Health Literacy and Disease Knowledge in Adolescents and Young Adults with SCD in Benin

Abstract

Introduction: Disease knowledge and health literacy are important health competencies that individuals with chronic conditions like Sickle Cell Disease (SCD) need for self-management. This study aimed to: (I) describe and compare SCD knowledge and health literacy levels in adolescents and young adults (AYAs) with SCD in Benin; (II) examine associations between genotype, socio-demographic factors, health literacy, and SCD knowledge; and (III) examine the associations between patients SCD knowledge, health literacy, socio-demographic factors, and (a) frequency of hospitalisations and (b) frequency of occurrence of painful episodes. Methods: AYAs aged 14 to 25 years with SCD attending routine consultations at two Benin clinics—the National Sickle Cell Disease Centre (CPMI-NFED) and the Haematology clinic of the University Teaching Hospital (CUMAS), completed a questionnaire assessing SCD knowledge and health literacy (Health Literacy Measure for Adolescents, HELMA). Results: Most participants had inadequate health literacy: 72.1% at CPMI-NFED and 82.1% at CUMAS, with no significant differences between centres (t = 1.642, p = 0.200). CPMI-NFED participants had higher SCD knowledge than those at CUMAS (t = 4.303, p = 0.038). Higher SCD knowledge (β = 0.466; p < 0.001) and health literacy (β = 5.081; p < 0.001) were associated with older age. Tertiary-level education was associated with higher health literacy (β = 4.286; p = 0.023). Participants with high SCD knowledge experienced fewer painful episodes (IRR = 0.777, p = 0.046), but no significant differences in hospital admissions (IRR = 0.764, p = 0.162). Conclusions: Inadequate health literacy is common in AYAs with SCD in Benin. Having high SCD knowledge may have an impact on the occurrence of painful episodes.

1. Introduction

Sickle Cell Disease (SCD) affects millions of people globally and is a major global health challenge [1]. Over the last decade, the number of people living with SCD has considerably increased. This increase is more pronounced in the Caribbean and Sub-Saharan Africa, and can be explained by factors such as population growth and improved survival rates in early ages [1].

SCD is a chronic genetic blood disorder characterised by the presence of abnormal haemoglobin, known as haemoglobin S or HbS, in red blood cells. Haemoglobin carries oxygen throughout the body [2]. Abnormal haemoglobin produces deformed red blood cells, which grow rigid and take a sickle or crescent shape. These deformed red blood cells can block small blood vessels and impede normal blood flow, causing painful vaso-occlusive crises that often necessitate emergency hospital visits and hospitalizations [3,4]. In addition, the blockages caused by these sickle or crescent-shaped cells can also cause anaemia, organ damage (particularly in the spleen, kidneys, and lungs) [5], or impaired immune function and increase susceptibility to infections [6]. These complications present significant health challenges for people living with the disease.

To make appropriate decisions, it is important that adolescents and young adults with SCD reach an adequate level of health literacy, defined as their ability to obtain, understand, and effectively use basic health information [7]. To gradually assume greater responsibility in the management of their own health, adolescents and young adults need disease-specific knowledge to successfully take over the ownership of their chronic conditions [8]. Providing adolescents with a comprehensive understanding of their disease, its symptoms, treatment options, and potential complications will empower them to actively participate in their own healthcare, increase their ability to self-manage, and improve their health outcomes [9]. In addition to health literacy, disease-specific knowledge plays a pivotal role in the successful management of chronic conditions. Having a comprehensive understanding of one’s specific disease, its symptoms, treatment options, and potential complications empowers individuals to actively participate in their healthcare journey, enhances their ability for self-management, and contributes to overall health outcomes [10,11]. Despite the growing recognition of the importance of health literacy and disease knowledge for health outcomes in chronic diseases, few studies have examined this in SCD [8,11,12]. A few studies have examined health literacy in adolescents and the relationship between caregiver’s health literacy and SCD knowledge and health outcomes in children [12,13]. Studies evaluating the relationship between health literacy, disease knowledge, and health outcomes in an adolescent population with SCD are currently lacking.

