Amblyopia and quality of life: a systematic review.
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ABSTRACT:
SUBMITTER: Carlton J
PROVIDER: S-EPMC3078103 | biostudies-other | 2011 Apr
REPOSITORIES: biostudies-other
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Project description:The Adult Strabismus Quality of Life Questionnaire (AS-20) and the Amblyopia & Strabismus Questionnaire (A&SQ) both measure health-related quality of life in strabismus patients. We evaluated to what extent these instruments cover similar domains by identifying the underlying quality-of-life factors of the combined questionnaires.Participants were adults from a historic cohort with available orthoptic childhood data documenting strabismus and/or amblyopia. They had previously completed the A&SQ and were now asked to complete the AS-20. Factor analysis was performed on the correlation-matrix of the combined AS-20 and A&SQ data to identify common underlying factors. The identified factors were correlated with the clinical variables of angle of strabismus, degree of binocular vision, and visual acuity of the worse eye.One hundred ten patients completed both questionnaires (mean age, 44 years; range, 38-51 years). Six factors were found that together explained 78% of the total variance. The factor structure was dominated by the first four factors. One factor contained psychosocial and social-contact items, and another factor depth-perception items from both questionnaires. A third factor contained seven items-only from the AS-20-on eye strain, stress, and difficulties with reading and with concentrating. A fourth factor contained seven items-only from the A&SQ-on fear of losing the better eye and visual disorientation, specific for amblyopia. Current visual acuity of the worse eye correlated with depth-perception items and vision-related items, whereas current binocular vision correlated with psychosocial and social-contact items, in 93 patients.Factor analysis suggests that the AS-20 and A&SQ measure a similar psychosocial quality-of-life domain. However, functional problems like avoidance of reading, difficulty in concentrating, eye stress, reading problems, inability to enjoy hobbies, and need for frequent breaks when reading are represented only in the AS-20. During the development of the A&SQ, asthenopia items were considered insufficiently specific for strabismus and were excluded a priori. The patients who generated the items for the AS-20 had, in majority, adulthood-onset strabismus and diplopia and were, hence, more likely to develop such complaints than our adult patients with childhood-onset strabismus and/or amblyopia.
| S-EPMC5554281 | biostudies-other
Project description:IntroductionAmblyopia is a neurodevelopmental vision disorder, characterized by poor vision in one or both eyes. Given the lack of existing clinical outcome assessments (COA) considered fit-for-purpose for amblyopia clinical trials, this study developed new COAs to assess amblyopia symptoms and health-related quality of life (HRQoL) impacts in adult and pediatric amblyopia populations that conform with best practice standards and regulatory guidelines.MethodsFindings from a targeted qualitative literature review informed the development of three versions of the new Amblyopia Quality of Life Questionnaire (AmbQoL): a patient-reported outcome measure (PRO) for individuals aged 13 years and older, a PRO for children aged 9-12 years, and an observer-reported outcome measure (ObsRO) for caregivers of children aged 4-8 years. Qualitative interviews were conducted with the target populations, and with ophthalmologists experienced in treating amblyopia patients to evaluate the content validity for further development of the AmbQoL. A translatability assessment was conducted to ensure cultural appropriateness and usability across multiple languages. Feedback from Food and Drug Administration (FDA) was also sought on the instruments, and clinical experts provided input at key stages.ResultsInterviews were conducted with 112 patients/caregivers and ten ophthalmologists from the USA, France, and Germany. The instructions, items, and response options were well understood across all AmbQoL versions. Feedback from the patients, caregivers, ophthalmologists, the translatability assessment, the FDA, and the expert clinicians informed minor wording modifications to enhance clarity and translatability. Some items were removed due to low relevance. The study resulted in a 23-item adult/adolescent PRO, 24-item child PRO, and 12-item ObsRO, each employing a 7-day recall period.ConclusionEach AmbQoL version has documented support for its face and content validity for use in amblyopia populations aged ≥ 4 years. Further research is necessary to evaluate the psychometric measurement properties of the AmbQoL instruments to enable their use in amblyopia treatment trials.
| S-EPMC10011248 | biostudies-literature
Project description:INTRODUCTION: Tuberculosis remains a major public health problem worldwide. In recent years, increasing efforts have been dedicated to assessing the health-related quality of life experienced by people infected with tuberculosis. The objectives of this study were to better understand the impact of tuberculosis and its treatment on people's quality of life, and to review quality of life instruments used in current tuberculosis research. METHODS: A systematic literature search from 1981 to 2008 was performed through a number of electronic databases as well as a manual search. Eligible studies assessed multi-dimensional quality of life in people with tuberculosis disease or infection using standardized instruments. Results of the included studies were summarized qualitatively. RESULTS: Twelve original studies met our criteria for inclusion. A wide range of quality of life instruments were involved, and the Short-Form 36 was most commonly used. A validated tuberculosis-specific quality of life instrument was not located. The findings showed that tuberculosis had a substantial and encompassing impact on patients' quality of life. Overall, the anti-tuberculosis treatment had a positive effect of improving patients' quality of life; their physical health tended to recover more quickly than the mental well-being. However, after the patients successfully completed treatment and were microbiologically 'cured', their quality of life remained significantly worse than the general population. CONCLUSION: Tuberculosis has substantially adverse impacts on patients' quality of life, which persist after microbiological 'cure'. A variety of instruments were used to assess quality of life in tuberculosis and there has been no well-established tuberculosis-specific instrument, making it difficult to fully understand the impact of the illness.
