Dataset Information

Comparison of quality-of-life instruments in childhood intermittent exotropia.

ABSTRACT: To compare 2 health-related quality-of-life (HRQOL) instruments: the condition-specific Intermittent Exotropia Questionnaire (IXTQ) and the generic Pediatric Quality of Life Inventory (PedsQL) in children with intermittent exotropia.Fifty-one children with intermittent exotropia (median, 7 years; range, 5-16 years) were recruited from outpatient clinics with one of their parents. All children completed age-appropriate Child IXTQ (12 items) and Child PedsQL (23 items). Parents completed parallel Proxy IXTQ and Proxy PedsQL (parent assessment of child's HRQOL). Possible scores ranged from 0 to 100 (worst to best HRQOL). Normal thresholds were defined using the 5th percentile in a control group of 47 normal nonstrabismic children. Proportions scoring below normal on each questionnaire were compared. Median scores in intermittent exotropia and control groups also were compared.More scores were subnormal using Proxy IXTQ than Proxy PedsQL (55% vs 18%, p = 0.0004). When Child questionnaires were used, we found that similar proportions scored below normal (IXTQ 8% vs PedsQL 14%, p = 0.3). Median scores were lower for intermittent exotropia children compared with control patients for Child IXTQ (83 vs 92; p = 0.04), Proxy IXTQ (81 vs 98; p < 0.0001), and Proxy PedsQL (p = 0.04) but not for Child PedsQL (p = 0.3).The Proxy IXTQ detects reduced HRQOL related to intermittent exotropia more often than the Proxy PedsQL. There were few subnormal scores on Child IXTQ and Child PedsQL. Children with intermittent exotropia scored, on average, lower than control patients on the IXTQ, but most individual scores fell within the normal range. The IXTQ may prove useful for clinical assessment of intermittent exotropia.

SUBMITTER: Hatt SR

PROVIDER: S-EPMC2925436 | biostudies-literature | 2010 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Comparison of quality-of-life instruments in childhood intermittent exotropia.

Hatt Sarah R SR Leske David A DA Holmes Jonathan M JM

Journal of AAPOS : the official publication of the American Association for Pediatric Ophthalmology and Strabismus 20100422 3

<h4>Purpose</h4>To compare 2 health-related quality-of-life (HRQOL) instruments: the condition-specific Intermittent Exotropia Questionnaire (IXTQ) and the generic Pediatric Quality of Life Inventory (PedsQL) in children with intermittent exotropia.<h4>Methods</h4>Fifty-one children with intermittent exotropia (median, 7 years; range, 5-16 years) were recruited from outpatient clinics with one of their parents. All children completed age-appropriate Child IXTQ (12 items) and Child PedsQL (23 ite ...[more]

PMID: 20417138

Similar Datasets

Project description:BackgroundIntermittent exotropia (IXT) is the most common form of exotropia in children. In addition to cosmetic effects and loss of stereoscopic function, IXT may negatively impact the psychological well-being of children and their parents. The purpose of this study was to assess the patient-reported outcomes of Chinese children with IXT before and after strabismus surgery.MethodsThe records of children with IXT who underwent strabismus surgery at the Zhongshan Ophthalmic Center of Sun Yat-sen University, China over the period from January 1, 2016 to December 31, 2018 were prospectively recruited. All children underwent ophthalmic and orthoptic examinations, including the prism and alternate cover test, fusion function by synoptophore, stereoacuity and Newcastle control score. Two patient-reported outcome measures were used: the intermittent Exotropia Questionnaire (IXTQ) to measure disease-specific health-related quality of life (HRQOL) and the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression. Patient-reported outcome measurements were made before and after surgery with responses from children and their parents.ResultsA total of 389 children were eligible for inclusion (47.8% male, 52.2% female, mean + SD age = 8.17 ± 2.81). Preoperative IXTQ scores in both children (48.21 ± 26.2) and their parents (44.6 ± 25.68) were significantly correlated with near stereoacuity (P = 0.029 and P = 0.015, respectively). The angle of deviation at near vision showed a negative linear relationship with visual function (P = 0.026) and psychological (P = 0.019) scores as well as opinions regarding surgery (P = 0.024). HADS scores (anxiety scale score: 11 ± 2.92, depression scale score: 10.44 ± 2.9) were also related to near stereoacuity (P < 0.05). After surgery, both children's (74.83 ± 16.59) and parents' (68.57 ± 17.06) IXTQ scores significantly improved (p<0.01). Children's IXTQ scores were related to the angle of deviation at distance, and their psychological and visual function scores showed a negative relationship with the angle of deviation at near vision (P < 0.05).ConclusionChildren and parents' HRQOL and HADS were associated with near stereoacuity. Parents usually attend more readily to the angle of deviation at near in their IXT children. HRQOL improved significantly after surgery and can be used as one of the indices for preoperative evaluation but is not recommended as a criterion for surgical intervention.

