Health related quality of life of people with oculocutaneous albinism in Jinja, Uganda. A cross sectional study

Abstract

Background The mixed understanding of albinism over the years and across civilizations globally has generated behaviours, attitudes and practices that have influenced the lives of people living with oculocutaneous albinism (PWA). If in some regions, they have been venerated, in the majority of regions, especially in Africa, the attitudes, behaviours and practices have negatively influenced the lives of people living with oculocutaneous albinism. Despite the fact that several attitudes, beliefs and behaviours capable to influence the quality of life of people with oculocutaneous albinism in the Busoga sub-region have been described, no information is available regarding the health related quality of life in the study area. The main objective of the present study was to determine the health related quality of life of people with oculocutaneous albinism in Jinja, Uganda. Methods A hospital based cross-sectional design was used to capture data from a study sample size of 384 adults living with oculocutaneous albinism in Jinja who were involved in completion of the Dermatology life quality index (DLQI) adult version. The results were determined by adding the scores of each question of DLQI together, yielding a maximum of 30 and a minimum of 0. The greater the score, the more worsening of one's quality of life was Results The analyses revealed that oculocutaneous albinism was found to have a very large effect on patient's life accounting for 48.7% of the participants. Only 5.7% of the participants reported that oculocutaneous albinism had no effect on their quality of life. The mean DLQI score was 14.55. Conclusions These findings show that oculocutaneous albinism affects negatively the quality of life of people with albinism in Jinja. Strategies targeting to solve different problems related to albinism must be taken to improve the quality of life of this vulnerable population in the study area.