FP407 : Long Term Caregiver’s Quality of Life Following Congenital Glaucoma Surgery

Mandal A K, M04066

Anil K Mandal,1 Seelam Bharani 2, Vijaya K Gothwal2,3

 L V Prasad Eye Institute, Hyderabad, India

Corresponding Author: Anil K Mandal, MD, Fax: +91-040-23548271; Email: mandal@lvpei.org

Conflict of Interest: The authors have no proprietary or financial interest in any of the techniques or devices used in this study.

 Introduction

Primary congenital glaucoma (PCG) is mostly inherited as an autosomal recessive disorder. It is usually seen in the age group of birth to 3 years. The prevalence of PCG has been estimated to be 1/3300 newborns in the Indian state of Andhra Pradesh1 which is much higher than the prevalence of 1/10,000 newborns in the Caucasian populations.2 Due to elevated intraocular pressure (IOP), untreated PCG results in severe visual loss and blindness. The main stay of treatment is surgery for this blinding disease.3, 4 Outcomes following PCG surgery have traditionally been measured in terms of control of IOP, but the impact of the PCG on the caregivers is largely unknown. Recently, we developed the Congenital Glaucoma Caregiver’s Quality of Life (CarCGQoL) questionnaire and used it to investigate the impact of PCG on the QoL of caregivers.5 We found that the caregivers’ QoL improved significantly following 6-8 weeks of PCG surgery of their child.6 However caregivers’ QOL might fluctuate over time because the patients’ statuses change after treatment or natural recovery. The longitudinal change in QOL over time in caregivers of children with PCG is unknown. The aim of this study was to investigate whether the caregivers’ QoL changes over 2 years following glaucoma surgery in their children with PCG.

Patients and Methods  

Caregivers of children operated upon for PCG between December 2012 and July 2014 at the L V Prasad Eye Institute (LVPEI), Hyderabad, India and who returned for long term follow-up clinical assessments (>8 weeks) at the hospital were invited to participate in this study. The study details have been described by us in detail elsewhere.6 We excluded those caregivers whose children underwent repeat glaucoma surgeries or any other intraocular procedures following the initial glaucoma surgery. All norms relating to ethics and consent were adhered to.

All the children underwent examination under anaesthesia (EUA) for a detailed ocular assessment. Caregivers were administered the 20-item CarCGQoL questionnaire by trained research assistants who administered the questionnaire (before the EUA) To control for bias, we used research assistants who did not participate in any of the clinical treatment of the patients. In addition to the administration of the CarGQoL questionnaire, certain demographic details were also recorded from the caregivers: child’s age, caregiver’s age, occupation, employment status, etc.

Surgical Procedure

All the patients underwent combined trabeculotomy-trabeculectomy (CTT) for the PCG in the affected eye. Those with bilateral PCG underwent simultaneous CTT in both eyes. This surgical procedure has been described by us in detail previously.4

Caregiver’s Quality of Life

The CarCGQoL. The development and validation of the CarCGQoL using Rasch analysis has been reported by us previously.5 The final version consists of 20 items that are rated on a three-category response format.

Statistical Analysis

Data analysis was carried out with the SPSS Statistics (IBM, Armonk, NY). Descriptive statistical analyses were performed to characterize the participant’s socio-demographic, clinical and QoL data. The unit of analysis for QoL data was the participant. The primary outcome was the improvement in the CarCGQoL score following CTT. Rasch-scaled scores were used to analyze the CarCGQoL data and the unit was logits. Negative CarCGQoL score indicates lower (worse) QoL.

Results 

Demographic and Clinical Characteristics

Eighty seven of the 111 (78%) original sample of caregivers completed the CarCGQoL questionnaire at 2 years postoperatively. As in the previous study, the majority were mothers (n= 82; 94%) with a mean (SD) age of 25.5 (4.3) years (range, 20-41 years). A little-less than one-third of the caregivers (n=27, 31%) reported lower educational levels (primary education or below). Most of the caregivers were not working. The mean age of the children with PCG at surgery was 5.7 months (range, 8 days to 66 months; median, 4 months) and more than one-half of the children were male. One-half of the children were first-born child and the majority had congenital variety of the disease (73%). The most common chief presenting symptom among children with PCG was hazy appearance of the eye (50%) followed by enlarged size of the eyeball (14%). Overall, 41% had mild form of PCG, 41% had moderate and 18% had severe forms of PCG.

