Health-related quality of life in parents of children with intermittent exotropia

Yamada, Tomohiko; Hatt, Sarah R.; Holmes, Jonathan M.

doi:10.1016/j.jaapos.2010.11.020

Cited by 41 publications

(36 citation statements)

References 12 publications

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“…Because, in the present study, we aimed to primarily assess the association between HRQOL and strabismus surgery we included only patients with HRQOL data using the previously described intermittent exotropia HRQOL questionnaire (IXTQ). 6–8 From mid-2008, we aimed to administer the IXTQ to all children with intermittent XT, minimizing selection bias. IXTQ data were collected as part of a research protocol and were not directly reviewed by the care provider, nevertheless we assumed that any concerns were also expressed to the care provider and that the IXTQ would simply provide a standardized measure of these concerns.…”

Section: Methodsmentioning

confidence: 99%

Associations between Health-Related Quality of Life and the Decision to Perform Surgery for Childhood Intermittent Exotropia

et al. 2014

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Objective To assess associations between health-related quality of life (HRQOL) and the decision to perform strabismus surgery for children with intermittent exotropia (XT). Design Retrospective chart review Participants Children with intermittent XT Methods Included subjects, identified in a clinical practice, had assessment of HRQOL using the intermittent exotropia questionnaire (IXTQ), comprising Child, Proxy and Parent components (Parent domains: Function, Psychosocial, Surgery). IXTQ scores were evaluated for association with surgery, along with standard clinical measures: prism and alternate cover test (PACT), stereoacuity, and control score (mean of the 3 most recent scores). Included data were from preoperative (surgical cohort), or most recent follow-up (non-surgical cohort) examinations. Univariate and multivariate logistic regression analyses were performed and relative risk (RR) ratios calculated. Spearman rank correlations were calculated to identify highly correlated items. Main outcome measures Association of individual factors with the decision to perform surgery, calculated using relative risk ratios. Results 106 children with intermittent XT (median age 6, range 2 to 16 years) were eligible for inclusion. 19 (18%) of 106 underwent surgery. Using all available data, IXTQ Proxy score, IXTQ Parent-Function score, IXTQ Parent-Psychosocial score, distance control score, near control score, near PACT, and Preschool Randot stereoacuity were associated with undergoing surgery (P<0.1). 69 of 106 patients had complete data on all factors identified in univariate analysis and were included in multivariate analyses. 14 (20%) of these 69 underwent surgery. In multivariate analyses poor distance control score (RR 1.83, confidence interval [CI] 1.25, 2.68) and reduced IXTQ Parent-Function score (RR 0.96, CI 0.92, 0.99) were associated with surgical intervention. Repeat multivariate analyses retaining only one of highly correlated items showed IXTQ Proxy IXTQ Parent-Psychosocial, larger near PACT and worse near control were also associated with surgery. Conclusions After accounting for poorer exodeviation control at distance, reduced Parent and Proxy HRQOL were associated with undergoing strabismus surgery for childhood intermittent XT. Recognizing reduced parental HRQOL may be important, with a possible role for educational or counselling interventions.

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Section: Methodsmentioning

confidence: 99%

Associations between Health-Related Quality of Life and the Decision to Perform Surgery for Childhood Intermittent Exotropia

et al. 2014

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“…In order to formally measure HRQOL in this population, we previously developed and validated the Intermittent Exotropia Questionnaire (IXTQ), a patient-derived HRQOL instrument for children with intermittent exotropia (XT). (Hatt et al., 2010a, Hatt et al, 2010b, Yamada et al, 2011a, Yamada et al, 2011b) In our previous initial study, Child IXTQ and Proxy IXTQ scores were found to be lower (worse HRQOL) in children with intermittent XT than in normal controls, (Hatt et al, 2010a) nevertheless, responses to individual questionnaire items have not been studied. The purpose of the present study was to assess responses to individual items on Child and Proxy IXTQ on a larger cohort of patients than used in the original validation studies in order to evaluate the impact of specific HRQOL concerns in children with intermittent XT.…”

Section: Introductionmentioning

confidence: 93%

Specific Health-Related Quality of Life Concerns in Children with Intermittent Exotropia

