Original Research

Knowledge and practices of sickle cell disease among healthcare providers in Kinshasa, Democratic Republic of the Congo

Ange-Christian M. Ngonde, Jean-Pierre L. Fina, Edu Burgueno, Phillippe N. Lukanu

Received: 24 Apr. 2023; Accepted: 18 Dec. 2023; Published: 15 Feb. 2024

Copyright: © 2024. The Author(s). Licensee: AOSIS.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Background: In Kinshasa, Democratic Republic of Congo, there is a low evocation of the diagnosis of sickle cell disease (SCD) by first-level healthcare providers (HCPs), most likely because of poor knowledge of the disease.

Aim: To assess the levels of knowledge and practices of SCD and to identify determinants of the practices among primary HCPs.

Setting: Healthcare facilities in Selembao health zone in Kinshasa, Democratic Republic of the Congo.

Methods: A cross-sectional study of HCPs randomly selected through a two-stage sampling design. Data were collected using a pre-tested interviewer-administered questionnaire. Univariate and bivariate analysis were done to describe the levels of knowledge and practices of SCD. Factors associated with better practices on SCD were determined using multiple linear regression. The threshold for statistical significance was p ˂ 0.05.

Results: A total of 318 HCPs, which included 80 physicians and 238 nurses, participated in the study. The participants showed different scores on the components of the knowledge. All the participants showed poor practices on SCD. Multiple linear regression retained overall knowledge of SCD as a significant predictor of better practice for physicians. Knowledge of SCD and duration of work experience were significant predictors of better practices among nurses.

Conclusion: The practices of healthcare providers on SCD were far from optimal. These practices were significantly associated with knowledge and experience of healthcare providers.

Contribution: This study highlighted the need for continuing professional education to enhance the management of SCD in the setting.

Keywords: sickle cell disease; healthcare providers; knowledge; practices; primary health care.

Introduction

Sickle cell disease (SCD) is a common genetic disease, the sickle cell trait variant affecting about 300 million people worldwide, with one-third of the cases in sub-Saharan Africa, while the prevalence rates in the United States is 9% among African American people and 0.2% among Caucasian people.¹ In some areas of sub-Saharan Africa, up to 2% of all children are born with the condition. In broad terms, the prevalence of the sickle-cell trait (healthy carriers who have inherited the mutant gene from only one parent) ranges between 10% and 40% across equatorial Africa and decreases to between 1% and 2% on the north African coast and <1% in Southern Africa.² The disease usually presents between the ages of 6 and 18 months with homozygous carriers of the sickle cell gene having a shortened life expectancy because of multiple complications. The survival of SCD patients depends on the quality of the healthcare systems.² In high-income countries, the median survival of SCD patients is more than 60 years, and childhood mortality is now close to that in the general population. In the lower-income countries of Africa with poor healthcare systems, the under-five mortality of SCD can be as high as 90%.^3,4

In 2010, the World Health Organization (WHO) recommended a strategy of interventions centred on primary health care and valuing the improvement of healthcare staff skills in the comprehensive management of SCD.⁵ Staff training is one of the cornerstones of the fight against SCD. Activities for management of patients with sickle-cell disease should be based at the primary health care level, with emphasis on programmes that use simple, affordable technology and reach a large proportion of the community, and the personnel involved in medical care will most likely be primary healthcare practitioners with task-oriented basic training in sickle-cell disease.²

This study was done in the Democratic Republic of the Congo (DRC), a country with a sickle cell trait AS prevalence of 20% – 30% and a birth rate of 2% of homozygotes.⁶ The state of SCD control is similar to that in Nigeria.⁷ In Kinshasa, a review of data from Makala Referral Hospital, located in Selembao health zone, from 2009 to 2013, noted that sickle cell anaemia was not mentioned in any of the referral notes for children with polytransfusion.⁸ However, given the different causes of anaemia in children and its prevalence in the DRC, one would expect SCD to be suspected in all polytransfused children.^9,10 The study hypothesised that the lack of suspicion of SCD reflected a lack of knowledge of the disease.

