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Quality of life, functioning and participation of children and adolescents with visual impairment: A scoping review.
Lanza, Martina; Incagli, Francesca; Ceccato, Chiara; Reffo, Maria Eleonora; Mercuriali, Elena; Parmeggiani, Francesco; Pagliano, Emanuela; Saletti, Veronica; Leonardi, Matilde; Suppiej, Agnese; Dollfus, Hélène; LeBreton, David; Finger, Robert P; Leroy, Bart Peter; Zemaitiene, Reda; Nowomiejska, Katarzyna; Guastafierro, Erika.
Afiliación
  • Lanza M; SC Neurologia, Salute Pubblica, Disabilità, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy.
  • Incagli F; SC Neurologia, Salute Pubblica, Disabilità, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy. Electronic address: francesca.incagli@istituto-besta.it.
  • Ceccato C; Robert Hollman Foundation, Padova, Italy; Pediatric Unit, Department of Medical Sciences, University of Ferrara, Ferrara, Italy.
  • Reffo ME; Robert Hollman Foundation, Padova, Italy.
  • Mercuriali E; Robert Hollman Foundation, Padova, Italy.
  • Parmeggiani F; Department of Translational Medicine, University of Ferrara, Ferrara, Italy; ERN-EYE Network - Center for Retinitis Pigmentosa of Veneto Region, Camposampiero Hospital, Azienda ULSS 6 Euganea, Padova, Italy.
  • Pagliano E; Department of Pediatric Neurosciences Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy.
  • Saletti V; Department of Pediatric Neurosciences Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy.
  • Leonardi M; SC Neurologia, Salute Pubblica, Disabilità, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy.
  • Suppiej A; Robert Hollman Foundation, Padova, Italy; Pediatric Unit, Department of Medical Sciences, University of Ferrara, Ferrara, Italy; ERN-EYE Network - Center for Retinitis Pigmentosa of Veneto Region, Camposampiero Hospital, Azienda ULSS 6 Euganea, Padova, Italy.
  • Dollfus H; Centre de référence pour les affections rares ophtalmologiques CARGO, FSMR SENSGENE, ERN-EYE, Hôpitaux Universitaires de Strasbourg, Strasbourg, France; Laboratoire de Génétique Médicale, UMRS_1112, Institut de Génétique Médicale d'Alsace, Université de Strasbourg, Strasbourg, France.
  • LeBreton D; Institute for Advanced study (USIAS), University of Strasburg, France.
  • Finger RP; Department of Ophthalmology, Medical Faculty Mannheim, University of Heidelberg, Mannheim, Germany.
  • Leroy BP; Department of Ophthalmology and Center for Medical Genetics Ghent, Ghent University Hospital, Ghent, Belgium.
  • Zemaitiene R; Department of Ophthalmology, Lithuanian University of Health Sciences, Kaunas, Lithuania.
  • Nowomiejska K; Chair and Department of General and Pediatric Ophthalmology, Medical University of Lublin, Lublin, Poland.
  • Guastafierro E; SC Neurologia, Salute Pubblica, Disabilità, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy.
Res Dev Disabil ; 151: 104772, 2024 Aug.
Article en En | MEDLINE | ID: mdl-38870675
ABSTRACT

BACKGROUND:

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.

AIMS:

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. METHODS AND PROCEDURES 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. OUTCOMES AND

RESULTS:

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). CONCLUSIONS AND IMPLICATIONS 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.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Trastornos de la Visión Límite: Adolescent / Child / Child, preschool / Humans Idioma: En Revista: Res Dev Disabil Asunto de la revista: TRANSTORNOS MENTAIS Año: 2024 Tipo del documento: Article País de afiliación: Italia Pais de publicación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Trastornos de la Visión Límite: Adolescent / Child / Child, preschool / Humans Idioma: En Revista: Res Dev Disabil Asunto de la revista: TRANSTORNOS MENTAIS Año: 2024 Tipo del documento: Article País de afiliación: Italia Pais de publicación: Estados Unidos