Quality of life in patients with oculocutaneous albinism

BACKGROUND

The social reality of the albino needs to be more studied in Brazil, as myths andsocial segregation regarding this illness are likely to be found in the country,with psychosocial and medical implications.

OBJECTIVE

As this subject has not been referenced in previous scientific articles in Brazil,this research intends to evaluate the quality of life of the albinos that treatedat our medical institution.

METHODS

The quality of life was evaluated through the WHOQOL-BREF. Furthermore, twoaspects of main relevance in the lives of the albinos were also objects ofresearch, low vision and skin cancer. The sample consisted of forty oculocutaneousalbinos and a control group of forty healthy individuals, matched by sex andage.

RESULTS

Among the participants, 57.7% were between 18 and 40 years old, 28.2% were between41 and 60, and 14.1% were over 60. 42.1% had skin cancer before the study, 18.4%had skin cancer during the study and 89.5% stated visual deficit. The resultsobtained in the questionnaires showed a statistically significant difference inthe physical domain, with P < 0.001.

CONCLUSION

Low vision combined with skin lesions and social stigma may contribute todisturbances in the quality of life of oculocutaneous albinos. The resultspresented in this study demonstrated the vulnerability of the affected individualsand the special care required by those patients, at the same time that the needfor further research is highlighted in order to better elucidate the aspectsrelated to albinism.