Design of the low vision quality-of-life questionnaire (LVQOL) and measuring the outcome of low-vision rehabilitation

PURPOSE: To design and validate a vision-specific quality-of-life assessment tool to be used in a clinical setting to evaluate low-vision rehabilitation strategy and management. METHODS: Previous vision-related questionnaires were assessed by low-vision rehabilitation professionals and patients for relevance and coverage. The 74 items selected were pretested to ensure correct interpretation. One hundred and fifty patients with low vision completed the chosen questions on four occasions to allow the selection of the most appropriate items. The vision-specific quality of life of patients with low vision was compared with that of 70 age-matched and gender-matched patients with normal vision and before and after low-vision rehabilitation in 278 patients. RESULTS: Items that were unreliable, internally inconsistent, redundant, or not relevant were excluded, resulting in the 25-item Low Vision Quality-of-Life Questionnaire (LVQOL). Completion of the LVQOL results in a summed score between 0 (a low quality of life) and 125 (a high quality of life). The LVQOL has a high internal consistency (α = 0.88) and good reliability (0.72). The average LVQOL score for a population with low vision (60.9 ± 25.1) was significantly lower than the average score of those with normal vision (100.3 ± 20.8). Rehabilitation improved the LVQOL score of those with low vision by an average of 6.8 ± 15.6 (17%). CONCLUSIONS: The LVQOL was shown to be an internally consistent, reliable, and fast method for measuring the vision-specific quality of life of the visually impaired in a clinical setting. It is able to quantify the quality of life of those with low vision and is useful in determining the effects of low-vision rehabilitation. Copyright (C) 2000 Elsevier Science Inc.

Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria:a cross sectional study

Background: Sickle cell disease impacts the physical, emotional and psychological aspects of life of the affected persons, often times exposing them to disease associated stigma from the society and alters the health related quality of life (HRQoL). This study compared the HRQoL of adolescents with sickle cell disease with their healthy peers, identified socio-demographic and clinical factors impacting HRQoL, and determined the extent and effects of SCD related stigma on quality of life. Procedure: We conducted a cross-sectional survey among 160 adolescents, 80 with SCD and 80 adolescents without SCD. Socio-demographic and clinical data were collected using a pre-tested questionnaire. HRQoL was investigated using the Short Form (SF-36v2) Health Survey. SCD perceived stigma was measured using an adaptation of a perceived stigma questionnaire. Results: Adolescents with SCD have significantly worse HRQoL than their peers in all of the most important dimensions of HRQoL (physical functioning, physical roles limitation, emotional roles limitation, social functioning, bodily pain, vitality and general health perception) except mental health. Recent hospital admission and SCD related complication further lowered HRQoL scores. Over seventy percent of adolescents with SCD have moderate to high level of perception of stigmatisation. Hospitalisation, SCD complication, SCD stigma were inversely, and significantly associated with HRQoL. Conclusions: Adolescents living with SCD in Nigeria have lower health related quality of life compared to their healthy peers. They also experience stigma that impacts their HRQoL. Complications of SCD and hospital admissions contribute significantly to this impairment. Pediatr Blood Cancer 2015;62:1245-1251.