Feasibility of the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) with a visual impairment: a pilot study.

BACKGROUND: Having a visual impairment affects quality of life, daily functioning and participation. To assess rehabilitation needs of visually impaired children and young adults, the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) were developed. The PAI-CY comprises four questionnaires for different age categories: 0-2 years, 3-6 years, 7-12 years and 13-17 years. This pilot study assesses the feasibility and acceptability of the PAI-CY and PAI-YA, and the relevance of the content of the questionnaires. METHODS: In addition to the regular admission procedure, the PAI-CY and PAI-YA were completed by 30 participants (six per questionnaire). For the PAI-CY, parents completed the questionnaire online prior to admission. From age 7 years onwards, children completed the questionnaire face-to-face with a rehabilitation professional during the admission procedure. Young adults completed the PAI-YA online. Subsequently, participants and professionals administered an evaluation form. RESULTS: Overall, 85% of the parents rated all aspects of the PAI-CY neutral to positive, whereas 100% of all children and young adults were neutral to positive on all aspects, except for the duration to complete. The main criticism of professionals was that they were unable to identify actual rehabilitation needs using the questionnaires. Minor adjustments were recommended for the content of questions. CONCLUSIONS: Parents, children and young adults were mostly satisfied with the questionnaires, however, professionals suggested some changes. The adaptations made should improve satisfaction with content, clarification of questions, and satisfaction with the questionnaires in compiling a rehabilitation plan. Although face and content validity has been optimized, a larger field study is taking place to further develop and evaluate the questionnaires.

Comprehending the impact of low vision on the lives of children and adolescents: a qualitative approach.

PURPOSE: To develop a comprehensive, conceptual model detailing the aspects of a child's life (<18 years) that are affected by low vision. METHODS: Three stakeholders were involved in the developmental process of the conceptual model: children and adolescents with a visual impairment (n = 40), parents of children with a visual impairment (n = 25) and professionals of multidisciplinary rehabilitation centres and specialised schools (n = 25). Qualitative methods including focus groups, online and face-to-face brainstorming sessions and concept mapping were used to investigate the impact of visual impairment on the lives of children and adolescents and to create the conceptual model. To aid interpretation of the large age range, four age-bands were formed. RESULTS: For each age-band (0-2, 3-6, 7-12 and 13-17 years), a total of 153, 200, 297 and 306 statements were generated by all stakeholders, respectively. The conceptual models show that low vision affects the sensorial development as well as the physical, psychological and social well-being of children and adolescents. In addition, identified external factors (i.e. education/employment and parental influence) can either facilitate or hinder participation. CONCLUSIONS: The developed model shows which life aspects of children are affected by low vision. The needs identified by children and adolescents correspond not entirely to the perspective of parents and low vision professionals. Future research should focus on developing and validating a new questionnaire based on the conceptual model. This will aid goal setting, rehabilitation referral and the accomplishment of developmental milestones and life transitions of children and adolescents with a visual impairment, ultimately improving their participation and quality of life.

Translation and cross-cultural adaptation of a Nepali version of the Dutch Participation and Activity Inventory for Children and Youth (PAI - CY) with visual impairment.

BACKGROUND: Visual impairment is an important cause of disability in children. There is a lack of information on rehabilitation needs and low vision support services for children with visual impairment in Nepal. This is a pilot study designed to translate, culturally adapt and pre-test the Dutch version of the Participation and Activity Inventory for Children and Youth (PAI-CY) with visual impairment aged 7-17 years to develop a Nepali version. Questionnaires (PAI-CY versions for 7-12 and 13-17 years) were translated using standardized methods and were culturally adapted by a panel of experts. They were pretested to evaluate comprehensibility and relevance among six children with visual impairment and blindness. Finally, participants completed a questionnaire evaluation form. RESULTS: The translation and cultural adaptation process resulted in the adaptation of nine items to make them suitable for Nepali culture. Most children had comprehensibility problems with some specific items because of vocabulary, sentence structure and the composition of items. Most of the children were satisfied with the questionnaires. CONCLUSION: The study resulted in the development of a Nepali version of the PAI-CY. We worked with a small group of content experts and a small but representative sample of children which allowed us to use rigorous translation procedures to address language and cultural differences. A population based study has been planned to investigate the psychometric properties of these questionnaires.

Prevalence, Pattern and Risk Factors of Retinal Diseases Among an Elderly Population in Nepal: The Bhaktapur Retina Study.

INTRODUCTION: Retinal diseases are an emerging cause of visual impairment in the developing world. The aim of this study was to explore the prevalence, pattern, and risk factors of retinal diseases in Nepal. METHODS: This is a population-based, cross-sectional study conducted from 2013 to 2015. The sample size was 2100 subjects age 60 years and above from 30 clusters of Bhaktapur district, Nepal. Detailed history, visual acuity, and anterior and posterior segment examinations were performed. Blood sugar and blood pressure were measured. RESULTS: Complete information was available for 1860 (88.57%) subjects. Mean age was 69.64±7.31 years, ranging from 60 to 95 years. The prevalence of any retinal disorder was 52.37% (95% confidence interval (CI): 50.07-54.66%). The prevalence of retinal disorders increased with ageing: 51.26% between 60 and 69 years and 53.05% among those age 80 years and above. Age-related macular degeneration (AMD) was the most common retinal disease (35.43%), followed by hypertensive retinopathy (4.35%), epiretinal membrane (ERM) (3.66%), branch retinal vein occlusion (BRVO) (2.90%), and diabetic retinopathy (DR) (2.15%). Other rare retinal disorders included myopic fundus (0.86%), chorioretinal scar (0.54%), retinal holes (0.32%), retinitis pigmentosa (0.32%), retinal detachment (0.16%), and coloboma (0.11%). In multivariate logistic regression analysis, those with prior cataract surgery (odds ratio (OR), 1.71; 95% CI: 1.32-2.22, p < 0.001) and systemic hypertension (OR, 1.21; 95% CI: 1.001-1.47, p = 0.049) had significantly increased retinal disorders. CONCLUSION: Prevalence of retinal disorder was 52.37% at age 60 years and above. AMD, hypertensive retinopathy, ERM, BRVO, and DR were the most common retinal disorders. Retinal disorders increased with ageing. Retinal disorders were found associated with hypertension and prior cataract surgery. Timely screening, control of blood sugar and high blood pressure, and regular eye check-ups could help to save vision from retinal diseases.