2012

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Purpose To assess the frequency of specific health-related quality of life (HRQOL) concerns in children with intermittent exotropia (XT) using the Intermittent Exotropia Questionnaire (IXTQ). Methods 80 children with intermittent XT (aged 5 to <17 years), plus one parent for each child, completed the Child and Proxy IXTQ respectively. Each item was scored from 0 to 100 (worst to best HRQOL). Mean scores were calculated for each item and items were ranked from lowest to highest impact (worst HRQOL). Analysis was repeated for sub-groups of 5- to <8- (n=46) and 8- to <17- (n=34) year olds. Results Highest impact Child IXTQ items were: “It bothers me that I have to shut one eye when it is sunny,” “I worry about my eyes,” and “It bothers me because I have to wait for my eyes to clear up.” Highest impact Proxy IXTQ items were: “It bothers my child because he/she has to shut one eye when it is sunny” and “My child worries about his/her eyes.” Lowest impact Child and Proxy items were “My eyes make it hard to make friends,” and “Kids tease me because of my eyes.” Ranking of items was similar for younger and older children. Conclusions The greatest HRQOL concerns for children with intermittent XT were shutting one eye when sunny, waiting for their eyes to clear up, and worrying about their eyes. Items related to teasing and making friends were of least concern. Evaluation of HRQOL concerns using the IXTQ may be helpful in the clinical care of individual patients.

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“…1,3,10 We have created conversion tools using Excel spreadsheets (Microsoft Inc) to easily convert raw IXTQ responses to Rasch-scaled responses and have made them available online (http://pedig.jaeb.org/). In addition to logit values, the lookup tool converts each Rasch person measure from a logit value to a 0 to 100 value (0 indicating worst HRQOL and 100 indicating best HRQOL) through a linear transformation of the person scores.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of the Intermittent Exotropia Questionnaire Using Rasch Analysis

Leske¹,

Holmes²,

Melia³

et al. 2015

JAMA Ophthalmol

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he Intermittent Exotropia Questionnaire (IXTQ) is a patientderived, intermittent exotropia-specific instrument designed to evaluate health-related quality of life (HRQOL) in children with intermittent exotropia and their parents. 1,2 The IXTQ consists of 3 parts: the 12-item child IXTQ (completed by the child to assess the child's HRQOL), the 12-item proxy IXTQ (completed by the parent to assess the child's HRQOL), and the 17-item parent IXTQ (completed by the parent regarding his or her own HRQOL). 1 The child and proxy questionnaires each have a single subscale. The parent questionnaire contains 3 subscales: psychosocial, function, and surgery. The IXTQ is reliable and valid for assessing HRQOL in children with intermittent exotropia. [1][2][3] It is available for download free of charge at http://pedig.jaeb.org/.The IXTQ was originally developed using classical test theory. Rasch analysis may be used to modify and improve existing HRQOL instruments. [4][5][6][7][8][9] In the present study, Rasch analysis was used to refine the existing IXTQ, removing items that do not contribute meaningful information to the instrument and ensuring that response options are properly interpreted. Methods Patient CohortParents gave written informed consent, and children gave written assent when required. The protocol was approved by the institutional review boards of the Mayo Clinic, Jaeb Center for Health Research, and other local sites involved in the study. Data were collected and analyzed in accordance with the Health Insurance Portability and Accountability Act guidelines. The IXTQ was completed by 575 parents of 575 children aged 1 through 16 years with intermittent exotropia at the time of their child's clinic examination, enrolled from May 15, 2008, through July 24, 2013. The 295 children aged 5 years or older completed the age-appropriate child IXTQ. Parents and children completed the IXTQ as part of routine care in the strabismus practice of one of the authors (J.M.H., n = 110) or at the enrollment examination for 1 of 2 ongoing randomized clinical trials being conducted by the Pediatric Eye Disease Investigator Group (NCT 01032603 [n = 69] and NCT 01032330 [n = 396]). Child questionnaires were administered to children aged 5 through 7 years by study personnel. All 8-to 17-year-old child, proxy, and parent questionnaires were self-administered. Patient demographics are reported in eTable 1 in the Supplement. Statistical AnalysisBefore Rasch analysis, items with floor and ceiling effects on the child, proxy, and parent IXTQs were eliminated as described in the eMethods in the Supplement. Rasch analysis was performed on each of the 4 IXTQs using the analytic methods that we have applied previously (eMethods in the Supplement). 9 The performance and structure of the Rasch-IMPORTANCE The Intermittent Exotropia Questionnaire (IXTQ) is a patient, proxy, and parental report of quality of life specific to children with intermittent exotropia. We refine the IXTQ using Rasch analysis to improve reliability and validity.OBSERVATI...

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Health-related quality of life in parents of children with intermittent exotropia

Cited by 41 publications

References 12 publications

Associations between Health-Related Quality of Life and the Decision to Perform Surgery for Childhood Intermittent Exotropia

Associations between Health-Related Quality of Life and the Decision to Perform Surgery for Childhood Intermittent Exotropia

Specific Health-Related Quality of Life Concerns in Children with Intermittent Exotropia

Evaluation of the Intermittent Exotropia Questionnaire Using Rasch Analysis

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