Studies carried out in East and West Africa have revealed a low level of knowledge of the disease among the general population, medical students and some healthcare providers (HCPs).^11,12,13,14 There are also deficits in various organisational aspects of the control, screening, management and treatment of sickle-cell anaemia, involving several HCPs.^15,16

The Democratic Republic of the Congo in accordance with the recommendation of the WHO, being a country with a high prevalence of SCD, has set up a national programme to fight against SCD. The vision of this programme is to guarantee access to prevention and treatment services for SCD.^5,17 No studies on the level of knowledge and practice of HCPs about SCD have been done in DRC. The lack of knowledge and practices would delay the interventions of the HCPs, and consequently the mortality linked to this disease in children under five would still be high. This study aimed to assess the level of knowledge and practices of SCD and to identify determinants of better practice among primary HCPs in Selembao health zone, Kinshasa, DRC.

Research methods and design

Study design

This was a cross-sectional study among HCPs in Selembao health Zone, in Kinshasa, DRC.

Study setting

Selembao health zone is one of 35 health zones in the provincial health division of the city-province of Kinshasa in the DRC.⁸ Selembao health zone covers a population of 478 094 inhabitants in 18 health areas. A health area is a delimited geographical entity, composed of a group of villages in rural areas of villages in rural areas and/or streets in urban areas, established according to socio-demographic affinities, with an average population size of 10 000. The average population served is 10 000, depending on the area (rural or urban).⁸

Each health area is covered by a referral health centre. The zone includes a referral hospital, 18 referral health centres and 140 health centres. The health zone is managed by a management team coordinated by the head of the health zone. The health centres are mainly managed by the nurses while the physicians are working in the referral hospital.

Study population

The authors recruited HCPs working in the health centres of Selembao health zone. There are three categories of nurses according to their educational level – A2: high school level nurses (4 years in secondary school), A1: graduate level nurses (3 years in college) and A0: university level (2 years post college).

Sampling size estimation

All the physicians working in the health centres were included in the study. For nurses, the minimum size was calculated using OpenEpi software.¹⁸ Considering the total number of nurses in the health centres (790), an estimated frequency of knowledge about diagnosis and management of 31%,¹⁹ at a 95% confidence interval and the design effect of 1 (simple random sample); the minimum sample size was 233. Nurses were selected by simple random sampling at the facility level, with each facility required to give at least two nurses. A total of 80 physicians and 790 nurses were identified in the health centres of the zone.

Inclusion and exclusion criteria

All HCPs (physicians and nurses) performing consultations in the health centres were eligible for the study. Physicians and nurses specifically assigned to administration services were excluded.

Sampling procedure

The sampling process was different for physicians and nurses. All the physicians working in the health centres were invited to participate in the study. For the nurses, a two-stage sampling procedure was used. At the first stage, all the health centres of the health zone have been listed and assigned numbers. Then, a simple random sampling using a random number generator was performed. A total of 112 out of 158 facilities were selected. At the second stage, for the selection of HCPs, the nurses were selected also using simple random sampling. All the nurses performing consultations in the selected facilities have been listed and assigned numbers. A random number generator was used to identify the individuals to include in the study.

Data collection

Data were collected using a questionnaire adapted from a study by Adewoyin et al.¹² The tool used in the current study had 92 items, divided into five sections: socio-demographic data of the HCPs (3 items), knowledge related to epidemiological data on SCD (9 items), knowledge related to clinical manifestations of SCD (15 items), knowledge related to SCD diagnosis and management (20 items) and practice of SCD diagnosis, crisis management and outpatient follow-up in a health centre (45 items). The data was collected from 15 December 2017 to March 2018.

Data analysis

After the survey, the data were entered into an Excel file and exported into SPSS v. 20 software for analysis. For each item, the participant was given a score of 1 for a correct answer and 0 for a wrong answer. The total number of correct answers obtained was divided by the total number of items per section to determine the percentage.

Categorisation of the level of knowledge considered the percentage of the total points obtained and the profession for physicians: high level (˃75%), average level (50% – 75%) and low level (˂50%); for nurses: high level (˃65%), average level (50% – 65%) and low level (<50%). For the practice, the authors used the same thresholds and categorised it as better, good and poor practice. The authors determined absolute and relative frequencies of categorical variables, means and standard deviation for continuous normal variables or medians and interquartile range for non-normal variables. Multiple linear regression was performed, separately for nurses and physicians, to identify predictors of better practices. The level of statistical significance is p < 0.05.