In Cotonou, Benin, the management of SCD is majorly done in two different institutions. The first is the National Sickle Cell Disease Centre of Benin (New-Born Screening of Sickle Cell Disease and Comprehensive Clinical Care Programs, CPMI-NFED). This institution plays a pivotal role in providing care and support to pregnant women, nursing mothers, children, and adolescents with SCD. Children and adolescents managed at this centre are enrolled between the ages of 0 and 7 years and are treated there until they become adults. The institution benefits from special intervention funding from the country’s health department, making it possible for the patients to benefit from subsidised treatments. Patients are usually accompanied by specialised nurses, who take extra time to provide information and education to the patients and their parents when they are enrolled. In addition, periodic information programmes for the SCD patients and their parents where topics relevant to living with SCD are discussed are organised. The second major institution is the Haematology clinic of the University Teaching Hospital (CUMAS) where all blood diseases including SCD are managed. At this clinic, both adolescent and adult patients are treated. Patients who are treated at this unit do not benefit from any subsidised treatments, nor from any other initiatives. Because SCD knowledge and health literacy have not been evaluated in the SCD population in Benin, it is not known if there are differences between these two centres.

This study aimed to explore the relationships between health literacy, disease knowledge, and socio-demographic factors in this specific population at these two centres. The specific aims of the study were to: (I) describe and compare SCD knowledge and health literacy levels in adolescents and young adults (AYA) with SCD managed at both the CPMI-NFED and CUMAS in Benin, (II) examine associations between genotype, socio-demographic factors, health literacy, and SCD knowledge, and (III) examine the associations between patients SCD knowledge, health literacy, socio-demographic factors, and (a) frequency of hospitalisations and (b) frequency of occurrence of painful episodes.

2. Materials and Methods

2.1. Sample and Procedure

We used a cross-sectional design and convenience sampling. Eligible participants were SCD patients treated at the CPMI-NFED and the CUMAS. They were considered eligible for the study if they were: (I) aged 14 to 25 years at the time of the study, and (II) were able to read and write in French. Patients were informed about the study by a research assistant while waiting for their routine consultation. Those who indicated interest in participating in the study were then directed to a waiting room where they were informed about the study in detail. They were then handed an information note outlining the study details and the researcher’s contact information. Subsequently, those who agreed to participate signed the informed consent form before completing the questionnaires. For those who were less than 18 years of age, informed consent was obtained from their accompanying parent or guardian while they provided written assent to participate in the study.

2.2. Measures

2.2.1. SCD Knowledge

SCD knowledge was assessed using an SCD knowledge questionnaire that was locally developed in collaboration with SCD specialists. It was designed to cover topics considered relevant, including general SCD knowledge, disease management, identification of symptoms, and prevention of complications. While the instrument has not been psychometrically validated, it was intended to provide exploratory baseline data on disease knowledge among adolescents and young adults with SCD. This approach allowed the study to capture context-specific insights that can guide the development of future validated tools. The SCD knowledge questionnaire featured a total of 13 questions, each carrying a score of 1 point for a correct answer. Among these questions, one presented four answer options, while another included five answer options, with each correct response earning 1 point. As a result, participants could achieve a maximum score of 20 points in the disease knowledge questionnaire. To evaluate SCD knowledge level, we considered 70% of correct answers as indicative of high knowledge about the disease.

2.2.2. Health Literacy

The Health Literacy Measurement for Adolescents (HELMA) questionnaire is a comprehensive instrument designed to assess health literacy across various domains. In this study, we used the French version of the HELMA, which we have previously evaluated and reported in a published paper [13]. The HELMA questionnaire comprises 44 items categorised into eight domains. Access, Reading, Understanding, Appraisal, Use, Communication, Self-efficacy, and Numeracy. Participants responded to items 1–41 using a five-point Likert scale (Never = 1, Rarely = 2, Sometimes = 3, Usually = 4, Always = 5), while the last three items under Numeracy involved mathematical calculations related to nutritional elements in a milk container and parameters for computing Body Mass Index (BMI). The scoring system for numeracy differed from the other items, assigning a score of 1 for incorrect answers and 5 for correct answers. The raw scores from all domains were then summed up and linearly transferred to a score ranging from 0 to 100, providing the total health literacy score. The categorisation of HELMA scores includes Inadequate (0–50.0), Problematic (50.1–66.0), Sufficient (66.1–84.0), and Excellent (84.1–100). This classification, established by the authors of the HELMA tool, combines ‘Inadequate’ and ‘Problematic’ scores into ‘inadequate’ health literacy, while ‘Sufficient’ and ‘Excellent’ scores are grouped as ‘adequate’ health literacy [14].

2.2.3. Health Outcomes

Two outcome measures of interest were collected: the number of hospital admissions (defined by hospital stays that included at least an overnight stay) and the frequency of occurrence of painful episodes (defined by pain that required medication or emergency hospital visits) in the last year. Both outcome measures were self-reported by participants.

