateral removal of the globe to treat Rb. This could further artificially increase the HQL as those with unilateral, residual vision are more likely to have better HQL.…”

Section: Discussionmentioning

confidence: 99%

“…7,8 However few publications evaluate HQL in children and young adults who have undergone removal of both eyes. 6,10,11…”

Section: Introductionmentioning

confidence: 99%

“…7,8 However few publications evaluate HQL in children and young adults who have undergone removal of both eyes. 6,10,11 We present the self-reported or parent perceived HQL of individuals who underwent bilateral eye removal for treating Rb at a tertiary eye hospital in Saudi Arabia.…”

Section: Introductionmentioning

confidence: 99%

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Health related quality of life of patients treated with bilateral enucleation for retinoblastoma

Qahtani

AlMasfer

Khandekar

2021

European Journal of Ophthalmology

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Purpose: Bilateral enucleation is rarely used to manage retinoblastoma (Rb). We present the health-related quality of life (HQL) and the associated factors among individuals who underwent bilateral surgical enucleation for retinoblastoma. Methods: Patients were interviewed via telephone in January 2020. A retinoblastoma registry was used to select patients who underwent bilateral enucleation/exenteration during 33 years. Data included age, gender, literacy, occupation, marital status, and health issues. Patients were asked eight questions on HQL. The responses were graded as 0–10. The percentage proportion of the HQL score was correlated to the determinants. Results: Twenty-one out of 24 participants were interviewed (median age, 23 years). Fourteen participants answered the HQL question themselves, and for 7, their parents answered. Twenty patients (95%) had an ocular prosthesis. The median HQL score was 58 (out of a maximum score of 80) (interquartile range (IQR): 49; 70; minimum, 0 and maximum, 74). The HQL score was positively correlated to: self-reporting than parents reporting (Mann Whitney U (MW) p = 0.05); among students versus individuals in other occupations (MW p = 0.03); interval between eye removal and interview ( p = 0.02). Age at enucleation of the second eye ( p = 0.001), students ( p < 0.001), and self-responders ( p < 0.001) were independent predictors of a high HQL score. Conclusions: HQL of individuals having bilateral eye enucleation for retinoblastoma was reasonably good and positively correlated to self-reporting, learning as students to cope and age at 2nd eye removal. Anaplasty services to improve cosmetics seem to benefit such disabled persons.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“…7,8 However few publications evaluate HQL in children and young adults who have undergone removal of both eyes. 6,10,11…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Health related quality of life of patients treated with bilateral enucleation for retinoblastoma

Qahtani

AlMasfer

Khandekar

2021

European Journal of Ophthalmology

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Psychosocial outcomes and quality of life among school‐age survivors of retinoblastoma

Morse

Parris

Qaddoumi

et al. 2022

Pediatric Blood & Cancer

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Background Retinoblastoma is the most common intraocular childhood cancer and is typically diagnosed in young children. With increasing number of survivors and improved medical outcomes, long‐term psychosocial impacts need to be explored. Thus, the current study sought to assess functioning in school‐aged survivors of retinoblastoma. Procedure Sixty‐nine survivors of retinoblastoma underwent a one‐time evaluation of psychosocial functioning. Survivors (Mage = 10.89 years, SD = 1.07 years; 49.3% male; 56.5% unilateral disease) and parents completed measures of quality of life (QoL; PedsQL) and emotional, behavioral, and social functioning (PROMIS [patient‐reported outcome measurement information system] Pediatric Profile, BASC‐2 parent report). Demographic and medical variables were also obtained. Results On the whole, both survivors and caregivers indicated QoL and behavioral and emotional health within the typical range of functioning. Survivors reported better physical QoL compared to both parent report and a national healthy comparison sample, whereas caregivers reported that survivors experienced lower social, school, and physical QoL than a healthy comparison. Regarding behavioral and emotional health, survivors indicated more anxiety than a nationally representative sample. Parents of female survivors endorsed lower adaptive scores than parents of male survivors. Conclusions Results indicated that survivors of retinoblastoma reported QoL and behavioral and emotional health within normal limits, although parents appear to perceive greater impairment across several assessed domains. Understanding both survivor and parent reports remains important for this population. Future research should explore psychosocial functioning of these survivors as they transition to adolescence and early adulthood, given the increased independence and behavioral and emotional concerns during these developmental periods.

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Living with an artificial eye: qualitative insights into patient and family member experiences

Boele,

Kawalek,

Nicklin

et al. 2024

Int Ophthalmol

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Purpose Artificial eye users (AEUs) can experience a negative impact on psychological and emotional wellbeing, including reduced social functioning, which may be a consequence of living with one eye removed, and/or of having a prosthetic eye. This may have wider consequences for their families. We aimed to explore what it means to live with a prosthetic eye, for both AEUs and their families—and how any quality of life (QoL) issues impact on their day-to-day functioning. Methods A subset of AEUs and their family members taking part in a feasibility randomised controlled trial comparing hand-painted to digitally printed artificial eyes were invited for semi-structured interviews. Transcripts were analysed using reflexive thematic analysis. Qualitative results related to trial participation are covered elsewhere. Here, we focus on QoL and day-to-day functioning. Results Twelve AEUs (eight males) and five spouses (one male) who had worn artificial eyes for 2–65 years took part, and four themes were identified. (1) Impact on day-to-day life: AEUs and their spouses have to adapt to (partial) sight loss, reduced levels of confidence, and social withdrawal. (2) Impact on psychological and emotional wellbeing: distress among AEUs and their spouses can be severe and prolonged, highlight unmet support needs. (3) Challenges with treatment experiences: AEUs experienced negative impact of fragmentation of care and long waiting times. (4) Worries about the future: AEUs mentioned fragility of remaining sight, and concerns around potential need for further treatment. Conclusion Patients and their family members experience negative impact of being an AEU on their everyday lives and quality of life. There is a potential role for psychosocial support services in supporting AEUs and their families even long after eye loss.

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

Cited by 11 publications

References 34 publications

Health related quality of life of patients treated with bilateral enucleation for retinoblastoma

Health related quality of life of patients treated with bilateral enucleation for retinoblastoma

Psychosocial outcomes and quality of life among school‐age survivors of retinoblastoma

Living with an artificial eye: qualitative insights into patient and family member experiences

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