Ethical considerations

The study was conducted with the approval of the Ethics and Research Committee of the Protestant University of Congo (Ref N°: CEUPC 0043). Permission to carry out the study was obtained from the Provincial Health District of the city or province of Kinshasa and then approved by the Head of Selembao HZ. Written informed consent was obtained by signature of each participant after explaining the purpose and objectives of the study. Each participant was free to withdraw from the study at any stage without any negative consequences to his or her work. The participants’ responses were analysed as pooled data, and anonymity of the HCPs in the study and confidentiality of their data were always guaranteed.

Results

A total of 318 HCPs, which included 80 (25.2%) physicians and 238 (74.8%) nurses, took part in the study. Nurses were divided into 118 (49.6%) with high school level (A2), 110 (46.2%) with graduate level (A1) and 10 (4.2%) university level (A0).

Table 1 summarises the socio-demographic characteristics of participants. The mean age of the HCPs, all categories combined, was 37.8 (±9.9) years, with almost half of the HCPs (43.4%) in the 30–39 age group. Males predominated (65.1%) and most of them (31.8%) had more than 10 years of work experience.

Physicians had an average level of knowledge about the epidemiology of SCD (65.8%); among nurses, those with a university’s degree (60.0%) and a graduate degree (59.6%) had an average level of knowledge about epidemiology (Table 2).

All the HCPs showed a high level of knowledge of the clinical manifestations of SCD: 85.7%, 79.3%, 72.8% and 70.1% for physicians, university level nurses, graduate degree nurses and high school level nurses, respectively (Table 3).

The proportion of high school and graduate-level nurses with an average level of knowledge about the diagnosis, and management of SCD was 52.8% and 55.9%, respectively (Table 4).

Table 5 details the practices of the healthcare provides on SCD: use of screening tests, description of symptoms or signs allowing to evoke the diagnosis of SCD, the performance of diagnostic tests and the management. Only physicians had good practices on SCD (50.1%); all nurses regardless of educational level had low practices with 42.6%, 44.2% and 40.7% for university level nurses, graduate level nurses and high school nurses, respectively (Table 5).

For physicians, multiple linear regression was used to test whether age, duration of occupation and knowledge of the disease predicted sickle cell practice. The overall regression was statistically significant (R² = [0.3360], F[7.62] = [4.48], p = [0.0004]). It was found that SCD knowledge predicted SCD practice (ß = [0.4592492], p = [0.000]).

For nurses, multiple linear regression was used to test whether age, title, duration of occupation and knowledge of the disease predicted sickle cell practice. The overall regression was statistically significant (R² = [0.3571], F[30.186] = [3.44], p = [0.0000]). Sickle cell disease knowledge and duration of work experience were found to predict SCD practice.

Discussion

The results of this study conducted to assess the knowledge and practices of primary HCPs on SCD showed an average level of knowledge about the diagnosis and management. Most participants were male, and a significant number had more than 10 years of work experience. The physicians showed good practice while all the nurses had a poor practice of SCD. Better practice on SCD practice was associated with knowledge among physicians and with knowledge and time in practice among nurses.

The predominance of male health care providers in the study sample highlights the existence of gender inequality within the medical workforce in the designated health zone of Kinshasa, DRC. Elsewhere, there is a tendency for female-predominant PHC organisations’ healthcare.²⁰ It was found that women providers have a more patient-centred communication and are more likely to meet quality performance measures.²¹ Addressing gender disparities could enhance provision and ensure optimal patient outcomes.

The HCPs show either average level (physicians, university and graduate level nurses) or poor level of knowledge on the epidemiology of SCD. It is essential for the HCPs to have a good knowledge on the epidemiology of sickle cell disease to implement effective preventive measures and tailor interventions to the needs of the population. The average level of knowledge indicates a potential gap and underscores the need for enhanced training and educational initiatives. Another area for training would be knowledge on clinical diagnosis and management where the health providers also showed average knowledge. And the situation is not limited to Kinshasa; a study in Kindu in the Eastern part of the DRC found poorer knowledge among HCPs with 48.8% and 26.6% having awareness of Emmel test and haemoglobin electrophoresis, respectively.²² A study in Tanzania showed that only 25.1% had good knowledge on SCD.²³ Encouragingly, participants demonstrated a high level of knowledge about the clinical manifestations of SCD. This is a positive indicator, as recognition of the signs and symptoms of SCD is essential for timely diagnosis and intervention.