| S-EPMC2651863 | biostudies-other
Project description:BackgroundMost studies analyzing the health-related quality of life (HRQOL) after bariatric treatment ceased at five years post-surgery or even earlier, and it is unclear whether the HRQOL benefit persists for a longer time. This paper reviews sparse evidence regarding HRQOL in patients who underwent bariatric surgery at least nine years prior.Materials and methodsA of PubMed, Scopus and Google Scholar between 2007-2021 was carried out for the studies investigating HRQOL as an outcome measure in patients after bariatric surgery of any type and having at least a 9-year follow-up. Inconsistent reporting of weight loss or postgraduate study results unrelated to QoL were not included in the study. The study used the PICO procedure.ResultsThe review of 18 identified publications demonstrated that bariatric treatment seems to provide a persistent benefit in terms of HRQOL, especially its physical component score. Due to psychological predispositions, some patients appear to be less likely to benefit from bariatric treatment, whether in terms of HRQOL or bodyweight reduction. Inconsistent and imprecise studies may limit the evidence included in a review.ConclusionsThe early identification of such patients and providing them with holistic care, including psychological intervention, would likely further improve the outcomes of bariatric treatment.
| S-EPMC9330722 | biostudies-literature
Project description:BackgroundA systematic literature review was conducted to (a) identify the most frequently used health-related quality of life (HRQOL) models and (b) critique those models.MethodsOnline search engines were queried using pre-determined inclusion and exclusion criteria. We reviewed titles, abstracts, and then full-text articles for their relevance to this review. Then the most commonly used models were identified, reviewed in tables, and critiqued using published criteria.ResultsOf 1,602 titles identified, 100 articles from 21 countries met the inclusion criteria. The most frequently used HRQOL models were: Wilson and Cleary (16%), Ferrans and colleagues (4%), or World Health Organization (WHO) (5%). Ferrans and colleagues' model was a revision of Wilson and Cleary's model and appeared to have the greatest potential to guide future HRQOL research and practice.ConclusionsRecommendations are for researchers to use one of the three common HRQOL models unless there are compelling and clearly delineated reasons for creating new models. Disease-specific models can be derived from one of the three commonly used HRQOL models. We recommend Ferrans and colleagues' model because they added individual and environmental characteristics to the popular Wilson and Cleary model to better explain HRQOL. Using a common HRQOL model across studies will promote a coherent body of evidence that will more quickly advance the science in the area of HRQOL.
| S-EPMC3548743 | biostudies-literature
Project description:ObjectiveTo explore the associations of general health-related quality of life (GHRQOL) with strabismus or amblyopia in preschool children.DesignPopulation-based study.ParticipantsSample of children aged 25 to 72 months in the Multi-ethnic Pediatric Eye Disease Study (MEPEDS).MethodsThe Pediatric Quality of Life Inventory (PedsQL), a measure of GHRQOL, was administered to the parents of the children.Main outcome measuresThe PedsQL consists of 4 subscales (physical, emotional, social, and school functioning) and 3 composite scores (physical summary, psychosocial summary, and total). Regression models were used to evaluate the associations of GHRQOL with strabismus (in children 25-72 months) or amblyopia (in children 30-72 months).ResultsOf the 4218 children aged ?25 months, 121 (2.9%) were diagnosed with strabismus. Significant differences were found in all 3 composite scores between children with and without strabismus, before and after controlling for gender, age, race, family income, systemic health conditions, and prior knowledge of strabismus diagnosis (P<0.05). These differences were present in esotropes, exotropes, children with intermittent strabismus, and children with constant strabismus. A total of 3318 children were aged ?30 months, and 71 children (2.1%) had amblyopia. There were no significant differences in any PedsQL scores between children with and without amblyopia, even after adjusting for gender, age, race, and family income (P>0.05).ConclusionsStrabismus was associated with significantly worse GHRQOL in preschool children. Although we did not find any detectable association between amblyopia and GHRQOL, further study using vision-specific instruments is required to explore the impact of both strabismus and amblyopia on pediatric quality of life.
