Quality of life of adolescents living with sickle cell anaemia in Ondo State, Nigeria

Introduction This study assessed the level of knowledge and quality of life of adolescents living with sickle cell disease (SCD) and their quality of life. Methods This study utilized descriptive research design. The study was conducted in two secondary level hospitals with functional SCD clinic in Ondo State. One hundred and four (104) adolescents participated in the study. Their consents were sought and gained. Results Results showed that more males (63.5%) participated in the study. The mean age of the participants was 15.26±3.09 years. More than half (62.5%) of the participants that participated in the study had SCD crisis within six months. The mean SCD knowledge of participants in the study was 22.12±2.76, while 15.4% of the participants had good knowledge of SCD and Only 13(12.5%) have high quality of life. Also, the mean score of the participants on the quality of life scale was 39.50±6.47. Conclusion Knowledge of adolescents with SCD that participated in the study was relatively low and their quality of life moderate. Effort should therefore, geared towards improving their knowledge about SCD and providing supportive care that will improve their quality of life.


Introduction
Sickle Cell Anaemia (SCA) is an inherited blood disorder that affects the haemoglobin within the red blood cells [1]. SCA was first described by Herrick in 1910 and it is the commonest genetic disease in most countries in sub-Saharan Africa. Globally, about 100 million people, predominantly blacks are affected by the disease [2]. Over 300,000 babies are born with SCA worldwide mostly in low and middle income countries, although higher-income areas like Europe and America are not excluded; with majority of births in Africa thus making it a global health problem [3]. Generally, the prevalence of carriers ranges between 10% to 40% across equatorial Africa and 1% to 2% in Northern Africa, with less than 1% in Southern Africa [4]. In East African countries, such as Tanzania and Uganda, a wide variation of about 45% was reported; while in West African countries such as Ghana and Nigeria, the frequency of carriers' ranges from 15% to 30% [5]. In Nigeria, 24% of the populations are carriers of the mutant gene and the prevalence of sickle cell anaemia is about 20 per 1000 live births, which implies that in Nigeria alone, about 150,000 children are born annually with SCA [5]. World Health Organization report indicates that the sickle-cell trait is now known to be widespread, reaching its highest prevalence in parts of Africa as well as among people with origins in equatorial Africa, the Mediterranean basin and Saudi Arabia [1]. Sickle cell anaemia is a condition that has profound consequences on the quality of life (QoL) of sufferer and their family member [5]. Quality of life implies how an individual perceive his/her position in life in terms of culture and value system, and how it relates to set goals, expectations, standards and concerns. SCA affects persons across ages; it is a lifelong disorder that requires attention at each developmental stage. Adolescents with SCA often experience a wide range of complications including severe pain, chronic anaemia and jaundice, susceptibility to infection, pulmonary complications and acute chest syndrome, stroke risk, short stature and delayed puberty [6,7]. These complications tend to compromise adolescents' health status, quality of life, and emerging independence [8]. This may interfere with the important developmental process of adolescent transition to adulthood and adult SCA medical care [7]. A good knowledge of the disease and the disease process on the part of the adolescent is expected to reduce the impact of this disease on their quality of life and health status. This study is therefore, designed to evaluate the knowledge of SCA among adolescent living with SCA in Ondo State and their quality of life.

Methods
This study utilized descriptive research design; quantitative method of data collection was used to obtain data from the respondents. The study was conducted among adolescents living with SCA in Ondo State, Nigeria. Two health facilities with functional SCA clinic were purposively selected for the study. Ethical approval was sought and gained from the Research and Ethical Committee of Ondo State Hospitals Management Board. The two hospitals had a total of 150 adolescents who were duly registered as members of the SCD clinics.
However, only 104 adolescents were accessible to the researchers.

Results
Findings revealed that more males (63.5%) participated in the study, also majority of the respondents were Christians (81.0%), and Yoruba (91.3%). Respondents' ages were reported as follows 10-14 years (35.6%), 15-16 years (22.1%), while 17-19 years were 42.3%, this classification was done according to World Health Organization classification of adolescence. The mean age of the participants was observed to be 15.26±3.09 years (Table 1) and the demographic data of the participants in the study is reflective of the demographic of the clients in the clinic from the clinic attendance register. Sickle Cell Anaemia related demographic characteristics as shown in Table 2 revealed that 44.2% of the adolescents were in one support group or the other. Fifty-eight (58) adolescents said they have other siblings living with SCA. Also results showed that more than half (62.5%) of the participants that participated in the study had SCA crisis in the last six months while 46.2% said they were admitted into the hospital within the last six months as a result of SCA related crises. The mean SCA knowledge of participants in the study as shown in Table 3  However, the differences in the settings where our study and previous studies were carried out might have also accounted for this.
In an earlier study carried out among local government workers in Ile-  [18,19]. In this study, been teased by friends was found to be the most frequent issue raised by the participants affecting their quality of life. This is similar to feelings by the people as reported among patients with sickle cell disease. In a study by Acharya, Walsh and Friedman Ross (2009), they found out that some participants in their study said they are careful about who they reveal their SCA status to, because of fear of stigma [14]. Amr, Amin and Al-Omair in an attempt to evaluate health related quality of life among adolescents with sickle cell disease in Saudi Arabia found out that there is a significant relationship between gender and the adolescent quality of life [11]. Their study found out that female gender had worse quality of life compared to their male counterpart.
The present study established a weak negative correlation between gender and quality of life of adolescents that participated in the study.
This correlation, however, was observed not to be significant.

Conclusion
Sickle cell disease had been documented to reduce the quality of life of people living with it. This study established that knowledge of adolescents with SCD about SCD is low and their quality of life is moderate. Hence, there is need to improve the knowledge of people living with SCD which will ultimately improve their quality of life.

What is known about this topic
• SCA affects many people in the developing nations of the world like Nigeria; • SCA places high burden on family and caregivers.

Competing interests
The authors declare no competing interests.  Table 1: respondents' socio demographic characteristics Table 2: sickle cell disease related demographic characteristics Table 3: knowledge of respondents about sickle cell disease Table 4: categorization of the quality of life of the respondents  PubMed | Google Scholar