Parents’ Perspective of Quality of Life of Retinoblastoma Survivors

Batra, Atul; Kain, Raman; Kumari, Mamta; Paul, Reeja; Dhawan, Deepa; Bakhshi, Sameer

doi:10.1002/pbc.25982

Cited by 15 publications

(26 citation statements)

References 16 publications

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“…Moreover, our results indicate that survivors of RB with monocular vision, who did not have motor deficits, also tended to have lower physical and social QOL compared with the typically developing children. These results are congruent with several previous studies showing that survivors of childhood RB have a lower QOL 25,26.…”

supporting

confidence: 93%

The impact of monocular vision on motor function and quality of life in survivors of retinoblastoma

Weintraub

Reshef

Pe’er

et al. 2019

Pediatric Blood & Cancer

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Background Monocular vision has been found to have a negative effect on children's motion processing and motor functions. Yet, knowledge of motor function of survivors of retinoblastoma (RB) with monocular vision (due to enucleation, for example) is limited. This study examined motor function and its relationship to visual‐related and health‐related quality of life (HRQOL) in survivors of RB with monocular vision. Procedure Parents of 27 survivors of RB, who underwent an enucleation of one eye resulting in monocular vision, and of 21 typically developing children between the ages of 6 and 12, were administered questionnaires relating to their children's motor function (DCDQ), as well as vision‐related function (CVFQ) and HRQOL (PedsQL). Results Of the 27 survivors of RB, 7 (25.6%) were found to have difficulties in motor functions, compared with 1 (4.8%) child in the control group. The difficulties were faced mainly in daily function requiring control during movement, including jumping, running, and ball playing. Additionally, significant correlations were found between motor functions and children's QOL. Finally, survivors of RB with monocular vision were found to have lower QOL, specifically physical‐ and school‐related QOL. Conclusion Survivors of RB who have monocular vision have a higher rate of decreased motor function and lower QOL. These results point to a need for ongoing assessment of survivors of RB to allow timely detection of motor deficits and to institute appropriate therapeutic interventions.

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supporting

confidence: 93%

The impact of monocular vision on motor function and quality of life in survivors of retinoblastoma

Weintraub

Reshef

Pe’er

et al. 2019

Pediatric Blood & Cancer

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“…In addition, patients not only have to withstand a delay in visuo-motor integration in comparison with their healthy peers (Ross et al, 2001), but also a life-long fear of developing recurrences, second primary malignancies, further loss of vision and passing on the disease to their offspring (van Dijk et al, 2010). When parents had to compare the quality of life of their affected children with healthy siblings, their report was significantly worse regarding the former (Batra et al, 2016a). A study comparing self (child)versus parental evaluation of health-related quality of life showed that parents reported worse on emotional domains (Batra et al, 2016b).…”

Section: Evaluation Of Quality Of Lifementioning

confidence: 99%

Conservative management of retinoblastoma: Challenging orthodoxy without compromising the state of metastatic grace. “Alive, with good vision and no comorbidity”

Munier

Beck‐Popovic

Chantada

et al. 2019

Progress in Retinal and Eye Research

160

157

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Retinoblastoma is lethal by metastasis if left untreated, so the primary goal of therapy is to preserve life, with ocular survival, visual preservation and quality of life as secondary aims. Historically, enucleation was the first successful therapeutic approach to decrease mortality, followed over 100 years ago by the first eye salvage attempts with radiotherapy. This led to the empiric delineation of a window for conservative management subject to a "state of metastatic grace" never to be violated. Over the last two decades, conservative management of retinoblastoma witnessed an impressive acceleration of improvements, culminating in two major paradigm shifts in therapeutic strategy. Firstly, the introduction of systemic chemotherapy and focal treatments in the late 1990s enabled radiotherapy to be progressively abandoned. Around 10 years later, the advent of chemotherapy in situ, with the capitalization of new routes of targeted drug delivery, namely intra-arterial, intravitreal and now intracameral injections, allowed significant increase in eye preservation rate, definitive eradication of radiotherapy and reduction of systemic chemotherapy. Here we intend to review the relevant knowledge susceptible to improve the conservative management of retinoblastoma in compliance with the "state of metastatic grace", with particular attention to (i) reviewing how new imaging modalities impact the frontiers of conservative management, (ii) dissecting retinoblastoma genesis, growth patterns, and intraocular routes of tumor propagation, (iii) assessing major therapeutic changes and trends, (iv) proposing a classification of relapsing retinoblastoma, (v) examining treatable/preventable disease-related or treatment-induced complications, and (vi) appraising new therapeutic targets and concepts, as well as liquid biopsy potentiality.

