Development and validation of a questionnaire to assess health-related quality of life of patients with visual impairment: self and proxy versions

• Grant number: 14/13114-7
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Effective date (Start): January 01, 2015
• Effective date (End): December 31, 2015
• Field of knowledge: Health Sciences - Medicine
• Principal Investigator: Paulo Schor
• Grantee: Lara Mendes Junqueira Bettarello
• Host Institution: Escola Paulista de Medicina (EPM). Universidade Federal de São Paulo (UNIFESP). Campus São Paulo. São Paulo , SP, Brazil

Abstract

Development and Validation of a questionnaire to assess health -related quality of life of patients with visual impairment : self and proxy versions. The vision disorders may be presented clinically in many forms , such as color/movement changes , decreased peripheral vision (as in glaucoma) , deficiencies in central vision (blurring) .The evaluation of quality of life in patients with visual disturbances like those cited above is a subjective analysis , subject to questioning its validity as long-term, as shown in studies in which patients show satisfaction after months of ophthalmologic intervention and dissatisfaction after nonintervention, although there is no structural modification of the optical system. This fact highlighted the need to create a specific tool (for central vision/blurring) that does not take into consideration only the subjective responses of the patient, but that add information obtained from the perception of the caregiver or family member (proxy) about the patient's vision, evaluating the quality of health-related individuals with visual impairments from the perception of patients and their respective caregivers. Objective: To develop and test the psychometric properties of this new special tool, from self and proxy versions to assess quality of life for the visually impaired. Methodology: The instrument will be based on the clinical experience of the researchers and a review of published studies on the topic addressed in the instrument. The final versions of the tool will be applied in patients and caregivers/family members to test the psychometric properties. Participants will be recruited at the clinical sites under the responsibility of the Department of Ophthalmology of Universidade Federal de São Paulo, namely outpatient units of the Cataract, Cornea, Refractive Surgery and Contact Lens. It will be applied a socio-demographic questionnarie in patients and their families or caregivers, and clinical data of patients will be collected by consulting their medical records. In addition to these data tools, to test the construct validity, it will be applied the 25-itens National Eye Institute Visual Function Questionnaire (NEI-VFQ-25) and the depression subscale of the instrument Hospital Anxiety and Depression Scale ( HADS ) .The data will be processed and analyzed using the Statistical Package for the Social Sciences (SPSS) version 18.0 . Descriptive statistics for all socio- demographic and clinical variables will be performed. Scalar variables will be analyzed considering the measures of central tendency and dispersion. Pearson correlation or Spearman tests will be used depending on the distribution observed in the values obtained by the instruments. These tests evaluate the correlation between quality of life measures from the new instrument and similar constructs (Sub - scales of the NEI - VFQ - 25 as the HADS - D).