Quality of life assessment among individuals with sickle cell disease attending hematology clinic of a Tertiary Hospital in Northwest Nigeria

Background: Globally, sickle cell disease (SCD) is the most common inherited disorder, with Nigeria having the greatest burden of the disease. SCD was thought to be a disease of childhood because many died early in life from related complications. However, advances in SCD treatment have altered its course such that the majority of children are living into adulthood. Individuals with SCD suffer increased school absenteeism, poor school performance, increased hospital visits, and increased hospitalization, thus affecting their quality of life (QOL) compared to normal individuals. Subjects and Methods: We conducted a hospital-based, descriptive, cross-sectional study among 120 individuals with SCD attending hematology clinic in a tertiary hospital, selected using systematic sampling technique. Pretested, structured, interviewer-administered questionnaire adapted from RAND's Short Form-36 was used for the data collection. Completed questionnaires were coded, and data were entered into SPSS software version 23.0 for analysis. Univariate and bivariate analyses were conducted among variables. Associations between categorical variables were tested for significance using Chi-square test and Student's t-test. Statistical significance was said to be achieved where P < 0.05. Results: A total of 120 participants were studied with an age range of 10–45 years and a median age of 20 years. Majority (54.2%) of the participants were in the age group of 10–20 years. In addition, 13 (10.8%) perceived their general health status as poor, whereas 71 (59.2%) had the perception of falling sick easily, than the normal individuals. The Health-Related Quality of Life (HRQOL) scores for the eight domains are as follows: bodily pain (62.3 ± 24.3), physical functioning (56.7 ± 25.5), physical role limitation (32.1 ± 37.7), social activities (59.5 ± 27.4), general mental health (42.0 ± 39.7), emotional status (59.1 ± 14.1), vitality (52.9 ± 13.1), and general health perceptions (50.8 ± 21.1). Conclusion: We found that the QOL of individuals with SCD is generally poor in all the domains of HRQOL, especially in the areas of role limitations due to physical and emotional health. Therefore, in addition to measures taken to reduce SCD complications, other interventions should target improving their physical and emotional health. We also recommend improving HRQOL among all the other domains as a clinical end point.