Socio-demographic characteristics included the age, sex, level of education, parents’ education level, and parental employment status (salaried employment, self-employed, not employed). Clinical characteristics included information on the genotype of the disease: βS/βS, βS/βC and βS/β0.

2.3. Analyses

All statistical analyses were carried out using Stata 17, College Station, TX, USA, the R Statistical Software (version 4.0.2, R Core Team, 2020) and the Statistical Package for the Social Sciences (SPSS^®) version 25 (IBM Corp., Armonk, NY, USA). Means and standard deviations were summarised for the continuous variables, while frequencies were summarised for the categorical variables. An independent sample t-test was used to compare the mean health literacy and SCD knowledge scores between the CU-MAS and CPMI-NFED centres. A chi-square test of proportions was used to compare the proportions of inadequate vs. adequate health literacy levels and high vs. low SCD knowledge levels in both centres. Simple linear regression was used to examine the relationships between health literacy and SCD knowledge as outcome variables and the participants’ background characteristics as predictor variables. Poisson regression models were conducted to examine the associations between hospital admissions and painful episodes as outcome variables and health literacy and SCD knowledge as predictors while controlling for participants clinical and sociodemographic characteristics.

3. Results

The study sample included 131 adolescents and young adults with a mean age of 17. 5 years (range: from 14–24 years). There were 66 males (50.4%) Most of the patients had βS/βS genotype (80.9%), a history of transfusion (89.3%), and secondary level education. Descriptive statistics are presented in

Table 1. Background Characteristics of participants.

	Mean	SD
Age	17.5	2.5
	N	%
SCD Type
βS/βS	106	80.9
βS/βC & βS/β0	25	19.1
Transfusion History
Yes	117	89.3
No	14	10.7
Treatment Centre
CUMAS	86	65.6
CPMI-NFED	45	34.4
Sex
Male	66	50.4
Female	65	49.6
Education Level
Secondary	78	59.5
Tertiary	53	40.5
Father’s Education Level
Primary	57	43.5
Secondary	60	45.8
tertiary	14	10.7
Mother’s Education Level
Primary	31	23.7
Secondary	65	49.6
Tertiary	35	26.7
Father’s Employment
Salaried	57	43.5
Self-employed	67	51.2
Unemployed	6	5.3
Mother’s Employment
Salaried	36	27.5
Self-employed	82	62.6
Unemployed	13	9.9
Health Literacy
Inadequate	99	75.6
Adequate	32	24.4
Disease Knowledge
Low	54	41.2
High	77	58.8

.

The mean health literacy score of the participants recruited from the CUMAS group (mean = 56.0, SD = 19.6) did not differ significantly from the CPMI-NFED group (mean = 55.5, SD = 15.5; p = 0.901). No significant differences were found in the proportion of participants with inadequate health literacy levels in both the CUMAS centre and the CPMI-NFED centre (Figure 1; t = 1.642, p = 0.200). Knowledge gaps were identified for antibiotic use (83%), stroke (51%), and retinopathies (46%) (Figure 2).

Regarding aim II, only age was found to be significantly associated with SCD knowledge (β = 0.466; p =< 0.001) and health literacy (β = 5.081; p =< 0.001). SCD knowledge and literacy scores were higher in older participants (

Table 2. Association between SCD Knowledge, Health Literacy and Socio-demographic characteristics.

	SCD Knowledge			Health Literacy
	β	p Value	CI	β	p Value	CI
Age	0.466	0.000	[0.263, 0.670]	5.810	0.000	[5.084, 6.535]
Female	−0.284	0.552	[−1.227, 0.659]	0.052	0.976	[−3.316, 3.420]
Tertiary (ref: secondary education)	−0.071	0.892	[−1.105, 0.093]	4.286	0.023	[0.593, 7.978]
Father’s Education Level (ref: tertiary education)
Secondary	0.273	0.586	[−0.717, 1.263]	3.434	0.057	[−0.101, 6.970]
Primary	0.017	0.984	[−1.659, 1.694]	2.917	0.337	[−3.070, 8.904]
Mother Education Level (ref: tertiary education)
Secondary	0.963	0.125	[−0.270, 2.195]	−3.819	0.088	[−8.221, 0.583]
Primary	0.587	0.408	[−0.812, 1.985]	0.467	0.853	[−4.528, 5.462]
Father’s Employment Status (ref: employed)
Self-employed	−0.094	0.842	[−1.031, 0.842]	1.785	0.293	[−1.562, 5.132]
Unemployed	−0.346	0.751	[−2.501, 1.809]	3.864	0.322	[−3.834, 11.561]
Mother’s employment Status (ref: employed)
Self-employed	0.569	0.314	[−0.546, 1.685]	−0.263	0.896	[−4.247, 3.72]
Unemployed	−1.027	0.254	[−2.801, 0.747]	−2.188	0.495	[−8.523, 4.147]

Significant values are in bold. CI = Confidence Interval.

