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Development and initial validation of a screening tool for visual ability/performance of people with polyhandicap - 16/03/24

Doi : 10.1016/j.rehab.2023.101773 
Marie-Christine Rousseau a, g, , Georges Challe b, Soizic Charbonnier b, Marie-Thérèse Jacquier c, Maria Valkov a, Valérie Tourbier d, Sophie Lemaire d, Etienne Guilluy c, Nafissa Khaldi-Cherif e, Lionelle Nkam f, Karine Baumstarck g, Thierry Billette de Villemeur h, Philippe Aegerter i, j
a APHP, Hôpital San Salvadour, Service polyhandicap adultes, Hyères, France 
b APHP, Hôpital Pitié Salpêtrière, Service d'ophtalmologie, 83 Bd de l'Hôpital, 75013 Paris, France 
c Assistance Publique Hôpitaux de Paris, Hôpital de La Roche Guyon, Service de Polyhandicap Pédiatrique, France 
d Centre de soins Antoine de Saint Exupery, UGECAM Nord, Route de la Bassée 62880 Vendin le Vieil, France 
e Union Générale Caisse Assurance Maladie (UGECAM), Ile de France, France 
f APHP, Ambroise Paré Hospital, Clinical Research Unit, Boulogne-Billancourt, France 
g EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, 27 bd Jean Moulin, Marseille 13385, France 
h Service de Neuropédiatrie, Pathologie du développement, hôpital Trousseau-La Roche Guyon, France 
i GIRCI-IDF, Cellule Méthodologie, Paris, France 
j Université Paris-Saclay, UVSQ, Inserm, Équipe d'Épidémiologie respiratoire intégrative, U1018 CESP, 94807, Villejuif, France 

Corresponding author at: Hôpital San Salvadour (Assistance Publique Hôpitaux de Paris), BP 30 080, 83 407 Hyères Cedex France.Hôpital San Salvadour (Assistance Publique Hôpitaux de Paris)BP 30 080Hyères83 407Cedex France

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Highlights

VA-PLH is an easy-to-use tool for assessment of visual status of people with polyhandicap.
VA-PLH is a useful instrument for daily clinical practice and research.
VA-PLH scale reproducibility, responsiveness and acceptability are satisfactory.

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Abstract

Background

Visual impairments are common in people with polyhandicap although they are poorly assessed. However, evaluation of the visual abilities of these people is critical to determining treatment for impairments.

Objectives

To develop and validate an easy-to-use visual-behavioural scale for assessing the visual abilities of people with polyhandicap.

Methods

The development of the Visual Assessment for People with Polyhandicap (VA-PLH) involved 2 steps: i) construction of the scale and ii) field validation. Participant selection criteria were aged > 3 years, age at onset of cerebral lesion < 3 years, a combination of motor impairment and profound intellectual impairment associated with restricted mobility (Gross Motor Function Classification System levels [GMFCS] III, IV or V), and everyday life dependence (Functional Independency Measure [FIM] <55). Vision assessment by both an orthoptist and an ophthalmologist was the reference against which were analysed the items of the scale completed by local health care workers. Acceptability, validity, and reliability were analysed.

Results

Amongst the 232 participants included, 217 had a complete assessment, and 33% were < 18 years of age. Ocular abnormalities were reported in 83% of participants. Visual ability was altered or insufficient in 60% of participants. The final version of the VA-PLH included 3 items related to visual reaction (Area Under Curve Receiver Operating Characteristic = 0.83). Participants were considered at-risk if they had at ≥ 1 of 3 signs present (sensitivity 83% and specificity 73%). The scale's reliability was satisfactory

Conclusion

The VA-PLH scale provides an easy-to-use, reliable and valid measure of visual status for people with polyhandicap and may be used both in clinical practice and clinical research. In addition, this study provides an overview of the diversity of visual impairments in a large population of people with polyhandicap, showing that most experience visual challenges.

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Keywords : Polyhandicap, Visual evaluation, Screening tool, Visual troubles, Profound Intellectual and multiple disabilities

Abbreviations : AIC, AUC, CART, CVI, EFA, FIM, GMFCS, ICF, ICF-CY, KMO, LR, MAP, MD, MDS, NR, PABAK, PIMD, PLH, ROC, VSS, WHO


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 Clinicaltrials.gov: NCT03040609, February 2, 2017.


© 2023  Elsevier Masson SAS. Tutti i diritti riservati.
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