Development of a Visio-behavioral Scale to Evaluate Visual Abilities of Patients With Profound Multiple Intellectual Disabilities (PLH-Vision)

NCT ID: NCT03040609

Last Updated: 2021-09-23

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

232 participants

Study Classification

OBSERVATIONAL

Study Start Date

2017-07-20

Study Completion Date

2021-04-13

Brief Summary

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The main objective of this study is to develop and validate a visio-behavioral scale of visual abilities for subjects with profound multiple intellectual disabilities.

The secondary objectives of the study are:

* to validate the structure of the scale.
* to evaluate the reproducibility of scale with the intra- and inter-examiners, and the influence of the different professions of examiners.
* to evaluate the feasibility of visio-behavioral scale.
* to evaluate the sensitivity to change.
* to study the uniformity of use of the scale depending on the type of patients (age, disability level, pathology).
* to study the prevalence of the visual disorder in profound multiple intellectual disabilities subjects.

Detailed Description

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This study includes 3 phases:

* Elaboration of a list of behavioral items by a group of multi-disciplinary expertise (physicians, nurses, caregivers, ophthalmologies, orthoptists) based on their clinical experiences.
* Development of the scale based on the sample obtained by a prospective multicenter research trial.
* Validation of the sample obtained by a prospective transversal multicenter study.

This study will be performed in 5 centers in France. The enrollment of patients planned for 24 months targeting 310 patients. The duration of follow-up of the study for each patient will be varied according to the group of patients, il will be 1 day for group 1, 2 weeks for group 2, or 6 months for group 3.

Conditions

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Profound Multiple Intellectual Disabilities

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Group 1

The duration of follow-up of group 1 in the study is 1 day.

Visual-behavioral Scale at day 1

Intervention Type BEHAVIORAL

To perform the classification with the scale by caregiver.

Test-retest at the end of 2 weeks

Intervention Type BEHAVIORAL

To perform the classification with the scale by orthoptist at the end of 2 weeks

Test at 6 months

Intervention Type BEHAVIORAL

To perform the classification with the scale by orthoptist at the end 6 months.

Group 2

The duration of follow-up of group 2 in the study is 2 weeks.

Test-retest at the end of 2 weeks

Intervention Type BEHAVIORAL

To perform the classification with the scale by orthoptist at the end of 2 weeks

Test at 6 months

Intervention Type BEHAVIORAL

To perform the classification with the scale by orthoptist at the end 6 months.

Group 3

The duration of follow-up of group 3 in the study is 6 months.

Test at 6 months

Intervention Type BEHAVIORAL

To perform the classification with the scale by orthoptist at the end 6 months.

Interventions

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Visual-behavioral Scale at day 1

To perform the classification with the scale by caregiver.

Intervention Type BEHAVIORAL

Test-retest at the end of 2 weeks

To perform the classification with the scale by orthoptist at the end of 2 weeks

Intervention Type BEHAVIORAL

Test at 6 months

To perform the classification with the scale by orthoptist at the end 6 months.

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* Causal brain injury occurred before the age of 3 years.
* Severe or deep mental retardation as defined by DSM IV.
* Motor impairment: para / tetraparesis, hemiparesis, ataxia, or extrapyramidal motor disorders.
* Score of Gross Motor Function Classification System \[Palisano 1997\] is III, IV or V.
* Score of Functional Independence Measure \< 55.
* Subject aged ≥3 years (because the visio-behavioral scale is not adapted for children younger than 3 years).
* Beneficiary of a social protection.
* Written consent signed by guardian or legal representative, or parents in case of a minor subject.

Exclusion Criteria

* Acute intercurrent pathology precluding examinations.
* Patient with hypersensitivity to tropicamide, atropine or benzalkonium chloride.
* Angle closure glaucoma suspect patient.
* Patient with severe hypertension.
* Short life expectancy.
Minimum Eligible Age

3 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Assistance Publique - Hôpitaux de Paris

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Marie-Christine ROUSSEAU, MD

Role: PRINCIPAL_INVESTIGATOR

AP-HP, Hôpital San Salvadour, 83407 Hyères

Soizic CHARBONNIER, Orthoptist

Role: STUDY_CHAIR

Cabinet du Lycée

Locations

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Hôpital San Salvadour

Hyères, Var, France

Site Status

Countries

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France

Other Identifiers

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RCB: 2016-A00278-43

Identifier Type: OTHER

Identifier Source: secondary_id

P140712

Identifier Type: -

Identifier Source: org_study_id

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