).

To address aim III, we analysed the association between the occurrence of painful episodes (

Table 3. Association between painful episodes, and SCD knowledge and health literacy.

	IRR	p Value	CI	IRR	p Value	CI
High SCD knowledge	0.777	0.046	[0.607, 0.995]
Adequate Health Literacy				0.662	0.075	[0.42, 1.043]
Age	0.974	0.397	[0.917, 1.035]	1.016	0.704	[0.935, 1.105]
Female	1.130	0.350	[0.875, 1.459]	1.189	0.192	[0.917, 1.543]
Tertiary Education	0.964	0.804	[0.725, 1.283]	0.934	0.640	[0.701, 1.244]
Father’s Education Level
Secondary	0.921	0.534	[0.709, 1.195]	0.904	0.447	[0.697, 1.172]
Primary	0.842	0.454	[0.538, 1.320]	0.847	0.467	[0.542, 1.325]
Mother Education Level
Secondary	1.063	0.717	[0.763, 1.482]	0.994	0.971	[0.713, 1.386]
Primary	1.077	0.691	[0.747, 1.554]	1.063	0.745	[0.736, 1.536]
Father’s Employment Status
Self-employed	1.019	0.885	[0.794, 1.306]	1.015	0.905	[0.793, 1.300]
Unemployed	0.703	0.308	[0.358, 1.383]	0.697	0.294	[0.355, 1.368]
Mother’s employment Status
Self-employed	1.097	0.542	[0.815, 1.477]	1.094	0.554	[0.813, 1.471]
Unemployed	1.212	0.427	[0.755, 1.946]	1.210	0.425	[0.757, 1.934]
Transfusion history	1.158	0.425	[0.807, 1.662]	1.227	0.266	[0.855, 1.760]
SCD Type	0.989	0.946	[0.716, 1.366]	1.015	0.929	[0.735, 1.401]

IRR = incidence rate ratio: Significant values are in bold. CI = Confidence Interval.

), and frequency of hospital admissions (

Table 4. Association between hospital admission and SCD knowledge and health literacy.

	IRR	p Value	CI	IRR	p Value	CI
High SCD knowledge	0.764	0.162	[0.524, 1.114]
Adequate Health Literacy				1.244	0.528	[0.632, 2.448]
Age	0.982	0.702	[0.896, 1.076]	0.939	0.345	[0.825, 1.070]
Female	0.907	0.618	[0.618, 1.331]	0.893	0.572	[0.604, 1.321]
Tertiary Education	0.968	0.880	[0.634, 1.486]	0.991	0.965	[0.645, 1.521]
Father’s Education Level
Secondary	1.023	0.909	[0.689, 1.521]	1.009	0.966	[0.680, 1.497]
Primary	1.012	0.971	[0.525, 1.950]	1.076	0.829	[0.555, 2.085]
Mother Education Level
Secondary	1.426	0.195	[0.834, 2.436]	1.396	0.225	[0.814, 2.393]
Primary	1.711	0.067	[0.964, 3.037]	1.683	0.076	[0.947, 2.992]
Father’s Employment Status
Self-employed	1.194	0.363	[0.815, 1.749]	1.203	0.340	[0.823, 1.759]
Unemployed	0.340	0.145	[0.080, 1.451]	0.353	0.159	[0.083, 1.504]
Mother’s employment Status
Self-employed	0.901	0.649	[0.577, 1.409]	0.897	0.633	[0.575, 1.400]
Unemployed	0.807	0.591	[0.369, 1.766]	0.854	0.692	[0.391, 1.866]
Transfusion history	0.979	0.943	[0.549, 1.746]	1.003	0.992	[0.563, 1.786]
SCD Type	0.849	0.550	[0.497, 1.451]	0.834	0.507	[0.487, 1.427]

IRR = incidence rate ratio: CI = Confidence Interval.

