“They've got a lot of needs and I don't think they're being met fully”: A qualitative study of the multi‐professional team approach to the management of children with optic pathway gliomas

Sturgess, Benjamin; Brown, Morven C.; Fraser, Faye; Bailey, Simon

doi:10.1002/pbc.27377

Cited by 6 publications

(6 citation statements)

References 12 publications

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“…Current treatments for progressive symptomatic OPG include chemotherapy, radiation, and surgery for select patients (8). The aim of treatments for OPG increasingly focuses on improving the patient's QOL, such as VA rescue, but information on OPG long-term VA outcome is scant (13,14). The largest study of longterm VA outcomes of OPG was reported by Rakotonjanahary et al (15).…”

Section: Discussionmentioning

confidence: 99%

The Visual Acuity Outcome and Relevant Factors Affecting Visual Improvement in Pediatric Sporadic Chiasmatic–Hypothalamic Glioma Patients Who Received Surgery

et al. 2020

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Background: The role and effectiveness of primary surgical treatment for sporadic chiasmatic-hypothalamic glioma (CHG) are not clear. The present study was to describe sporadic CHG visual acuity (VA) outcomes after surgery and to analyze the relevant factors affecting VA improvement. Methods: Forty-five pediatric sporadic CHG patients who met the inclusion criteria were included in a retrospective study. All patients received primary intratumor partial resection. Disease characteristics, treatment strategies, complications, and VA outcome were analyzed. Univariate and multivariate analyses were performed to identify relevant factors of VA improvement. Receiver operating characteristic (ROC) analysis was performed to evaluate the predictive accuracy of measurement indexes. Results: There were 77 eyes of 45 children suffering from various levels of VA impairment before surgical treatment, and only 13 eyes had normal vision. Patients with resection extents >70, 50-70, and <50% accounted for 26.67, 24.44, and 48.89%, respectively. The percentages of VA maintained and deteriorated in normal vision eyes were 61.54 and 38.46%. The percentages of VA improved, maintained, and deteriorated in visually impaired eyes after surgery were 29.87, 45.45, and 24.68%, respectively. There was a positive correlation between the IVA level and VA improvement. There was no significant difference in VA improvement between the different resection extents. Blindness occurred in ∼4.4%. Approximately 11.1% of the children had complications that affected quality of life, which correlated with resection extent. IVA and tumor size were correlated with VA improvement. The AUC for IVA + tumor size predicting VA improvement was 0.831. The cutoff points for IVA level and tumor volume were 4.5 and 43.50 cm 3 , respectively. Conclusions: IVA and tumor size were correlated with VA improvement after primary intratumor partial resection. Children with IVA ≥ level 5 were more likely to achieve visual Liao et al. Vision Outcomes of Pediatric CHG improvement after decompression surgery, but decompression had limited effectiveness on vision improvement in patients with tumor volumes ≥ 43.50 cm 3. Performing resections < 50% was safe and did not reduce the effect of decompression to improve VA.

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Section: Discussionmentioning

confidence: 99%

The Visual Acuity Outcome and Relevant Factors Affecting Visual Improvement in Pediatric Sporadic Chiasmatic–Hypothalamic Glioma Patients Who Received Surgery

et al. 2020

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“…The second main theme reflects the participants’ perceived barriers to quality follow‐up care at a system level. These barriers—challenges around communication and coordination, a lack of knowledge and a fragmented system, are similar to those identified by British HCPs regarding follow‐up care for optic pathway glioma and other childhood cancer survivors (Berg, Stratton, Esiashvili, Mertens, & Vanderpool, 2016; Sturgess et al, 2018). This indicates that fragmentation of services can be a common problem, independent of diagnosis, across different healthcare systems.…”

Section: Discussionmentioning

confidence: 62%

“…HCPs regarding follow-up care for optic pathway glioma and other childhood cancer survivors (Berg, Stratton, Esiashvili, Mertens, & Vanderpool, 2016;Sturgess et al, 2018). This indicates that fragmentation of services can be a common problem, independent of diagnosis, across different healthcare systems.…”

Section: Discussionmentioning

confidence: 99%

Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers’ experiences with follow‐up care after paediatric brain tumour

