|Year : 2016 | Volume
| Issue : 2 | Page : 80-85
Health-related quality of life in sickle cell disease subjects in Benin City, Nigeria
Benedict Nwogoh1, Caroline E Ofovwe2, Caroline Edijana Omoti1
1 Department of Hematology, University of Benin Teaching Hospital, Benin City, Nigeria
2 Department of Mental Health, University of Benin, Benin City, Nigeria
|Date of Web Publication||13-Jan-2017|
Department of Haematology, University of Benin Teaching Hospital, PMB 1111, Benin City
Source of Support: None, Conflict of Interest: None
Background: Sickle cell disease (SCD) is a chronic disease associated with increased morbidity and mortality. Hemoglobinopathies are the most prevalent genetic disease globally, and SCD is estimated to affect 2–3% of Nigerians. The disease may adversely impact on the quality of life of sickle cell patients. This study aims to evaluate the health-related quality of life (HRQoL) of SCD subjects compared to normal controls living in Benin City, Nigeria. Methodology: The HRQoL of SCD subjects was evaluated using the Medical Outcome Study 36-item survey tool. The outcome was compared with those of a normal non-SCD population. Data were analyzed with Statistical Package for Social Sciences version 16 (Chicago, SPSS Inc.). P value was set at 0.05.Results: Sixty-one SCD subjects and 61 normal respondents (controls) participated in the study. The mean ages of the SCD group and controls were 26.7 ± 9.0 years and 23.70 ± 3.1 years, respectively. Fifty-nine (96.7%) of the SCD respondents were hemoglobin (Hb) SS and 2 (3.3%) were Hb SC. The physical function, limitations due to physical health, general health, and pain scores were significantly lower in the SCD population compared to the controls (P = 0.000, 0.000, 0.000, and 0.002, respectively. The social function and limitation due to the emotional problem do not differ significantly between both groups while the vitality (energy/fatigue) score and emotional well-being were higher in the SCD group, but they were not statistically significant (P = 0.066 and 0.127, respectively). Male gender, employment, clinic attendance, and family support impacted positively on the HRQoL of SCD subjects. Conclusion: The physical and general health functions of SCD subjects are significantly impaired by the disease. There is a need for clinicians in our region to review current management trends to include world best practices such as the universal use of hydroxyurea and stem cell transplantation to change the prevailing trend.
Keywords: Benin City, health‑related quality of life, Nigeria, sickle cell disease
|How to cite this article:|
Nwogoh B, Ofovwe CE, Omoti CE. Health-related quality of life in sickle cell disease subjects in Benin City, Nigeria. Afr J Med Health Sci 2016;15:80-5
|How to cite this URL:|
Nwogoh B, Ofovwe CE, Omoti CE. Health-related quality of life in sickle cell disease subjects in Benin City, Nigeria. Afr J Med Health Sci [serial online] 2016 [cited 2020 Jun 4];15:80-5. Available from: http://www.ajmhs.org/text.asp?2016/15/2/80/197965
| Introduction|| |
Sickle cell disease (SCD) is a hereditary disease of hemoglobin (Hb) due to the inheritance of an S gene on the b globin chain. The disorder is due to a mutation at position six of the b globin chain resulting in the substitution of glutamic acid by valine. Inheritance of the gene in a homozygous form or a compound heterozygous form with another abnormal Hb often results in clinical disease.
The disease is characterized by chronic debilitating complications often interrupted by the episodes of crises (acute complications) and periods of wellness (steady state). The disease is associated with increased morbidity and mortality and a significant reduction in life expectancy.
SCD is highly prevalent in Sub-Saharan Africa with Nigeria bearing the highest burden. Nigeria has a prevalence rate of 2–3% which brings the affected population estimate to be between 3.2 and 4.8 million persons with the national population estimate of 160 million., The prevalence of SCD is 2.39% in Benin City; thus, the disease burden is high in our population.
Traditional methods of measuring disease impact involve determining the morbidity and mortality related to the disease and its complication. The health-related quality of life (HRQoL) assessment provides a reasonable alternative to assess the impact of a disease process on the physical, social, and mental well-being of affected persons. It can also serve the purpose of evaluating the impact of the health interventions on SCD subjects.
The HRQoL of SCD has been widely studied in other populations but to the best of our knowledge, there is no such study in Benin City, Nigeria. The study aims to assess the impact of SCD on the mental, physical, and social well-being of affected persons in our environment using the Medical Outcome Study (MOS) 36-item questionnaire; to compare HRQoL scores of SCD subjects with those of normal control population and to correlate the demographical and health behavior of the SCD subjects with the MOS subscale scores.
| Methodology|| |
This was a descriptive study conducted in Benin City between January 2012 and December 2012. SCD subjects were recruited consecutively from two centers, namely, the Sickle Cell Centre Benin City and the Adult Haematology Consultant Outpatient Clinic of the University of Benin Teaching Hospital, Benin City, Nigeria. Medical Students of the University of Benin, Benin City who had knowledge of their Hb phenotype were recruited as controls.
