Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences

Abstract

Quality of life (QOL) refers to people's ability to function in the ordinary tasks of living. It moves beyond direct manifestations of illness to the patient's personal morbidity. These assessments are an important aspect of chronic disease management. Sickle cell disease (SCD) is a chronic and potentially, quite a debilitating disease. The disease is severe and may result in significant morbidity, as well as a shortened life span. It is the most common genetic disorder seen in Jamaica and impacts on physical, psychological, social and occupational wellbeing. Jamaica is a developing country where support systems that exist for patients with SCD are sparse. Health related QOL has been shown to be poorer in people living in the rural areas as compared with urban populations. Utilization of comprehensive sickle cells disease services has also been shown to be lower for individuals with the disease living in rural areas than for those living in urban areas. As there are rural-urban differences in Jamaica's health services, it is hypothesized that there may be rural-urban differences in the experiences of the disease and the QOL of these patients in these subgroups. The SF 36 v2 (Short Form 36) questionnaire has been validated for use in the Jamaican SCD population. This validated questionnaire was interviewer-administered to 166 patients presenting to an urban clinic for routine health maintenance visits and to 90 patients presenting to the rural clinics for routine visits. Socio-demographic information was also collected on these two groups. Multiple linear regression analyses were performed to study predictors of QOL in these two sub-populations. The study received ethical approval from the University of the West Indies/University Hospital of the West Indies Ethics Committee. There were no significant differences in the measured socio-demographic characteristics of the rural and urban patients. Living in rural areas compared with urban areas (p <0.001), being employed (p 0.008), and having the heterozygous SC disease versus homozygous sickle cell (SS) disease (p 0.04) were all associated with improved QOL. The rural group also had better physical and mental health scores, as well as perceiving fewer limitations in their daily living activities as a result of their disease. The study shows that the rural SCD sample assessed their QOL as higher than the urban sample. It is possible that this surprising finding may be the result of lower levels of social support for urban SCD patients. However, further work could help elucidate why rural subgroups of people with this disease appear to enjoy much better QOL despite limited health care access.