| S-EPMC3017225 | biostudies-literature
Project description:BackgroundHuntington's disease (HD) is a genetic, neurodegenerative disease. Due to the progressive nature of HD and the absence of a cure, (health-related) quality of life ((HR)QoL) is an important topic. Several studies have investigated (HR)QoL in HD, yet a clear synthesis of the existing literature is lacking to date. We performed a systematic review on self-reported (HR)QoL, and factors and intervention effects associated with (HR)QoL in premanifest and manifest HD gene expansion carriers (pHDGECs and mHDGECs, respectively).MethodsPubMed, EMBASE, Web of Science, and PsycINFO were searched systematically from September 17th, 2021, up to August 11th, 2022. Methodological and conceptual quality of the included studies was assessed with two appraisal tools.Results30 out of 70 eligible articles were included. mHDGECs experienced lower (HR)QoL compared to pHDGECs and controls, whereas mixed findings were reported when compared to other neurological diseases. Several factors were associated with (HR)QoL that might contribute to lower (HR)QoL in mHDGECs, including depressive symptoms, physical and psychological symptoms, lower functional capacity, lower support, and unmet needs. Multidisciplinary rehabilitation programs and a respiratory muscle training were beneficial for (HR)QoL in mHDGECs.Discussion(HR)QoL is experienced differently across the course of the disease. Although (HR)QoL is key for understanding the impact of HD and the effect of symptomatic treatment, there is a need to improve the methodological and conceptual shortcomings that were found in most studies, especially regarding the conceptual clarity when reporting on QoL and HRQoL. Suggestions for strengthening these shortcomings are provided in this review.
| S-EPMC10129943 | biostudies-literature
Project description:ObjectivesTo identify the instruments that have been used to measure health-related quality of life (HRQOL) in gout and assess their clinimetric properties, determine the distribution of HRQOL in gout and identify factors associated with poor HRQOL.MethodsMedline, CINAHL, EMBASE and PsycINFO were searched from inception to October 2012. Search terms pertained to gout, health or functional status, clinimetric properties and HRQOL. Study data extraction and quality assessment were performed by two independent reviewers.ResultsFrom 474 identified studies, 22 met the inclusion criteria. Health Assessment Questionnaire Disability Index (HAQ-DI) and Short Form 36 (SF-36) were most frequently used and highest rated due to robust construct and concurrent validity, despite high floor and ceiling effects. The Gout Impact Scale had good content validity. Gout had a greater impact on physical HRQOL compared to other domains. Both gout-specific features (attack frequency and intensity, intercritical pain and number of joints involved) and comorbid disease were associated with poor HRQOL. Evidence for objective features such as tophi and serum uric acid was less robust. Limitations of existing studies include cross-sectional design, recruitment from specialist clinic settings and frequent use of generic instruments.ConclusionMost studies have used the generic HAQ-DI and SF-36. Gout-specific characteristics and comorbidities contribute to poor HRQOL. There is a need for a cohort study in primary care (where most patients with gout are treated) to determine which factors predict changes in HRQOL over time. This will enable those at risk of deterioration to be identified and better targeted for treatment.
| S-EPMC3798715 | biostudies-literature
Project description:BackgroundPrimary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?.MethodsWe systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists.ResultsWe identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes.ConclusionThe limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.
| S-EPMC7981996 | biostudies-literature
Project description:IntroductionAmblyopia is an important public health concern associated with functional vision loss and detrimental impact on the physical and mental well-being of children. The gold standard for diagnosis of amblyogenic conditions currently involves screening by orthoptists and/or ophthalmologists. The bloom of technology enables the use of home-based screening tools to detect these conditions at an early stage by the layperson in community, which could reduce the burden of screening in the community, especially during restrictions associated with the COVID-19 pandemic. Here, we propose a systematic review aiming to evaluate the accuracy and reliability of home-based screening tools compared with the existing gold standard.Methods and analysisWe aim to search for studies involving home-based screening tools for amblyopia among children aged under 18 years. Oxford Centre for Evidence-Based Medicine Level 4 evidence and above will be included, without language or time restrictions. The following platforms will be searched from inception to 31 August 2021: PubMed, Medline, The Cochrane Library, Embase, Web of Science Core Collection and Clinicaltrials.gov. Two independent reviewers will identify studies for inclusion based on a screening questionnaire. The search and screening will start on 14 August 2021 until 1 October 2021. We aim to complete our data analysis by 30 November 2021. Risk of bias will be assessed using the Quality Assessment of Diagnostic Accuracy Studies 2 (QUADAS-2) tool for diagnostic accuracy studies only. Our primary outcome measure is the diagnostic accuracy of home-based screening tools, while secondary outcome measures include validity, feasibility, reproducibility and cost-effectiveness, where available.Ethics and disseminationEthical approval is not necessary as no primary data will be collected. The findings will be disseminated through presentations at scientific meetings and peer-reviewed journal publication.Prospero registration numberCRD42021233511.
| S-EPMC8404433 | biostudies-literature