Consenting participants were administered an MOS 36-item questionnaire., Details of their demographic, clinic attendance, and drug compliance were obtained alongside. Respondents with at least five clinic attendances per annum were said to be regular. The MOS questionnaire has eight subscales which include physical functions, role limitations due to physical health, role limitations due to emotional problems, vitality (energy/fatigue), emotional well-being, social functioning, pain, and general health. Subscales 1, 2, 4, and 7 assess physical health; subscales 3 and 5 assess emotional health, subscale 6 assesses social well-being while subscale 8 assesses general health. Each subscale is scored 0–100. The higher the score, the better the quality of life tested by the subscale.
The study was approved by the Ethics Committee of the University of Benin Teaching Hospital, Benin City as well as the management of the Sickle Cell Centre, Edo State.
The data were collated using Microsoft Excel and analyzed with the Statistical Package for Social Sciences Version 16.0. (Chicago, SPSS Inc.). Results were expressed as mean, standard deviations, and proportions as appropriate. The mean values of each of the subscales of the SCD subjects were compared to those of the control population using Student’s t-test. Similarly, subscale scores between male and female respondents were compared with a t-test. Linear regression analysis was used to correlate the MOS subscale scores with the respondents demographic parameters, clinic attendance, and drug compliance. P value was set at 0.05.
| Results|| |
A total of 122 subjects participated in the study including 61 SCD patients and 61 controls. The SCD respondents comprised 24 (39.3%) males and 37 (60.7%) females while the controls comprised 37 (60.7%) males and 24 (39.3%). The mean age of the SCD group was 26.7 ± 9.0 years and the controls 23.7 ± 3.1 years. Thirty (49.2%) of the SCD respondent attained tertiary education, 50 (82.0%) were singles while 21 (34.4%) were employed. Fifty-nine (96.7%) were Christians, 44 (72.1%) of the respondents had their medical care sponsored by family members.
Fifty-nine (96.7%) of the SCD respondents were Hb SS and 2 (3.3%) were Hb SC. Twenty-nine (47.5%) of the SCD respondents did attend clinic regularly, and 48 (78.7%) were compliant with their routine medications. Details of their demographics are shown in [Table 1].
As shown in [Table 2], the physical function, limitation due to physical health challenge, pain, and general health subscale scores were significantly lower in the SCD population compared to the control populace. Limitation due to emotional problem and social functioning did not differ significantly between both groups while the energy/fatigue score and emotional well-being were higher in the SCD group but it was not statistically significant.
|Table 2 Comparison of Medical Outcome Study subscale scores sickle cell disease respondents with those controls|
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Physical function, the role of limitations due to physical health challenge, and general health were lower in males with SCD although not statistically significant; energy/fatigue, emotional well-being, social function, and pain scores were higher in males, but only emotional well-being score was statistically significant (P = 0.011). There was no statistical difference in the role of limitation due to emotional problem scores between males and female respondents. Details are shown in [Table 3].
|Table 3 Comparison of mean±standard deviation subscale scores between male and female sickle cell disease respondents|
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Linear regression analysis outcome presented in [Table 4] indicates a significant negative correlation between gender and emotional well-being (r = −0.327; P = 0.011). Similarly, negative correlations were found between job status, pain and energy/fatigue scores, clinic attendance and limitations due to emotional problem, sponsorship, and energy/fatigue subscale. A positive correlation was observed between the level of education and general health, clinic attendance, energy/fatigue, and emotional well-being.
|Table 4 Linear regression analysis of Medical Outcome Study subscales with subject demographic parameters, clinic attendance, and drug compliance|
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| Discussion|| |
SCD has been widely researched on in Nigeria, but there is a paucity of studies on the impact of the disease on the mental, physical, and social well-being of the patients despite the high prevalence of SCD in Nigeria. In this study, we found that the physical function, limitations due to physical health challenge, pain, and general health scores were significantly lower in the SCD population compared to the control populace. It is obvious that the recurrent episodes of bone pains and chronic complications such as avascular necrosis, leg ulcers among others which characterize the disease may negatively impact on their physical, general health, and pain subscales.
We observed that the social and limitation due to emotional problems do not differ significantly when compared to the control populace. Surprisingly, the energy/fatigue score and emotional well-being were higher in the SCD group. This may be attributed to the network of psychological support from family members and healthcare workers. From observation, Africans, (including Nigerians) generally have a caring attitude being collectivist by orientation as opposed to an individualistic orientation. Hence, a number of the subjects were sponsored by family members.