A slightly more than half of the physicians reported having performed activities related to the diagnosis, management of crises and ambulatory follow-up of sickle cell patients. For the nurses, fewer than half the participants reported having performed these activities. Gomes and colleagues found a better practice than in the current study (65.5%), ranging from 40.4% to 87.23%.²² It is interesting to note that the authors considered physicians and nurses without distinction and addressed the knowledge of management only on children. It is noteworthy that the study by Gomes and colleagues assessed HCPs as a collective group, without distinguishing between physicians and nurses, and focused solely on the knowledge of managing paediatric populations. This may explain the observed higher level of practice, as the assessment of physicians may compensate for the potentially lower level of nurses, and the surveyed medical staff exclusively treated paediatric populations, which are likely to encounter a higher frequency of SCD cases. In contrast, the current study conducted separate assessments for nurses and physicians and included providers who were not exclusively dedicated to treating children.

This analysis using multivariate linear regression found that for physicians, there was a significant relationship between their knowledge of SCD and their practices in managing the condition. For nurses, both their knowledge of SCD and the duration of their work experience in the profession were significant predictors of their practice in managing the disease. This distinction between the predictors for physicians and nurses may be attributed to the compensatory effect of extensive professional experience for nurses, which may mitigate the impact of a lower level of academic knowledge. Essentially, nurses may enhance their understanding and management of SCD through accumulated field experience, thereby improving their practice in managing the condition.^25,26 Nevertheless, for this knowledge to be translated in practice, health centres must have the necessary equipment for diagnosing SCD. A multisite study in the DRC showed that 85% of the participants, from which the most were physicians, had no access to diagnostic tools of sickle disease.²⁶ The study in Tanzania also showed that regional-level hospitals lacked diagnostic tests and hydroxyurea.²³ The findings of the current study are corroborated by studies that have linked practices on sickle cell disease with either the knowledge of the disease¹⁶ or provider qualification.²⁴

Strengths and limitations

To the best of our knowledge, this is the first study in the sub-Saharan Africa to deal with the factors associated with better practice on SCD. The study used a detailed questionnaire to identify areas for possible improvement in terms of knowledge and practice.

However, some limitations should be considered. Firstly, the study was conducted in a specific health zone in Kinshasa, DRC, which might limit the generalisability of the findings to other regions or countries with different healthcare systems and demographics. Secondly, the reliance on self-reported data from HCPs may introduce response bias. Thirdly, because of its cross-sectional design, it is not possible to conclude on definitive relationship between factors identified for better practice on SCD.

Nonetheless, this study sheds light on the current state of knowledge and practices among HCPs in the health zone regarding SCD. Addressing the factors identified as associated with practice could enhance the quality of SCD care.

Conclusion

This study found that better practices on SCD were associated with either the level of knowledge on the disease (for all the HCPs) or with the duration of work experience for nurses. Raising the level of knowledge and improving the practices of the HCPs through continuing professional education might be beneficial in implementing opportunistic prevention of SCD in the setting. Taking into account the prevalence of SCD in the study setting, health centres must be equipped with basic equipment to ensure the diagnosis of the disease.

Acknowledgements

The authors acknowledge the Head of the Division of Health of the City-Province of Kinshasa, the Chief Medical Officer of the Selembao’s Health Zone, the teams of the Sickle Cell Disease Care Unit of the Makala General Hospital (HGR Makala), and the Medical Officer of the Sickle Cell Disease and Chronic Disease Management Unit (UPDMC).

The authors have declared that no competing interest exists.

A.-C.M.N. conceived the study and conducted the study as the principal investigator. J.-P.L.F. contributed to the design of the study, analysis of the data and the writing of the first draft of the article. E.B. supervised the research work, contributed to the operationalisation of the study and edited the article. P.N.L. contributed to the design of the study, analysis of the data and the writing of the article.

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Data supporting the findings of this research will be made available from the corresponding author P.N.L. upon reasonable request.

The views and opinions expressed in this article are those of the authors and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. The authors are responsible for this article’s results, findings, and content.

References