The mean (SD) age of the children in this study was 33.7 (8.8) months. There was a statistically significant reduction (50.5%) in the IOP postoperatively (2 years) [26.7 ± 5.5 vs 13.2 ± 3.8 mmHg, P<0.0001). Postoperatively, corneas were clear in 87% of the eyes. Surgical success (complete plus qualified) (IOP<21mmHg) could be achieved in 98.8% of the patients.

Caregiver’s Quality of Life

There was a significant and large improvement in the caregiver’s QoL (effect size=1.07) at 2 years following glaucoma surgery (Figure 1). Table 1 compares the CarCGQoL score at preoperative and postoperative visits.

Table 1: Comparison of Caregiver’s Quality of life before and after PCG surgery (n=87) 

Variable Preoperative

(mean ± SD)

(logits)

6-8 weeks Postoperative

(mean ± SD)

(logits)

2 years Postoperative

(mean ± SD)

(logits)

CarCGQoL score -0.09 ± 1.30 0.88 ± 1.60 2.13 ± 2.29
Effect size 0.97 1.07
CarCGQoL – Caregiver’s quality of life questionnaire; Negative score – lower quality of life

Logits- log-odds (unit used in Rasch analysis)

Figure 1: Box-and-whisker plot of preoperative and postoperative scores of quality of life of caregivers of children with PCG (n=87) using the CarCGQoL questionnaire. The boxes contain the interquartile range and the line running across the centre of each box represents the median (see Table 1 for details).

Discussion 

Our results have demonstrated that surgical procedure (CTT) causes major improvements (more than two-fold) in the caregiver’s QoL postoperatively, together with control of their child’s IOP and restoration of corneal clarity. This was further evidenced by large effect size in the CarCGQoL 2 years postoperatively. To the best of our knowledge, this is the first-of-its kind report in the literature and given this, we are limited in the comparison of our results of caregiver’s QoL. More importantly, the results of our study add to the body of evidence in the field of patient/person reported outcomes in ophthalmology, particularly pediatric ophthalmology.

The baseline (preoperative) CarCGQoL data revealed that the caregivers exhibited significant emotional disturbances such as depression, guilt and anxiety around the time of diagnosis of their child’s PCG. This is in accordance with an earlier study from North India.7 However, the baseline CarCGQoL scores did not vary as a function of severity of the child’s PCG in our sample. However, the initial emotional turbulence among caregivers is followed by realization of the chronicity of the disease process, as well as the often overwhelming immediate post-operative adjustments that occurs within the patient’s family dynamic. Coupled with good surgical outcome, such adjustments may have resulted in improvement of the CarCGQoL scores 2 years postoperatively in our study. These results support the hypothesis that poor QoL among caregivers of children with PCG is a consequence of their child’s glaucoma, and can be meaningfully improved by CTT. Furthermore, it is evident that CTT is effective in reducing the IOP and restoring corneal clarity in our patient population

Strengths of this study are its prospective design allowing the examination of time trends, highly standardized assessment of the caregiver’s QoL with the focus on caregiver, an indispensable component of effective and compassionate care in PCG. More importantly we used interval level CarCGQoL scores which legitimize use of parametric statistical tests for comparison of preoperative and postoperative CarCQoL data. Such robustness ensures that valid conclusions can be made from the data presented.

In conclusion, successful PCG surgery can improve not only the clinical condition, but also the caregiver’s QoL. Quality of life of the caregiver improves regardless of the severity or laterality of his/her child’s PCG. These findings call for further investigation of the caregiver’s QoL in PCG and for its inclusion in the glaucoma specialists’ treatment plan and PCG surgery outcome measures.

References

  1. Dandona L, Williams JD, Williams BC, Rao GN. Population-based assessment of childhood blindness in southern India. Arch Ophthalmol 1998;116:545-546.
  2. Francois J. Congenital glaucoma and its inheritance. Ophthalmolgica 1972;181:61-73.
  3. Mandal AK, Chakrabarti D. Update on congenital glaucoma. Indian J Ophthalmol 2011;59 Suppl:S148-157.
  4. Mandal AK, Gothwal VK, Bagga H, Nutheti R, Mansoori T. Outcome of surgery on infants younger than 1 month with congenital glaucoma. Ophthalmology 2003;110:1909-1915.
  5. Gothwal VK, Bharani S, Mandal AK. 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.
  6. Gothwal VK, Bharani S, Mandal AK. Impact of Surgery on the Quality of Life of Caregivers of Children with Congenital Glaucoma. Ophthalmology 2016;123:1161-1162.
  7. Dada T, Aggarwal A, Bali SJ, Wadhwani M, Tinwala S, Sagar R. Caregiver burden assessment in primary congenital glaucoma. Eur J Ophthalmol 2013;23:324-328.

 

 

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