First stage psychometric testing of a new instrument for adolescents with visual impairment: the Participation and Activity Inventory for Children and Youth (PAI-CY) 13-17 years.

BACKGROUND: To assess participation of children with visual impairment, the Participation and Activity Inventory for Children and Youth (PAI-CY) was recently developed. This study assessed some initial psychometric properties of the PAI-CY 13-17 years version, and investigated its feasibility. METHODS: Adolescents with visual impairment and their parents (n = 72 dyads) completed the self-report and proxy-report version of the 58-item PAI-CY, an evaluation form and several questionnaires measuring related constructs. Item deletion was informed by item responses, inter-item correlations, test-retest reliability, adolescent-parent agreement and participants' feedback. Known-group validity and concurrent validity with related questionnaires were investigated for the final item-set. RESULTS: Twelve items had > 20% missing values, whereas 39 items showed floor effects. Eight item pairs showed high inter-item correlations. Test-retest reliability was acceptable for most items (kappa ≥0.4). Evaluation forms showed that over 90% of respondents was neutral to very positive regarding several feasibility aspects such as administration time and comprehensiveness. Adolescent-parent agreement was mostly low. These results informed the deletion of three items. Known-group validity seemed adequate since PAI-CY scores were significantly worse for participants with comorbidity compared to those without. A trend towards worse scores for participants with more severe visual impairment was also observed. Correlations between the PAI-CY and related questionnaires confirmed concurrent validity. CONCLUSIONS: Initial psychometric properties of the PAI-CY 13-17 were acceptable, although more work is needed to assess other psychometric properties, such as the underlying construct. Following implementation in low vision care to assess participation needs, enabling larger samples, acceptability of the PAI-CY 13-17 to end-users should be carefully monitored, especially if alterations are made based on the current study.

Psychometric evaluation of the Participation and Activity Inventory for Children and Youth (PAI-CY) 0-2 years with visual impairment.

PURPOSE: To identify and monitor the developmental and participation needs of visually impaired (VI) children, the Participation and Activity Inventory for Children and Youth (PAI-CY) has recently been developed involving end-users as stakeholders. The aim was to investigate psychometric properties of the PAI-CY for children between 0 and 2 years. METHODS: Responses from 115 parents were included in item analyses, after which a combination of classical test theory and item response theory (IRT) was used. Internal consistency, known-group validity, and test-retest reliability at item and scale level were investigated. RESULTS: After deleting four items, the PAI-CY met IRT assumptions, i.e., unidimensionality, local independence, and monotonicity, and satisfactory model fit was obtained. Participants with more severe VI and comorbidity scored significantly worse than those with less severe VI and without comorbidity, supporting known-group validity. Satisfactory internal consistency and test-retest reliability were obtained (Cronbach's alpha 0.95, kappa 0.60-0.91, ICC 0.920). CONCLUSIONS: The PAI-CY 0-2 years has acceptable psychometric properties and can be used to systematically assess and monitor developmental and participation needs of very young children with VI from parents' perspectives in low vision practice and research. Confirmation of psychometric properties is necessary, possibly facilitating further item reduction, increased precision, and improved user-friendliness.

The association between visual impairment and fatigue: a systematic review and meta-analysis of observational studies.

PURPOSE: The aim was to compare fatigue levels between patients with visual impairment and controls with normal sight and to examine the association between fatigue and vision loss severity. METHODS: A systematic literature search was performed using databases of PubMed, Embase, PsycINFO and Cochrane to identify observational studies with outcomes related to fatigue (e.g. vitality subscale of the Short-Form 36, Fatigue Assessment Scale). A meta-analysis was performed using standardised mean differences (SMDs) and odds ratios (OR) to quantitatively summarise the association between visual impairment and fatigue. Sources of heterogeneity were explored by subgroup and sensitivity analyses. Study quality was assessed with the Newcastle-Ottawa scale. RESULTS: After reviewing 4477 studies, 22 studies with a total of 40 004 participants were included, of which 18 contributed to meta-analysis. Among these, eight were assessed as moderate quality studies and 10 as high quality studies. Pooled analysis involving 2500 patients and 8395 controls showed higher fatigue severity levels (S.M.D. = -0.36, 95% CI -0.50 to -0.22, 14 studies) among visually impaired patients compared to normally sighted controls. This effect size was small and persisted in sensitivity analyses that involved study quality, fatigue assessment tools and visual acuity data. Furthermore, pooled analysis of four studies including 2615 patients and 5438 controls showed a significant association between visual impairment and fatigue (OR = 2.61, 95% CI 1.69 to 4.04). Secondary meta-analysis of four studies showed no significant difference in fatigue severity (S.M.D. = 0.01, 95% CI -0.37 to 0.39) between patients with moderate visual impairment and patients with severe visual impairment or blindness. CONCLUSIONS: Current moderate to high quality evidence suggest that patients with visual impairment experience more severe fatigue symptoms than persons with normal sight. However, a limited number of available studies indicates that fatigue is not associated with severity of vision loss. Future studies are required to determine which factors and underlying mechanisms may explain the association between visual impairment and fatigue. Discussing fatigue at an early stage and developing intervention options for vision-related fatigue should be considered within the field of low vision rehabilitation.

Understanding fatigue in adults with visual impairment: A path analysis study of sociodemographic, psychological and health-related factors.

