Psychometric evaluation of a new proxy‐instrument to assess participation in children aged 3–6 years with visual impairment: <scp>PAI</scp>‐<scp>CY</scp> 3‐6

Koel

Invest. Ophthalmol. Vis. Sci.

et al. 2021

Purpose The purpose of this study was to investigate quality of life and participation in children aged 3 to 17 years with visual impairment (VI) compared to reference groups and between subgroups with increasing severity levels of VI. Methods Parents of children aged 3 to 17 years ( n = 500) and children aged 13 to 17 years ( n = 75) completed the Child and Adolescent Scale of Participation (CASP). Children aged 7 to 17 years ( n = 263) and their parents ( n = 255) completed the KIDSCREEN-27 questionnaire to assess quality of life. Scores were compared to age and/or gender-appropriate population-based samples. For the CASP, a comparison was also made with children with chronic conditions or disabilities. The association between severity of VI and quality of life or participation was analyzed with linear regression models. Results Children reported significantly worse on Physical Wellbeing and Social Support & Peers, but better on the School Environment KIDSCREEN-27 subscales compared to reference groups. Parents additionally reported worse on Autonomy & Parent Relation. Children's participation was significantly worse compared to a population-based sample, but significantly better compared to children with chronic conditions and disabilities. Having moderate or severe VI/blindness was significantly associated with worse participation, as reported by parents relative to those with no VI. Conclusions Quality of life of children with VI is affected especially regarding Physical Wellbeing and Social Support & Peers compared to a reference population, and their participation is considerably worse. Participation was more affected in children with more severe VI. These results contribute to the understanding of the impact of VI. Interventions targeting physical health, social skills, and participation are warranted.

Section: Methodsmentioning

confidence: 99%

“…Several vision-specific instruments for children with VI have been developed in recent years. [15][16][17] These instruments are valuable for assessing vision-related problems and are probably more sensitive to the specific problems these children have. However, in order to compare results to other populations, generic instruments are more useful.…”

mentioning

confidence: 99%

Quality of Life and Participation of Children With Visual Impairment: Comparison With Population Reference Scores

Koel

Invest. Ophthalmol. Vis. Sci.

et al. 2021

“…In the self- reliance domain “preparing a sandwich” was changed to “preparing bread and jam”, which is popular in Nepal and more easily available than “a sandwich”. From the group discussion with Dutch and Nepali researchers, the Dutch researchers who were the original developers of PAI-CY, mentioned that in the original validation study Dutch children stated missing various activities in the questionnaires [ 27 , 28 ]. These items were discussed for their relevance to the Nepali context.…”

Section: Resultsmentioning

confidence: 99%

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

Adhikari

et al. 2021

J Patient Rep Outcomes

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.

“…Therefore, the graded response model (GRM) was also applied to the data. The GRM is an example of a widely used two‐parameter model for polytomous items; its use is advocated by the PROMIS initiative 39,45,46 …”

Section: Methodsmentioning

confidence: 99%

Psychometric properties of the Dutch version Adult Strabismus‐20 Questionnaire (AS‐20)

Burggraaf

Ophthalmic Physiologic Optic

et al. 2021

Self Cite

Purpose Strabismus often has an impact on a patient's quality of life (QoL). The Adult Strabismus‐20 questionnaire (AS‐20) is an instrument developed to assess the strabismus‐specific QoL. The aim was to investigate several psychometric properties of the Dutch‐AS‐20 among adult patients with strabismus. Methods Patients with any type of strabismus completed the Dutch‐AS‐20, the EuroQol five‐dimensional questionnaire (EQ‐5D‐5L) and the Amblyopia and Strabismus Questionnaire (A&SQ) (N = 286). Psychometric properties were evaluated with the use of item response theory (IRT) analysis (graded response model) and by determining the internal consistency, test‐retest reliability after two weeks, targeting and measurement precision. Construct validity of the AS‐20 was tested against the EQ‐5D‐5L and the A&SQ. Results Principal component analysis indicated a psychosocial and function subscale. After collapsing underutilised response options for 10 items, subsequent fit analysis showed that the function subscale benefitted from removal of two items. Differential item functioning (DIF) was detected on four items for age and gender subgroups, but with minimal impact on the total score. Internal consistency (Cronbach's alpha 0.93 psychosocial and 0.87 function subscale) and test‐retest reliability (ICC 0.91 psychosocial and 0.88 function subscale) were sufficient. Targeting and measurement precision of both subscales was appropriate for patients with low to moderate levels of visual and psychosocial functioning but suboptimal for patients with high levels of visual and psychosocial functioning. Correlations were between 0.4 and 0.7 for (subscales of) the Dutch‐AS‐20 and the A&SQ or EQ‐5D‐5L, confirming expected construct validity. Conclusions The 18‐item Dutch‐AS‐20 has sound psychometric properties to assess the strabismus‐specific QoL among Dutch adult patients with low to moderate levels of visual and psychosocial functioning. Care must be taken when interpreting the results due to lower measurement precision at the higher end of both subscales. In future longitudinal studies, properties to assess treatment effects should be evaluated.