Elsevier

Ophthalmology

Volume 117, Issue 1, January 2010, Pages 163-168.e1
Ophthalmology

Original article
Development and Initial Validation of Quality-of-Life Questionnaires for Intermittent Exotropia

Presented in part at: Association for Vision and Research in Ophthalmology Annual Meeting, May 2009, Fort Lauderdale, Florida.
https://doi.org/10.1016/j.ophtha.2009.06.038Get rights and content

Purpose

The development and initial validation of patient-derived, health-related quality-of-life (HRQOL) questionnaires for intermittent exotropia (IXT).

Design

Cross-sectional study.

Participants

In a development phase, 27 children (age, 2–17 years) with IXT and 1 of their parents. In an initial validation phase, 33 children with IXT and 49 control children (age, 5–17 years), along with 1 parent for each child. Children in the control group had no strabismus or amblyopia.

Methods

Individual patient interviews generated 35 items for child and proxy (parental assessment of child's HRQOL) questionnaires and 46 items for a parent questionnaire. To reduce to a feasible number of items, questionnaires were administered to 5- to 17-year-old children with IXT (n = 15) and parents of 2- to 17-year-old children with IXT (n = 27). Responses were analyzed using standard item reduction methodology. Three final derived IXT questionnaires (IXTQ): child, proxy, and parent (12, 12, and 17 items, respectively) were administered to children with IXT and control children and to parents of IXT and control children. Likert-type scales ranging from never (100, best HRQOL) to almost always (0, worst HRQOL) were used.

Main Outcome Measures

Median scores for IXT and control groups, compared using Wilcoxon tests.

Results

Median child scores were significantly lower (worse HRQOL) in the IXT group compared with the control group: 85 (quartiles, 73–92) versus 92 (quartiles, 79–96; P = 0.04). Median proxy IXTQ scores were significantly lower for IXT children than controls: 83 (quartiles, 75–94) versus 98 (quartiles, 92–100; P<0.0001). Median parent IXTQ scores also were significantly lower in the IXT group compared with the control group: 68 (quartiles, 56–79) versus 93 (quartiles, 87–99; P<0.0001).

Conclusions

A new 3-part patient-derived HRQOL questionnaire for children with IXT and their parents has been developed and validated, comprising child, proxy, and parent questionnaires. These questionnaires detect reduced HRQOL in children with IXT as reported by the children themselves and perceived by their parents (proxy report). Childhood IXT also seems to affect parent HRQOL. The IXTQ HRQOL questionnaires may prove useful in the clinical assessment of IXT and for clinical trials.

Financial Disclosure(s)

The author(s) have no proprietary or commercial interest in any materials discussed in this article.

Section snippets

Patients and Methods

Institutional review board approval was obtained. Each parent gave informed consent and children 8 years and older gave informed assent before participating. All procedures and data collection were conducted in a manner compliant with the Health Insurance Portability and Accountability Act.

Two phases comprising this present study are reported: first, the development of final IXT questionnaires, and second, the initial validation of the newly developed final IXT questionnaires. For both phases

Development of Final Child and Proxy Intermittent Exotropia Questionnaires

Of the 35 original questionnaire items, 10 were removed because 20% or more of either child or proxy responses were not applicable, and an additional 3 items were removed because 80% or more of either child or proxy responses were not at all. There were no negative comments regarding the clarity or wording of questions, and no items were considered potentially unresponsive to, or inappropriate after, treatment; therefore, no items were excluded for these reasons. In total, 13 (37%) of 35 items

Discussion

Using specific concerns identified directly from children with IXT and their parents, a 3-part questionnaire (child, proxy, and parent components) for assessing HRQOL in IXT was developed. Children with IXT showed worse HRQOL (lower scores) than control children when measured using the child IXTQ self-report and when measured using the parental proxy IXTQ report. Parents of children with IXT also showed lower scores when reporting their own HRQOL using the parent IXTQ.

There are limited data on

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Cited by (0)

Manuscript no. 2009-248.

Financial Disclosure(s): The author(s) have no proprietary or commercial interest in any materials discussed in this article.

Supported by the National Institutes of Health, Bethesda, Maryland (grant nos.: EY015799 [JMH], EY018810 [JMH], and EY013844 [EAB]); Research to Prevent Blindness, Inc., New York, New York (JMH as Olga Keith Weiss Scholar and an unrestricted grant to the Department of Ophthalmology, Mayo Clinic); and the Mayo Foundation, Rochester, Minnesota. None of the sponsors or funding organizations had a role in the design or conduct of this research.

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