), as outcome variables with SCD knowledge and health literacy while adjusting for participant’s characteristics. Participants with high SCD knowledge reported fewer painful episode occurrences (IRR = 0.777, p = 0.046). Similarly, though not statistically significant, participants with adequate health literacy levels had fewer painful episode occurrences compared to those with inadequate health literacy levels (IRR = 0.662, p = 0.075).

4. Discussion

Our findings show that most participants had inadequate health literacy levels irrespective of the treatment centre (CPMU-NFED or CUMAS). However, participants at CPMI-NFED had higher levels of SCD knowledge compared to those at CUMAS. Health literacy and SCD knowledge were higher in older patients. In addition, health literacy was higher in participants with tertiary-level education. Health literacy was not associated with painful episodes and hospital admissions after adjusting for demographic and clinical characteristics. Despite having fewer painful episodes, patients with high SCD knowledge levels showed no significant differences in hospital admissions.

To our knowledge, this study represents a first attempt to examine health literacy, disease knowledge, and its impacts on key health outcomes in SCD in Benin. For our first aim, we described and compared SCD knowledge and health literacy levels among adolescents and young adults (AYA) receiving care at two healthcare centres in Benin, which differ in funding received from the state. We found that most participants exhibited inadequate health literacy levels, regardless of the treatment centre (CPMI-NFED or CUMAS). Comparisons with data from our previously published validation study indicate that low health literacy is not unique to individuals with SCD, but reflects broader challenges observed among AYA in the general population in Benin [13]. This is consistent with findings from studies on health literacy conducted in adolescents with SCD in the US [8,15]. Although these studies used different health literacy instruments, the REALM-Teen and Newest Vital Sign (NVS), they both found a high prevalence of inadequate health literacy in this population. However, while health literacy levels did not differ significantly between participants from the CPMI-NFED and CUMAS centres, we observed differences in their SCD knowledge. This variation may reflect the differences in the care management at both centres. Although the two centres differ in their level of state funding, the comparison extends beyond subsidised versus non-subsidised care. These institutions differ in organisational structure, resource availability, and approach to patient education. CPMI-NFED integrates structured educational activities, while CUMAS provides routine medical follow-up with no formalised information sessions. This finding suggests that institutional practices may play an important role in shaping disease-specific knowledge. Examining both centres provides contextual insights into how variations in institutional practices and resources may influence patients’ disease knowledge and health literacy. Our results underscore the importance of tailored educational initiatives to enhance SCD knowledge among AYA in Benin.

In prior studies involving adolescents and young adults in a general population, health literacy has been consistently associated with sociodemographic factors such as education, parental education level, parental employment status, age [16] and sex [16,17]. Studies conducted in the AYA SCD population report similar findings for age and educational level [15,18,19], but not for sex [15]. In our study, we found that older individuals and those with tertiary-level education had higher health literacy levels. However, no associations were fond between sex, parental education levels, parental occupation, and health literacy levels. Factors influencing health literacy levels may vary across different health conditions and patient populations. This underscores the importance of tailored interventions and targeted strategies to address the unique needs of individuals affected by SCD.

Health literacy is important in assessing health information and is also positively related to an understanding of the treatment [20]. Previous research has shown that health literacy is correlated with hospital visits and hospital admissions in other chronic conditions [21,22,23,24]. We found no significant relationships between health literacy and hospital admissions. This finding is however consistent with the findings of the few studies that have evaluated the relationship between health literacy and hospital admissions in SCD [12,18]. Hospital admissions in SCD are often triggered by acute events such as severe pain crises or infections, which may not be fully preventable through literacy or knowledge alone [25]. We found significant gaps in the knowledge of the complications, appropriate responses to SCD signs, and the use of antibiotics. Participants demonstrated a particularly low awareness of serious complications such as stroke and retinopathies, which are critical to prevent long-term damage in SCD patients [26]. Similarly, essential signs of SCD complications like repeated fevers, growth retardation, severe headaches, and jaundice were frequently unrecognised. Furthermore, some participants were unsure about appropriate responses to signs of complications, such as when to seek medical advice versus when to manage symptoms at home. This distinction is important, as incorrect actions or delays in seeking proper medical intervention can exacerbate the severity of complications, potentially leading to more critical health issues [27,28]. We observed a misunderstanding regarding the use of antibiotics, with many participants incorrectly believing that antibiotics should be used pre-emptively at home to prevent infections. This misconception poses a significant public health risk, promoting antibiotic resistance and reducing the effectiveness of these critical drugs when genuinely needed [29,30]. Importantly, these findings point to actionable targets for interventions. Tailored educational programmes that emphasise recognition of critical SCD complications, appropriate symptom management, and correct antibiotic use could directly address these deficits. Integrating structured patient education into routine care, using culturally relevant materials and family-inclusive approaches, may improve patient understanding and self-management [31,32].