BACKGROUND: Fatigue is a disabling problem in patients with visual impairment, but its etiology is still poorly understood. Our objective was to identify the determinants of fatigue in adults with visual impairment compared to adults with normal sight. METHODS: Cross-sectional data on fatigue and sociodemographic, psychological and health-related factors was obtained with validated questionnaires. Structural equational modeling using hypothesized relationships and explorative analyses were used to identify (in)direct pathways contributing to fatigue in 247 adults with visual impairment. The model was then tested in a reference group of 151 adults with normal sight. RESULTS: The final model explained 64% of fatigue variance in participants with visual impairment and revealed the following factors to be directly associated with fatigue: depressive symptoms (ß = 0.723, p<0.001), perceived health (ß = -0.158, p = 0.004), accommodative coping (ß = 0.116, p = 0.030) and somatic comorbidity (ß = 0.311, p = 0.001). Self-efficacy demonstrated a beneficial indirect effect on fatigue (ß = -0.228, p<0.001) mediated by depression, accommodative coping and perceived health. Sleep disorder had an indirect effect on fatigue (ß = 0.656, p<0.001) mediated by depression and perceived health. After removal of sleep disorder, the model explained 58% of the fatigue variance in normally sighted adults but pathways involving accommodative coping and somatic comorbidity were not confirmed. CONCLUSIONS: These findings suggest that depression and perceived health are important mediating factors that contribute to fatigue in persons with visual impairment and normal sight. In contrast, somatic comorbidity, sleep disorders and accommodative coping seem to have a specific contribution to vision-related fatigue. These factors should be addressed in interventions to assist individuals with visual impairment in dealing with fatigue.

Psychometric evaluation of a new proxy-instrument to assess participation in children aged 3-6 years with visual impairment: PAI-CY 3-6.

PURPOSE: The Participation and Activity Inventory for Children and Youth 3-6 years (PAI-CY 3-6) was recently developed to assess the participation needs of children with visual impairment (VI) by means of parent-proxy report. This study reports on its psychometric properties. METHODS: Parents of children aged 3-6 years registered at two low vision rehabilitation centers in the Netherlands were invited to participate and completed the 52-item PAI-CY. Satisfaction with the PAI-CY 3-6 was determined using an evaluation form. Basic item analyses was conducted, after which an item response theory (IRT) model (i.e. the graded response model, GRM) was fitted. Deletion of items was informed by results of item analyses, fulfillment of IRT assumptions, differential item functioning, fit to the GRM and item information content. Face and content validity were considered; professionals from low vision rehabilitation centers were asked for their opinion in the item deletion process. After obtaining a satisfactory set of items, known-group validity, concurrent validity and test-retest reliability were also investigated. RESULTS: Data of 237 parents were included in the analyses. Various aspects of the PAI-CY 3-6 were perceived as neutral to positive by over 85% of the respondents. After removing 17 items, the remaining 35 items reflected satisfactory fit to the GRM. Known-group validity was supported, since participants with more severe VI and comorbidity scored significantly worse than those with less severe VI and without comorbidity after correcting for potential confounders. Test-retest reliability was adequate, and the PAI-CY showed to have good concurrent validity. Feedback from professionals motivated the maintenance of 3 of the 17 deleted items, although not included in the scoring. Furthermore, two new items were added, resulting in a 40-item instrument. CONCLUSIONS: The PAI-CY 3-6 has sound psychometric properties and can now be used to assess the participation needs of children aged 3-6 years with VI by means of proxy. Implementation in routine low vision rehabilitation care enables further optimization and investigation of its acceptability and feasibility.

Interventions to improve functioning, participation, and quality of life in children with visual impairment: a systematic review.

Visual impairment in childhood often has life-long implications. To aim for the highest levels of functioning, participation, and quality of life and to ensure children's well-being, children should be entitled to the most effective rehabilitation programs. We review evidence for the effectiveness of rehabilitation interventions for children with visual impairment to improve skills and behavior, thereby improving participation and quality of life as an ultimate goal. Of the 441 potentially relevant articles identified, 66 studies met our inclusion criteria (i.e., 28 randomized controlled trials, 18 nonrandomized controlled trials, and 20 before-after comparisons). The results suggest that sports camps, prescription and training in the use of low vision devices, and oral hygiene programs might be effective in improving functioning and elements of participation and quality of life in children with visual impairment. Other interventions showed mixed or negative results. The results should be interpreted with caution because of moderate to high risk of bias and suboptimal reporting. Heterogeneity of results and the use of over 50 different outcome measures prevented a meta-analysis. Future studies should focus on promising interventions for which effectiveness is still unclear (e.g., mobility, social skills), with adequately designed methodology.

Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study.

OBJECTIVES: Fatigue is an often mentioned symptom by patients with irreversible visual impairment. This study explored the patient perspective of fatigue in visually impaired adults with a focus on symptoms of fatigue, causes, consequences and coping strategies. SETTING: Two large Dutch low vision multidisciplinary rehabilitation organisations. PARTICIPANTS: 16 visually impaired adults with severe symptoms of fatigue selected by purposive sampling. METHODS: A qualitative study involving semistructured interviews. A total of four first-level codes were top-down predetermined in correspondence with the topics of the research question. Verbatim transcribed interviews were analysed with a combination of a deductive and inductive approach using open and axial coding. RESULTS: Participants often described the symptoms of fatigue as a mental, daily and physical experience. The most often mentioned causes of fatigue were a high cognitive load, the intensity and amount of activities, the high effort necessary to establish visual perception, difficulty with light intensity and negative cognitions. Fatigue had the greatest impact on the ability to carry out social roles and participation, emotional functioning and cognitive functioning. The most common coping strategies were relaxation, external support, socialising and physical exercise and the acceptance of fatigue. CONCLUSIONS: Our results indicate that low vision-related fatigue is mainly caused by population specific determinants that seem different from the fatigue experience described in studies with other patient populations. Fatigue may be central to the way patients react, adapt and compensate to the consequences of vision loss. These findings indicate a need for future research aimed at interventions specifically tailored to the unique aspects of fatigue related to vision loss.