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%.
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
- 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.
Published online: December 22, 2015
Financial Disclosure(s): The authors have no proprietary or commercial interest in any materials discussed in this article.
Supported in part by Hyderabad Eye Research Foundation, Hyderabad, India.
Conception and design: Mandal, Gothwa
Analysis and interpretation: Mandal, Gothwal, Bharani
Data collection: Mandal, Gothwal, Bharani
Obtained funding: Not applicable
Overall responsibility: Mandal, Gothwal, Bharani
© 2015 American Academy of Ophthalmology. Published by Elsevier Inc.