Quality of life and participation of young adults with a visual impairment aged 18-25 years: comparison with population norms.

PURPOSE: To compare health-related quality of life and participation of visually impaired young adults with normative groups, and to explore severity of vision loss and its association with participation and quality of life. METHODS: Young adults aged 18-25 years (n = 172) registered at two Dutch low vision rehabilitation organizations completed the Short Form Health Survey (SF-36), EuroQol-5 Dimensions (EQ-5D), Impact on Participation and Autonomy (IPA) and Low Vision Quality of Life questionnaire (LVQOL). EQ-5D and SF-36 scores were compared to age-specific norms. IPA scores were compared to norms of a population having three chronic diseases simultaneously. Linear regression was used to assess the association between severity of vision loss (mild VI, moderate VI and severe VI/blindness), and quality of life and participation. RESULTS: Participants scored significantly worse on almost all (sub)scales compared with relevant norms. Effect sizes for the EQ-5D and SF-36 (sub)scales were mostly small; moderate and large effect sizes were found for the IPA. Compared to young adults with mild VI, corrected models showed a significant association between having moderate VI and the physical component score of the SF-36, and between severe VI/blindness and the LVQOL. CONCLUSION: VI has a moderate impact on some aspects of quality of life and a large impact on participation of young adults when compared with relevant normative populations. Severity of vision loss is associated with worse physical functioning and vision-related quality of life. The results contribute to a better understanding of the impact of VI and might lead to improved low vision services.

Psychometric properties of a new intake questionnaire for visually impaired young adults: The Participation and Activity Inventory for Young Adults (PAI-YA).

BACKGROUND: To be able to identify and monitor personal needs and goals of visually impaired young adults before and during rehabilitation trajectories, the Participation and Activity for Young Adults (PAI-YA) was developed involving young adults (18-25 years) and professionals as stakeholders. The psychometric properties of this new patient-reported outcome measure were investigated in order to develop an improved version. METHODS: Young adults registered at two low vision rehabilitation centers in the Netherlands were invited to complete the 141-item PAI-YA (n = 186) in a test-retest design. To select the best items for the PAI-YA, response frequencies were assessed and a graded response model (GRM) was fitted. Item reduction was informed by response frequencies, insufficient item information, and participants' comments. Fit indices, item and person (theta) parameters were computed, after which known-group validity, concurrent validity, test-retest reliability and feasibility were studied. RESULTS: Response frequencies, violation of assumptions and item information informed the elimination of 81 items, resulting in a unidimensional PAI-YA showing satisfactory fit to the GRM. Known-group validity showed significant differences for visual impairment, financial situation, sex, educational situation and employment situation. Concurrent validity with (scales of) other questionnaires showed moderate to strong expected correlations. Test-retest reliability was satisfactory for all items (kappa 0.47-0.87), as was agreement (63.1-92.0%). Four items and one response option were added to increase feasibility. CONCLUSIONS: This study contributes to the development and assessment of psychometric properties of the PAI-YA, which resulted in an improved 64-item version. Evidence was provided for construct validity, known-group validity, concurrent validity and test-retest reliability. These results are an important step in the development of a feasible instrument to investigate and monitor rehabilitation needs of visually impaired young adults, to structure the intake procedure at low vision rehabilitation services and to evaluate the effectiveness of rehabilitation.

Impact of visual impairment on the lives of young adults in the Netherlands: a concept-mapping approach.

PURPOSE: While the impact of visual impairments on specific aspects of young adults' lives is well recognised, a systematic understanding of its impact on all life aspects is lacking. This study aims to provide an overview of life aspects affected by visual impairment in young adults (aged 18-25 years) using a concept-mapping approach. METHOD: Visually impaired young adults (n = 22) and rehabilitation professionals (n = 16) participated in online concept-mapping workshops (brainstorm procedure), to explore how having a visual impairment influences the lives of young adults. Statements were categorised based on similarity and importance. Using multidimensional scaling, concept maps were produced and interpreted. RESULTS: A total of 59 and 260 statements were generated by young adults and professionals, respectively, resulting in 99 individual statements after checking and deduplication. The combined concept map revealed 11 clusters: work, study, information and regulations, social skills, living independently, computer, social relationships, sport and activities, mobility, leisure time, and hobby. CONCLUSIONS: The concept maps provided useful insight into activities influenced by visual impairments in young adults, which can be used by rehabilitation centres to improve their services. This might help in goal setting, rehabilitation referral and successful transition to adult life, ultimately increasing participation and quality of life. Implications for rehabilitation Having a visual impairment affects various life-aspects related to participation, including activities related to work, study, social skills and relationships, activities of daily living, leisure time and mobility. Concept-mapping helped to identify the life aspects affected by low vision, and quantify these aspects in terms of importance according to young adults and low vision rehabilitation professionals. Low vision rehabilitation centres should focus on all life aspects found in this study when identifying the needs of young adults, as this might aid goal setting and rehabilitation referral, ultimately leading to more successful transitions, better participation and quality of life.