SC Neurologia, Salute Pubblica, Disabilità, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy.
SC Neurologia, Salute Pubblica, Disabilità, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy.
Res Dev Disabil. 2024 Aug;151:104772. doi: 10.1016/j.ridd.2024.104772. Epub 2024 Jun 12.
Vision has a key role in children's neuromotor, cognitive and social development. Children with visual impairment attain developmental milestones at later stages and are at higher risk of developing psychological disorders and social withdrawn.
We performed a scoping review to summarize the mostly used instruments assessing the impact of visual impairment on quality of life, functioning and participation of children and adolescents. In addition, the main findings of the included studies are discussed.
We searched for papers assessing quality of life, functioning and participation of children and adolescents with visual impairment from 0 to 18 years old conducted between 2000 and 2023.
In total, 69 studies met the inclusion criteria and were included in the review. Child self-report, caregivers-proxy and self-report questionnaires as well as interviews were used. The results showed that quality of life, functioning and participation are significantly reduced in children and adolescents with visual impairment, and that the impact depends on different factors (e.g., severity of the impairment, age).
Considering the significant impact of visual impairment on quality of life, functioning and participation on this population, it is fundamental to develop integrated and multi-dimensional assessment programs that evaluate the impact of visual impairment on those dimensions considering different contexts of life (e.g., family, school, leisure time). WHAT THIS PAPER ADDS?: The present review aims to give an overview of what is known about the impact of visual impairment on quality of life, functioning and participation of children and adolescents. We assumed a biopsychosocial perspective which, in line with the definition of health by the International Classification of Functioning, Disability and Health (WHO, 2001), considered how body functions and structures, functioning, participation and environmental factors dynamically interact to define the health, or the disease, status of a person at a certain moment of life. We reported the most used instruments for the assessment of quality of life, participation, and functioning, with a specific interest on Patient-Reported Outcome Measures and self-report measures. By reporting the different instruments used, we gave a broad overview about the available tools that can be used in clinical as well as in research field to assess quality of life, functioning and participation in this population. Additionally, the review of the existing literature allowed us to demonstrate that those dimensions are negatively impacted by visual impairment and thus they should be considered in the assessment programs. Specifically, there is the need to provide more integrated assessment programs that investigate the impact of visual impairment on children and adolescents' social and emotional wellbeing, everyday functioning and social relationship, considering their subjective experience together with the one of caregivers, teachers, health care professionals, and other relevant adults involved in their life. Additionally, it is essential to plan and implement multidimensional assessment programs that consider how all areas of life are differently impacted by visual impairment.
视觉在儿童的神经运动、认知和社会发展中起着关键作用。视力受损的儿童达到发展里程碑的阶段较晚，并且患心理障碍和社会退缩的风险更高。
我们进行了范围界定审查，以总结评估视觉障碍对儿童和青少年生活质量、功能和参与度影响的最常用工具。此外，还讨论了纳入研究的主要发现。
我们搜索了 2000 年至 2023 年期间针对 0 至 18 岁视力受损儿童和青少年生活质量、功能和参与度进行的研究。
共有 69 项研究符合纳入标准并被纳入综述。使用了儿童自我报告、照顾者-代理和自我报告问卷以及访谈。结果表明，视力受损的儿童和青少年的生活质量、功能和参与度显著降低，并且影响取决于不同的因素（例如，损伤的严重程度、年龄）。
鉴于视觉障碍对该人群生活质量、功能和参与度的重大影响，制定综合的多维评估计划至关重要，该计划应评估视觉障碍对不同生活环境（例如家庭、学校、休闲时间）维度的影响。
本综述旨在概述已知的视觉障碍对儿童和青少年生活质量、功能和参与度的影响。我们采用了生物心理社会视角，根据《国际功能、残疾和健康分类》（世界卫生组织，2001 年）对健康的定义，考虑了身体功能和结构、功能、参与和环境因素如何动态相互作用，以定义一个人在生命的某个时刻的健康或疾病状况。我们报告了用于评估生活质量、参与度和功能的最常用工具，特别关注患者报告的结果测量和自我报告测量。通过报告不同的仪器，我们广泛介绍了可用于临床和研究领域评估该人群生活质量、功能和参与度的现有工具。此外，对现有文献的回顾使我们能够证明这些维度受到视觉障碍的负面影响，因此在评估计划中应考虑这些维度。具体来说，需要提供更综合的评估计划，以调查视觉障碍对儿童和青少年社会和情感健康、日常功能和社会关系的影响，同时考虑他们与照顾者、教师、医疗保健专业人员和其他参与他们生活的相关成年人的主观体验。此外，必须规划和实施多维评估计划，以考虑到生活的所有领域如何受到视觉障碍的不同影响。
