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Vision specific quality of life in children with optic pathway gliomas

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Abstract

Children with optic pathway gliomas (OPGs) frequently experience vision loss from their tumors. Most pediatric OPG research has focused on radiographic and visual outcomes, yet the impact of vision loss on quality of life (QOL) in children with OPGs has not been studied. The present study prospectively recruited children ≤10 years of age with sporadic or neurofibromatosis type 1 (NF1)-related OPGs. Vision specific QOL was assessed by parent proxy using the Children’s Visual Function Questionnaire (CVFQ), and scores were analyzed according to magnitude of visual acuity (VA) loss and presence of visual field (VF) loss. Thirty-six subjects completed the study (53 % female) with median age of 4.6 years. Children with mild, moderate and severe vision loss have lower CVFQ subscale scores, indicating a lower vision specific QOL, compared to those with normal vision. Lower Competence scores were noted in participants with more profound vision loss (p < 0.05), reflecting a decreased ability to complete activities of daily living (e.g., feeding, grooming). Children with two visually impaired eyes were rated as having greater difficulty with social interactions and pleasurable activities (Personality subscale, p = 0.039) compared to those with only one impaired eye. In summary, our findings demonstrate that children with vision loss secondary to their OPG have a decreased vision specific QOL compared to those with normal vision. Measuring vision specific QOL may be considered a meaningful secondary outcome measure for pediatric OPG clinical trials.

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Acknowledgments

This article was supported by the National Eye Institute/National Institutes of Health grant K23 EY022673 (Dr. Avery), the National Institutes of Health/National Eye Institute Pediatric Research Loan repayment program (Dr. Avery), and the Gilbert Family Neurofibromatosis Institute (Drs. Avery and Hardy). The authors thank Natalie Glaug for assistance with study recruitment and data collection.

Conflict of interest

The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Department of Neurology, Children’s National Medical Center, 111 Michigan Ave, NW, Washington, DC, 20010, USA

    Robert A. Avery

  2. Department of Ophthalmology, Children’s National Medical Center, Washington, DC, USA

    Robert A. Avery

  3. Department of Pediatrics, Children’s National Medical Center, Washington, DC, USA

    Robert A. Avery

  4. Department of Neuropsychology, Children’s National Medical Center, Washington, DC, USA

    Kristina K. Hardy

  5. Gilbert Family Neurofibromatosis Institute, Children’s National Medical Center, Washington, DC, USA

    Robert A. Avery & Kristina K. Hardy

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  1. Robert A. Avery
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Correspondence to Robert A. Avery.

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Avery, R.A., Hardy, K.K. Vision specific quality of life in children with optic pathway gliomas. J Neurooncol 116, 341–347 (2014). https://doi.org/10.1007/s11060-013-1300-6

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  • DOI: https://doi.org/10.1007/s11060-013-1300-6

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