Project description:PurposeThe development and initial validation of patient-derived, health-related quality-of-life (HRQOL) questionnaires for intermittent exotropia (IXT).DesignCross-sectional study.ParticipantsIn 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.MethodsIndividual 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 measuresMedian scores for IXT and control groups, compared using Wilcoxon tests.ResultsMedian 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).ConclusionsA 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.

Project description:Engaging patients (parents/families) in treatment decisions is increasingly recognised as important and beneficial. Yet where the evidence base for treatment options is limited, as with intermittent distance exotropia (X(T)), this presents a challenge for families and clinicians. The purpose of this study was to explore how decisions are made in the management and treatment of X(T) and what can be done to support decision-making for clinicians, parents and children.This was a qualitative study using face to face interviews with consultant ophthalmologists and orthoptists, and parents of children with X(T). Interview data were analysed using the constant comparative method.The drivers for clinicians in treatment decision-making for X(T) were the proportion of time the strabismus is manifest and parents' views. For parents, decisions were influenced by: fear of bullying and, to a lesser degree, concerns around the impact of the strabismus on their child's vision. Uncertainty around the effectiveness of treatment options caused difficulties for some clinicians when communicating with parents. Parental understanding of the nature of X(T) and rationale for treatment often differed from that of the clinicians, and this affected their involvement in decision-making. Though there were good examples of shared decision-making and parent and child engagement some parents said the process felt rushed and they felt excluded. Parents reported that clinicians provided sufficient information in consultations but they had difficulties in retaining verbal information to convey to other family members.Overall parents were happy with the care their child received but there is scope for better parent and (where appropriate) child engagement in decision-making. There was an expressed need for written information about X(T) to reinforce what was given verbally in consultations and to share with other family members. Access could be via the hospital website, along with videos or blogs from parents and children who have undergone the various management options. A method of assisting clinicians to explain the treatment options, together with the uncertainties, in a clear and concise way could be of particular benefit to orthoptists who have the most regular contact with parents and children, and are more likely to suggest conservative treatments such as occlusion and minus lenses.

Project description:BackgroundThe clinical management of intermittent exotropia has been discussed extensively in the literature, yet there remains a lack of clarity regarding indications for intervention, the most effective form of treatment and whether or not there is an optimal time in the evolution of the disease at which any treatment should be carried out.ObjectivesThe objective of this review was to analyse the effects of various surgical and non-surgical treatments in randomised trials of participants with intermittent exotropia, and to report intervention criteria and determine the significance of factors such as age with respect to outcome.Search methodsWe searched the Cochrane Central Register of Controlled Trials (CENTRAL) (which contains the Cochrane Eyes and Vision Group Trials Register) (The Cochrane Library, Issue 4, 2012), MEDLINE (January 1966 to May 2012), EMBASE (January 1980 to May 2012), Latin American and Caribbean Literature on Health Sciences (LILACS) (January 1982 to May 2012), the metaRegister of Controlled Trials (mRCT) (www.controlled-trials.com), ClinicalTrials.gov (www.clinicaltrials.gov) and the WHO International Clinical Trials Registry Platform (ICTRP) (www.who.int/ictrp/search/en). We did not use any date or language restrictions in the electronic searches for trials. We last searched the electronic databases on 4 May 2012. We are no longer searching the UK Clinical Trials Gateway (UKCTG) for this review. We manually searched the British Orthoptic Journal up to 2002, and the proceedings of the European Strabismological Association (ESA), International Strabismological Association (ISA) and American Academy of Paediatric Ophthalmology and Strabismus meeting (AAPOS) up to 2001. We contacted researchers who are active in the field for information about further published or unpublished studies.Selection criteriaWe included randomised controlled trials of any surgical or non-surgical treatment for intermittent exotropia.Data collection and analysisEach review author independently assessed study abstracts identified from the electronic and manual searches. Author analysis was then compared and full papers for appropriate studies were obtained.Main resultsWe found one randomised trial that was eligible for inclusion. This trial showed that unilateral surgery was more effective than bilateral surgery for correcting the basic type of intermittent exotropia.Authors' conclusionsThe available literature consists mainly of retrospective case reviews, which are difficult to reliably interpret and analyse. The one randomised trial included found unilateral surgery more effective than bilateral surgery for basic intermittent exotropia. However, across all identified studies, measures of severity and thus criteria for intervention are poorly validated, and there appear to be no reliable natural history data. There is therefore a pressing need for improved measures of severity, a better understanding of the natural history and carefully planned clinical trials of treatment to improve the evidence base for the management of this condition.

Dataset Information

Comparison of quality-of-life instruments in childhood intermittent exotropia.

Publications

Comparison of quality-of-life instruments in childhood intermittent exotropia.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets