Sickle Cell Disease (SCD) is a genetic disorder of the blood that significantly impacts the health and well-being of affected individuals. Characterized by the presence of abnormal hemoglobin, SCD causes red blood cells to adopt a sickle shape, leading to numerous complications such as vaso-occlusive crises, chronic pain, increased susceptibility to infections, and organ damage. Despite advances in medical research and treatment, SCD continues to pose a major public health challenge, particularly in regions with limited healthcare resources and varying levels of public awareness.^1-6 In India, the burden of SCD is substantial, especially among certain ethnic groups and communities. The state of Haryana, with its diverse demographic and socio-economic landscape, presents a compelling case for examining public awareness and understanding of SCD. District Ambala, in particular, offers a microcosm of these broader issues, making it an ideal setting for this study. Assessing the knowledge and perceptions of SCD among the residents of District Ambala can provide critical insights into the existing awareness levels and highlight areas where targeted educational interventions are necessary.

Public awareness is a cornerstone in the effective management and prevention of SCD. Awareness campaigns and educational programs are essential for promoting early diagnosis, encouraging timely medical intervention, and improving disease management strategies. Knowledge about the genetic basis of SCD, its symptoms, potential complications, and available treatments can empower individuals to make informed health decisions, seek appropriate care, and adhere to management protocols, thereby enhancing their quality of life.

This study aims to evaluate the level of awareness and knowledge about SCD among the general population of District Ambala, Haryana. By investigating the socio-demographic factors that influence knowledge levels, this research seeks to uncover misconceptions and identify specific areas where public health initiatives can be most impactful. The study employs a cross-sectional survey design, targeting adults who have been residents of the district for at least 12 months. Data collection will be conducted through an online questionnaire, ensuring a comprehensive and representative sample.

The findings from this study are expected to be instrumental in guiding future health communication strategies. By tailoring educational programs to address the identified gaps in knowledge, public health authorities can enhance SCD literacy and support effective disease management in District Ambala and beyond. This research ultimately aims to contribute to the broader goal of improving health outcomes for individuals with SCD through informed public awareness and proactive health measures.

Objectives of the Study:

The primary objective is to gauge awareness and knowledge about Sickle Cell Disease among general public of District Amabala , Haryana. 

RESEARCH METHODOLOGY

• Research Approach -Descriptive

• Research Design-  Cross-sectional survey design

• Study area: District Amabala , Haryana

• Study duration- between January  2024 to May 2024

• Study population: The study's target population encompassed all adults aged 18 and above who had been residents of District Amabala , Haryana for a minimum of 12 months

• Sample size- A robust sample size of 400 adults was determined using a 95% confidence level, an estimated knowledge level of 50% regarding Sickle Cell Disease, a precise 5% absolute error margin, and a conservative 5% non-response rate. 

• Study tool: A google form questionnaire consisting of questions regarding socio-demography and knowledge regarding Sickle Cell Disease was created. The questionnaire was initially pre-tested on a small number of participants to identify any difficulty in understanding by the respondents. 

• Description of Tool- 

1. Demographic data survey instrument: The demographic form elicited information on participants’ background: age, marital status, religion, employment, education and many more.

2. Questionnaire: The questionnaire contains 20 structured knowledge related questions regarding Sickle Cell Disease. One mark was given for each correct answer and zero for incorrect answer. The maximum score was 20 and minimum score was zero. Scoring was done on the basis of marks as >80%(16-20)=very good,60-79%(12-15) =Good,41-59% ( 8-11)=Fair,<40% (< 8)=poor

• Validity of tool - by the experts in this field

• Data collection- Data was collected under the guidance of supervisors. The google form questionnaire was circulated among the residents of District Amabala , Haryana for responses using online modes like e-mail and social media platforms like Whatsapp groups, Facebook, Instagram and Linkedin till the 400 responses were collected. 

• Data analysis- Data was collected and entered in Microsoft excel spread sheet, cleaned for errors and analyzed with Epi Info V7 Software with appropriate statistical test in terms of frequencies and percentage. 

• Ethical Considerations- Participants confidentiality and anonymity was maintained. 

RESULTS

The study collected data from 400 participants residing in District Amabala, Haryana, providing a comprehensive overview of their socio-demographic characteristics and knowledge levels regarding sickle cell disease. The study population of 400 participants from District Ambala, Haryana, showcased diverse socio-demographic characteristics. The age distribution was fairly even, with the largest group being 29-38 years old (27.8%), followed by those aged 49 and above (25.8%), 18-28 years old (24.0%), and 39-48 years old (22.5%). The gender split was 55.5% male and 44.5% female. Marital status revealed that 53.5% were married, 39.5% single, and 7% identified as 'others'. In terms of religion, a majority were Hindu (70%), with Muslims (10.8%), Sikhs (13%), and others (6.3%) also represented. Employment status showed that 53% were employed, 22.8% unemployed, and 24.3% students. Educational attainment varied, with 45.5% graduates, 29.5% high school educated, and 12.5% each for those below high school and postgraduates.

Table 1: Socio-Demographic Variables of the Study Population (N=400)

The knowledge assessment of Sickle Cell Disease (SCD) among the 400 participants indicated varying degrees of awareness. A high percentage (72.5%) correctly identified what SCD is, while 62.5% knew its cause. Awareness of symptoms was 55%, and understanding of diagnosis methods was lower at 46.3%. Knowledge of risk factors was at 49.3%, inheritance at 43.8%, and complications at 68.8%. Awareness of available treatments stood at 57.5%, management strategies at 59.5%, and the impact of lifestyle changes at 48%. Knowledge of life expectancy for SCD patients was 65.8%, and the role of bone marrow transplants was understood by 40.5%. Daily life impacts were known by 55.3%, and the possibility of a cure was recognized by 69.5%. Awareness of how SCD affects children differently was 44.8%, available support resources were known by 63.3%, and dietary influences were understood by 52.8%. Knowledge of new treatments was 41.8%, the importance of regular check-ups was 64.8%, and the steps to take upon diagnosis were known by 70.3%.

Table 2: Knowledge Regarding Sickle Cell Disease (N=400)

The overall knowledge scores of the 400 participants were categorized into four levels: 'Very Good', 'Good', 'Fair', and 'Poor'. Twenty-two point eight percent of participants scored in the 'Very Good' range (16-20 correct answers), 27.3% in the 'Good' range (12-15 correct answers), 29.8% in the 'Fair' range (8-11 correct answers), and 20.3% in the 'Poor' range (less than 8 correct answers). This distribution highlights that while a significant portion of the population has a fair to good understanding of SCD, there is still a notable percentage with poor knowledge, indicating areas where targeted educational interventions are necessary.

Table 3: Overall Knowledge Score Categories

The univariate analysis of socio-demographic variables against knowledge levels revealed significant associations. Age-wise, the 29-38 age group had the highest 'Very Good' scores (40.9%), while the 49 and above group had the highest 'Poor' scores (35.9%). Males generally had higher knowledge scores compared to females, with 54.2% of 'Very Good' scores versus 39.8% for females. Marital status showed married individuals had better knowledge, with 44.6% in the 'Very Good' category, compared to singles and others. Hindus demonstrated higher knowledge levels with 63.5% 'Very Good' scores, while Muslims, Sikhs, and others had lower percentages. Employment status correlated with higher knowledge scores, with employed individuals scoring 55.2% in the 'Very Good' category. Educational attainment showed that graduates and postgraduates had higher knowledge levels, with 47.9% and 18.8% in the 'Very Good' category, respectively, compared to those with lower educational levels.

Table 4: Univariate Analysis of Socio-Demographic Variables and Knowledge Level

DISCUSSION

The study aimed to evaluate the level of awareness and knowledge about Sickle Cell Disease (SCD) among the general population of District Ambala, Haryana, providing critical insights into the existing awareness levels and highlighting areas where targeted educational interventions are necessary. The findings offer a comprehensive understanding of the socio-demographic characteristics and knowledge levels regarding SCD among the residents, shedding light on various factors influencing awareness and misconceptions about the disease.

The socio-demographic data revealed a diverse population in District Ambala, with a balanced representation across different age groups and genders. The largest age group was 29-38 years old, followed by those aged 49 and above, indicating a mature population with potentially greater exposure to health information. The gender distribution showed a slightly higher percentage of males (55.5%) compared to females (44.5%), which may reflect the gender dynamics within the community.