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“…The current study investigated the feasibility of RetinoQuest in clinical practice. Earlier studies have shown that computer-assisted data collection on HRQoL data is feasible in daily clinical practice [ 4 , 5 , 12 – 17 , 19 , 22 , 29 ]. In line with the findings of de Bree et al [ 14 ], we showed that RetinoQuest is a feasible e-health application to monitor HRQoL in Rb survivors in clinical practice.…”

Section: Discussionmentioning

confidence: 99%

“…Other concerns relate to recurrence of the disease, passing Rb to offspring, second primary tumors, restrictions in education and professional career, mobility, self-care, and relationships [ 3 – 8 ]. Furthermore, the parents’ ability to cope with the stress associated with diagnosis, treatment, and heredity impacts the psychosocial functioning and development of their affected child [ 2 , 7 , 9 – 12 ].…”

Section: Introductionmentioning

confidence: 99%

Feasibility of RetinoQuest: e-health application to facilitate and improve additional care for retinoblastoma survivors

et al. 2017

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PurposeThe current study aimed to evaluate the feasibility of RetinoQuest in clinical practice, from survivors and healthcare professionals’ (HCPs) point of view.MethodsRetinoQuest is a touch screen computer program to monitor health-related quality of life (HRQoL) of retinoblastoma survivors via patient-reported outcome measures (PROMs) targeting children (4–10 years) as evaluated by their parents (proxy measures), adolescents (11–18 years), and adults. Feasibility was evaluated by the actual time taken to complete the PROMs, acceptability of the time as perceived by the users, the content of PROMs in RetinoQuest, and overall satisfaction with RetinoQuest.ResultsNinety-six survivors participated: 41 parents of children, 38 adolescents, and 17 adults. Mean time to complete the evaluation form was 7.8 min (median 6.7, range 2.4–24.5), and 90% of the users stated that the time needed to complete PROMs in RetinoQuest was acceptable. The majority of users reported that it was important to answer the questions (88% of the parents, 66% of the adolescents, and 76% of the adult survivors) and that all important issues were covered, e.g., no missing questions (78, 84, and 76%, respectively). Satisfaction rate was high, 7.8 according to parents, 8.1 according to adolescents, and 7.7 for adults.ConclusionsRetinoQuest is a feasible e-health application to monitor HRQoL in retinoblastoma survivors in clinical practice.Implications for cancer survivorsThis tool allows for open and structured communication which can lead to early detection of psychosocial impacts on quality of life and referral of the retinoblastoma survivors.Electronic supplementary materialThe online version of this article (10.1007/s11764-017-0642-z) contains supplementary material, which is available to authorized users.

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Parents’ Perspective of Quality of Life of Retinoblastoma Survivors

Cited by 15 publications

References 16 publications

The impact of monocular vision on motor function and quality of life in survivors of retinoblastoma

The impact of monocular vision on motor function and quality of life in survivors of retinoblastoma

Conservative management of retinoblastoma: Challenging orthodoxy without compromising the state of metastatic grace. “Alive, with good vision and no comorbidity”

Feasibility of RetinoQuest: e-health application to facilitate and improve additional care for retinoblastoma survivors

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