Advertisement

Impact of Surgery on the Quality of Life of Caregivers of Children with Congenital Glaucoma

Published:December 22, 2015DOI:https://doi.org/10.1016/j.ophtha.2015.11.013
      Although primary congenital glaucoma (PCG) is a rare disease, it occurs worldwide. Surgery is the mainstay of treatment of PCG, with surgical success rates having improved dramatically over the past few decades to 70% to 80%.
      • Mandal A.K.
      • Netland P.A.
      Initial surgical treatment of congenital glaucoma.
      However, there are few reports of patient-reported outcomes in PCG.
      • Freedman B.L.
      • Jones S.K.
      • Lin A.
      • et al.
      Vision-related quality of life in children with glaucoma.
      • Dada T.
      • Aggarwal A.
      • Bali S.J.
      • et al.
      Caregiver burden assessment in primary congenital glaucoma.
      A diagnosis of a sight-threatening condition such as PCG in a newborn or very young child can have significant psychosocial implications for families, who may experience a range of emotions such as guilt, fear, sadness, anxiety, and grief. These emotions may be further aggravated by stressors such as hospitalization, loss of personal autonomy, family separation, and financial constraints. Furthermore, the operative procedure in children with PCG may also have a significant impact on the social dynamics and routines of the child's parents/family members. It is, therefore, important to capture perspectives from the caregivers of children with PCG, which is the key to patient-centered health care. As part of a larger quality of life (QoL) study of children with PCG and their caregivers, we had previously developed the questionnaire Caregiver's Congenital Glaucoma Quality of Life (CarCGQoL) to assess the QoL of caregivers of children with PCG.
      • Gothwal V.K.
      • Bharani S.
      • Mandal A.K.
      Quality of life of caregivers of children with congenital glaucoma: development and validation of a novel questionnaire (CarCGQoL).
      In this study, we used the CarCGQoL questionnaire to investigate the changes in the QoL of caregivers of children with PCG after glaucoma surgery.
      To read this article in full you will need to make a payment

      Subscribe:

      Subscribe to Ophthalmology
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Mandal A.K.
        • Netland P.A.
        Initial surgical treatment of congenital glaucoma.
        in: Mandal A.K. Netland P.A. The Pediatric Glaucomas. Elsevier Butterworth Heinemann, Philadelphia2006
        • Freedman B.L.
        • Jones S.K.
        • Lin A.
        • et al.
        Vision-related quality of life in children with glaucoma.
        J AAPOS. 2014; 18: 95-98
        • Dada T.
        • Aggarwal A.
        • Bali S.J.
        • et al.
        Caregiver burden assessment in primary congenital glaucoma.
        Eur J Ophthalmol. 2013; 23: 324-328
        • Gothwal V.K.
        • Bharani S.
        • Mandal A.K.
        Quality of life of caregivers of children with congenital glaucoma: development and validation of a novel questionnaire (CarCGQoL).
        Invest Ophthalmol Vis Sci. 2015; 56: 770-777
        • Massof R.W.
        The measurement of vision disability.
        Optom Vis Sci. 2002; 79: 516-552