Marital status highlighted that a majority of the respondents were married (53.5%), suggesting potential family health decision-making influences on SCD awareness. The religious composition was predominantly Hindu (70%), with Muslims (10.8%) and Sikhs (13%) also significantly represented, indicating the need for culturally tailored awareness programs. Employment status showed that more than half of the participants were employed (53%), which could correlate with access to health information and resources. Educational attainment varied, with a significant portion being graduates (45.5%), suggesting a relatively educated population, yet highlighting the necessity to bridge knowledge gaps among those with lower educational levels.

The assessment of knowledge levels regarding SCD demonstrated varying degrees of awareness among the participants. A high percentage (72.5%) correctly identified what SCD is, indicating a general familiarity with the disease. However, the understanding of specific aspects such as the cause (62.5%), symptoms (55%), and diagnosis methods (46.3%) was lower, highlighting areas needing focused education.

Knowledge of risk factors (49.3%), inheritance patterns (43.8%), and complications (68.8%) further underscored gaps in understanding crucial elements of SCD. While awareness of available treatments (57.5%) and management strategies (59.5%) was moderate, the impact of lifestyle changes (48%) and the role of bone marrow transplants (40.5%) were less understood, pointing to significant areas for educational intervention.

Participants' awareness of life expectancy for SCD patients (65.8%), daily life impacts (55.3%), and the possibility of a cure (69.5%) indicated a mixed level of knowledge. The understanding of how SCD affects children differently (44.8%) and available support resources (63.3%) showed further areas for improvement. Knowledge of dietary influences (52.8%), new treatments (41.8%), the importance of regular check-ups (64.8%), and steps to take upon diagnosis (70.3%) provided additional insights into specific educational needs.

The overall knowledge scores categorized participants into 'Very Good', 'Good', 'Fair', and 'Poor' levels. While 22.8% scored in the 'Very Good' range and 27.3% in the 'Good' range, a significant portion (29.8%) had 'Fair' knowledge, and 20.3% had 'Poor' knowledge. This distribution indicates that while a substantial portion of the population has a fair to good understanding of SCD, there is a critical need to address the notable percentage with poor knowledge. Targeted educational interventions are necessary to elevate the overall knowledge levels and correct misconceptions.

The univariate analysis revealed significant associations between socio-demographic variables and knowledge levels. Age-wise, younger participants (29-38 years) had higher 'Very Good' scores, while older participants (49 and above) had higher 'Poor' scores, suggesting that younger individuals may have better access to health information or be more receptive to educational interventions. Gender differences showed that males generally had higher knowledge scores, indicating potential gender disparities in health information access or engagement.

Marital status highlighted that married individuals had better knowledge, possibly due to family health responsibilities prompting greater awareness. Religious differences indicated that Hindus had higher knowledge levels, suggesting the need for more inclusive awareness programs across different religious communities. Employment status correlated with higher knowledge scores among employed individuals, emphasizing the role of workplace health programs in disseminating information. Educational attainment showed that higher education levels were associated with better knowledge, underscoring the importance of educational initiatives targeting those with lower educational backgrounds.

Implications for Public Health Interventions

The findings from this study are instrumental in guiding future health communication strategies. The identified knowledge gaps and misconceptions highlight specific areas where targeted educational interventions can be most impactful. Public health authorities should consider implementing culturally sensitive and demographically tailored awareness campaigns to address the diverse needs of the population in District Ambala.

Educational programs should focus on enhancing understanding of the genetic basis, symptoms, diagnosis, risk factors, and management of SCD. Special emphasis should be placed on educating older adults, females, and individuals with lower educational levels. Moreover, leveraging digital platforms and social media, as utilized in this study, can effectively reach a broad audience, ensuring comprehensive and accessible health information dissemination.^7-12

CONCLUSION

The study on the awareness and knowledge of Sickle Cell Disease (SCD) among the general population of District Ambala, Haryana, reveals significant socio-demographic disparities in understanding the disease. While a substantial portion of the population exhibits a fair to good knowledge level, critical gaps remain, particularly among older adults, females, and those with lower educational backgrounds. The findings underscore the necessity for targeted educational interventions and culturally sensitive awareness campaigns to address these gaps and misconceptions. By enhancing SCD literacy through tailored public health strategies, leveraging digital platforms for broad reach, and focusing on key aspects such as genetic basis, symptoms, risk factors, and management, public health authorities can improve early diagnosis, encourage timely medical intervention, and ultimately enhance health outcomes for individuals with SCD. This research provides a foundational framework for future health communication efforts, aiming to foster informed health decisions and proactive disease management in District Ambala and beyond.

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