The predictors of disease knowledge in chronic diseases encompass a wide range of factors such as education [20,33], age [20,34], family history of chronic illness, duration of illness [35] and health literacy level [33]. Within the context of SCD, the predictors of SCD knowledge in adolescents and young adults have not been extensively studied. One study that evaluated disease knowledge in adolescents [36] found age and household income as important predictors of disease knowledge. In this study, we observed that older participants had higher SCD knowledge levels. This is in line with other studies on chronic conditions that show that people who have had a longer duration of their illness have higher disease knowledge levels [11,35,37]. In the case of SCD, given that they live with the condition from birth, older individuals are more likely to accumulate knowledge through first-hand experiences and interactions with healthcare providers during routine hospital visits, emergency hospital visits, and hospital admissions.

We found that disease knowledge was significantly associated with painful episodes after adjusting for both socio-demographic characteristics and clinical characteristics (SCD type, and history of transfusion). Individuals with high disease knowledge levels had fewer painful episodes. This is supported by other studies in SCD [12,36]. Understanding the nature of one’s illness, symptoms, and complications is important for patients with SCD. This knowledge forms the basis for taking informed decisions about their health in terms of recognising early signs of deterioration, implementing preventive measures, and seeking appropriate medical care when needed. These findings suggest that disease-specific knowledge can directly influence patient behaviours, independent of general health literacy, and highlight the importance of targeted educational interventions in low-resource settings. Furthermore, we observed that health literacy was significantly associated with disease knowledge. Individuals with higher health literacy levels are better equipped to access, understand, and utilise health information effectively, which likely contributes to their enhanced disease knowledge [12,38,39]. Enhanced knowledge, in turn, informs self-management decisions that may reduce painful episodes and improve overall health outcomes. Taken together, these results indicate that disease knowledge may serve as a key mediator between health literacy and clinical outcomes [40]. The interplay between health literacy and disease knowledge underscores the importance of multi-level educational interventions. Efforts to improve patient outcomes in low-resource settings should consider strategies that simultaneously strengthen general health literacy and provide targeted, disease-specific education. For example, structured educational sessions at treatment centres, culturally adapted learning materials, can leverage existing literacy skills to maximise knowledge acquisition and application.

A major strength of our study is the use of a health literacy instrument, which we have previously validated in a similar age population in Benin [13]. Secondly, we were able to compare the outcomes in two different treatment centres, which increases the scope in which the results can be interpreted. Finally, we identified some relevant knowledge gaps such as symptoms recognition and antibiotic use specific to this population in Benin.

Nevertheless, our study is not without limitations. Psychometric validation was not done for the SCD knowledge questionnaire. Consequently, findings should be interpreted cautiously, and their generalizability is limited. The locally developed SCD knowledge questionnaire could serve as a basis for psychometric validation and adaptation in similar low-resource settings. Future studies should consider evaluating the psychometric properties of the questionnaire. The use of self-report questionnaires to collect data on outcome variables, such as the frequency of crisis episodes and hospital admissions, rather than accessing information directly from medical records, may introduce a recall bias.

Overall, our study contributes to the existing literature by providing insights into the levels of SCD knowledge, including the SCD knowledge gaps and health literacy among AYA in Benin and their associations with clinical outcomes such as hospital admissions and painful episodes. These findings underscore the importance of multi-level, contextually tailored educational strategies that address both individual and institutional determinants of knowledge. By highlighting specific gaps in recognition of complications and correct medication use, this study provides actionable guidance for designing interventions that enhance self-management and potentially improve clinical outcomes. Furthermore, our findings contribute to the conceptual understanding of how health literacy and disease-specific knowledge interact to influence behaviour and outcomes in low-resource settings, offering a foundation for future research and theory development. From a broader perspective, these insights have important implications for health policy and programme design in similar contexts. Strengthening structured, culturally adapted, and family-inclusive education within routine care could improve disease self-management and reduce the burden of preventable complications. Integrating such approaches into national SCD control strategies and adolescent health initiatives would help align clinical practice with the realities of resource-constrained settings. Ultimately, by emphasising both individual-level knowledge and institutional-level educational structures, this study provides an evidence-based foundation for scalable, sustainable interventions that can improve health outcomes among young people living with SCD in the region.