Amr et al. in a related study on SCD subjects in Saudi Arabia reported a significantly lower physical function, general health and pain scores compared to non-SCD subjects. This is similar to our findings in the index study. On the contrary, they reported a lower emotional well-being and role of limitation due to physical health challenge in SCD subjects. The latter study included adolescent SCD population only with the age of the respondents ranging between 14 and 18 years. There may be variations in quality of life between adolescents and adults, especially in emotional subscales due to hormonal changes associated with this phase of transition.
McClish et al. in another related study on adolescent and adult SCD subjects reported significantly lower scores in all the subscales except emotional well-being which did not differ significantly between SCD subjects and general population in Virginia, USA. This slightly differs from our observation in this study. The SCD respondents in addition to having a higher score on the emotional well-being subscale scored higher in the energy/fatigue subscale. Patel and Pathan also noted poor HRQoL in Indian children, especially in the physical, psychosocial, and cognitive domains.
From the above, it is obvious that the impact of disease on the HRQoL of sickle cell patients differs slightly from one geographical location to another. The variation may be partly due to the heterogeneity of the severity of SCD; some haplotypes are associated with less severe disease. The support network available to the patients from family members and the government may also impact on their HRQoL. Surprisingly, vitality assessed by energy/fatigue subscale and emotional well-being were higher in our study subjects than in the general populace. The family network of support may explain this. It has been suggested that people with chronic diseases may report good psychological well-being as a result of increased social support, religiousness, lack of other stressors, or due to the presence of a “response shift” associated with coping and managing of their illness.
Gender may have an impact on HRQoL. We observed that physical function, role of limitations due to the emotional problem and general health were lower in male SCD, but they were not statistically significant; energy/fatigue, emotional well-being, social function and pain scores were higher in males, but only emotional well-being score was significant statistically. This is similar to the observations of Amr et al. in all the subscales but contrary to those of Asnani et al. who found no association between HRQoL and gender.
We also observed that Hb genotype and religious background did not affect the HRQoL of the study subjects. McClish et al. noted the lack of association between genotype and the subscales of HRQoL with exception of vitality. The later reported Hb genotype associated with severe disease to have better vitality. This is contrary to the observations of Asnani et al., who though found an association between HRQoL and genotype noted that genotypes known to manifest with less severe disease had better HRQoL.
Employment status had a negative correlation with pain scores and vitality. The employed had significantly higher general health score than the unemployed. This is similar to the observations of Asnani et al. who reported that employment positively impacts on the HRQoL. Educational level was found to correlate positvely with the general health of the SCD subjects. This is similar to the observations of Asnani et al. This is not a surprise because education in itself is empowering. It may thus be argued that education helps to increase the level of awareness of the condition. Invariably, it empowers affected persons to participate actively in prescribed routine health care programs with the attendant benefit of a better quality of life.
While the HRQoL may be used to assess the impact of care, its objectivity may depend on the health seeking behavior of the subjects. Because of the high cost of care in our environment coupled with the fact that the cost of care is borne either by patients alone or their family, subjects who are stable may miss their clinic appointments. Thus, it is not surprising that subjects with irregular clinic attendance had significantly better scores in vitality and emotional well-being subscales. However, those who have regular attendance had better scores on the role of limitations due to emotional problem subscale. This implies that the emotional impact of the disease did not adversely affect their activities. This observation may be attributed to the gains of motivations by their clinicians and probably other affected persons they discuss with at the clinics.
It was observed that compliance to routine medications does not significantly impact on their HRQoL. This is contrary to the observations of Al Jaouni et al., who reported that treatment adherence and early intervention improves HRQoL of SCD subjects. Routine medications in our setting include antimalaria prophylaxis, folic acid, and occasionally hydroxyurea. Hydroxyurea is the only drug that has been shown to significantly modify the disease process. Its restriction to patients with severe and complicated diseases by clinicians in our setting may account for the lack of association between drug compliance and HRQoL. This restrictions is due to apprehension by patients and their caregivers on possibile oncogenic potentials of the drug.
| Conclusion|| |
The physical and general health components of HRQoL of SCD subjects are impaired by the disease. However, our results indicate that vitality and emotional functions are not adversely affected. We presume this may be due the psychosocial support from family and well-wishers.
| Recommendation|| |
The need for a more comprehensive study cannot be overemphasized in view of the inherent weakness of hospital-based studies. In addition, there is a need for the government and other nongovernmental bodies to provide support particularly in the area of employment to reduce the scourge of the disease.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]