Ålykkja

Larsen

Vatne³

et al. 2020

Eur J Cancer Care

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Paediatric brain tumours (PBT) are the second most common type of cancer in children, with a current average five-year survival rate to 75%, largely thanks to great improvements in treatment (Ward et al., 2014). This results in a growing population of PBT survivors, many whom are at high risk of extended early-onset and late effects compared to other childhood cancer survivors (Turner et al., 2009). Radiation therapy directed towards the developing brain is associated with a high risk of experiencing progressive neurocognitive, physical, psychological and psychosocial decline (Turner et al., 2009). Neurocognitive late effects include problems related to

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“…Optic pathway/hypothalamic gliomas (OP/HGs) are a unique entity within pediatric low‐grade gliomas (LGGs), with favorable outcomes measured in standard end points including overall survival (90%‐100% at 5 years); however, these tumors carry significant risk of visual impairment 1,2 . As 50% to 70% of cases are associated with neurofibromatosis type 1 (NF1), decision‐making is not clear in sporadic variants 3 …”

Section: Introductionmentioning

confidence: 99%

“…Given the long‐term survival of most of these patients, a major concern is how delaying definitive RT may cause loss of functional vision, substantially burdening the patient, family, and society 3 . We propose using a meaningful end point, blindness‐free survival (BFS) for future clinical trials.…”

Section: Introductionmentioning

confidence: 99%

Early radiotherapy preserves vision in sporadic optic pathway glioma

Hanania

Paulino

Ludmir

et al. 2021

Cancer

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BACKGROUND Sporadic optic pathway/hypothalamic gliomas represent a unique entity within pediatric low‐grade glioma. Despite favorable survival, location makes treatment difficult and local progression debilitating. This study is a longitudinal assessment of visual acuity (VA) among children treated within the last 2 decades. METHODS Clinical characteristics were abstracted for patients treated from 2000 to 2018 at Texas Children's Cancer Center in Houston. Ophthalmologic data taken at 3‐ to 6‐month intervals were examined with age‐appropriate VA metrics converted to the LogMAR (logarithm of the minimum angle of resolution) scale. Kaplan‐Meier blindness‐free survival (BFS) curves, calculated as time‐to‐bilateral functional blindness (LogMAR ≥0.8 in both eyes), were calculated for patients receiving early radiation therapy (RT; upfront or as first‐line salvage treatment) or chemotherapy (CT) and evaluated using the log‐rank test. RESULTS Thirty‐eight patients with a median follow‐up of 8.5 years (range, 2‐17 years) were identified. Median age at diagnosis was 3 years (interquartile range, <1‐6 years). Early RT was administered in 11 patients (29%). Twenty‐seven patients (71%) were treated primarily with CT, initiated at a median age of 3.5 years (range, <1‐11 years). Eight patients in the CT group did eventually require RT secondary to VA loss and following multiple lines of CT. Median age at RT for all patients was 11 years (range, 3‐17 years). BFS rates were 81% at 5 years and 60% at 8 years for CT and 100% at 5 and 8 years for early RT (P = .017). CONCLUSIONS In a contemporary cohort, early RT, defined as initial or first‐line salvage therapy, was found to have superior BFS for appropriately selected patients with sporadic optic pathway/hypothalamic gliomas. LAY SUMMARY Children with low‐grade brain tumors of the optic pathway generally have excellent long‐term survival; however, given the location of these tumors, there can commonly be threatened vision if the tumor grows. Although radiation is generally deferred in children on the basis of legitimate concerns regarding the effects on the developing brain, it may represent a vision‐preserving therapy for well‐selected older patients.

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“They've got a lot of needs and I don't think they're being met fully”: A qualitative study of the multi‐professional team approach to the management of children with optic pathway gliomas

Abstract: There are many challenges to MPT members providing holistic care to patients with OPGs. As no OPG clinical practice guidelines currently exist, it is suggested that the above recommendations be piloted with evaluation to validate their use.

Cited by 6 publications

References 12 publications

The Visual Acuity Outcome and Relevant Factors Affecting Visual Improvement in Pediatric Sporadic Chiasmatic–Hypothalamic Glioma Patients Who Received Surgery

The Visual Acuity Outcome and Relevant Factors Affecting Visual Improvement in Pediatric Sporadic Chiasmatic–Hypothalamic Glioma Patients Who Received Surgery

Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers’ experiences with follow‐up care after paediatric brain tumour

Early radiotherapy preserves vision in sporadic optic pathway glioma

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