Assessing the Public Understanding of Haemoglobinopathy Screening in the United Kingdom

Assessing the Public Understanding of Haemoglobinopathy Screening in the United Kingdom | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Assessing the Public Understanding of Haemoglobinopathy Screening in the United Kingdom Halima Oyindamola Suleiman, Kathryn Dudley This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8831037/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 15 You are reading this latest preprint version Abstract Background Haemoglobinopathy screening is a key public health tool for early detection and prevention of inherited blood disorders, such as sickle cell disease. With the introduction of a national antenatal screening programme in the United Kingdom (UK), laboratory techniques and diagnostic accuracy have improved, but public knowledge and understanding still influence screening programme success. This study examined public understanding of haemoglobinopathy screening in the West Midlands region of England, a high-prevalence region where many women are routinely tested during pregnancy. The study aimed to ascertain whether people were aware of their screening status and understood the result implications. Methods A cross-sectional survey was conducted in June 2024. Participants were recruited in the retail area of Wolverhampton city centre in the West Midlands region of England. Participants accessed a questionnaire via JISC Online Surveys. The questionnaire included demographic information, multiple-choice and free-text questions. Quantitative data was analysed using the Kruskal Wallis and Mann Whitney U tests, whilst qualitative data was analysed using thematic analysis. Responses were obtained from 55 participants. Results Of the 55 participants who completed the survey, the majority were female (84%) and between the ages of 35–44 years. Most were of African or African Caribbean ethnicity (71%). Although 53% reported a good self-perceived understanding of haemoglobinopathies, 60% believed that they were inadequately informed about the screening process. Of the 60% who had been pregnant in the last 10 years, only 20% were confident about their knowledge of screening. No associations between knowledge or testing history were found with age group, gender, ethnicity, history of pregnancy, or parental status. Poor awareness, fear and stigma, unknown screening consequences, cultural and linguistic barriers were identified in qualitative analysis. Conclusion The need for increased awareness of haemoglobinopathy screening was a strong recurring theme. Increasing public comprehension through social media, schools, community and religious centres and through targeted communication by relevant health professionals would address this lack of awareness. Strategies are required for overcoming various challenges regarding racial disparities, language barriers, and difficulties in accessing health information to ensure a better understanding of the importance of screening. Haemoglobinopathy haemoglobin prenatal diagnosis antenatal screening public awareness Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Figure 6 BACKGROUND Haemoglobin (Hb) is a tetrameric protein made up of two pairs of opposing globin protein chains. An oxygen-binding haem group located in the middle of each globin chain preserves and delivers oxygen to tissues. Located at 16p13.3 in the telomeric region of human chromosome 16, the α-globin gene cluster is made up of the Hb subunit alpha A 1 gene (HBA 1 /α 1 ) and the Hb subunit alpha A 2 gene (HBA 2 /α 2 ). The α 1 - and α 2 -globin genes are similar in their coding regions, and each consist of three exons and two introns. The β-globin proteins are encoded by the Hb subunit beta gene (HBB) located on human chromosome 11p15.4 in a gene cluster that consists of four other globin genes; the embryonic ε-globin gene, foetal γ-globin gene 1 and 2 and δ-globin gene (1). Adult haemoglobin consists of two subtypes: HbA 1 and HbA 2 . Most adult haemoglobin is in the form of Hb A 1 (α 2 β 2 ), which contains two alpha chains and two beta chains. This haemoglobin A 1 constitutes 95-97% of the total haemoglobin. The minor adult haemoglobin species is Hb A 2 (α 2 δ 2 ) which consists of two alpha chains and two delta chains. Hb A 2 forms up to 3.5% of total haemoglobin. Foetal haemoglobin, Hb F (α 2 γ 2 ) is present normally in newborn and early foetal life. From around six months of age, 90% of foetal haemoglobin is replaced by adult haemoglobin (HbA 1 ). Hb F consists of two alpha chains and two gamma chains. A small proportion of Hb F persists throughout adulthood, with up to 2% considered normal. Deoxyribonucleic acid (DNA) variations can lead to structural alterations in haemoglobin such as Sickle Cell Disease (SCD) or quantitative differences in synthesis of globin chains (e.g. α- or β-globin) known as thalassaemia. Clinical Significance of Haemoglobinopathies Haemoglobinopathies refer to a class of autosomal recessive haemolytic anaemias which affect the structure, function and production of haemoglobin. There are two different types of haemoglobinopathy which can arise from qualitative, monobasic changes in the DNA and subsequently in the globin chain structure, such as HbS, HbD, HbE and HbC or quantitative changes caused by reduced or absent globin chain synthesis as seen in α or β-thalassaemia. To date, over 1800 different variants that have been identified and some of these are clinically silent, whilst others have a severe clinical phenotype and significantly impact the quality of life of affected individuals (2). Haemoglobinopathies are widespread throughout the world, but SCD is most common across central Africa and the Caribbean, whilst thalassaemias are more prevalent in Southern Europe, North Africa and South and Southeast Asia. Population migration has resulted in haemoglobinopathies becoming more widespread and many countries have adopted haemoglobinopathy screening programmes. Approximately 7% of the worldwide population are carriers for haemoglobinopathies, presenting a significant challenge for healthcare services (3). Genetic inheritance of haemoglobinopathies is complex, but individuals are generally considered to be homozygous or heterozygous for a specific condition. For example, an individual who carries two copies of a β-globin chain mutation such as HbS would be considered homozygous for the condition and present a clinically significant phenotype. If an individual has only one copy of the mutated gene and one normal gene, they are heterozygous and usually do not display any, or possibly only very mild, clinical symptoms. Haemoglobinopathy diagnosis is further complicated by compound heterozygosity, which results from the inheritance of one different mutated gene from each parent. For example, a HbS mutation inherited from one parent and a HbC mutation inherited from the other which leads to a clinically significant condition known as HbSC disease. The presence of malarial parasite Plasmodium falciparum has acted as a specific trigger in promoting the prevalence of Haemoglobin S and thalassaemia as carrier status for these haemoglobinopathies is associated with a protective effect from malaria. This explains why some ethnic groups, such as those from Southern Turkey, Central India, Mediterranean regions, the Middle East, Asia, and sub-Saharan Africa, have a greater prevalence of haemoglobinopathies (1,4). Screening for Haemoglobinopathies Worldwide More than 330,000 affected babies are born each year worldwide, primarily with thalassaemia (17%) and SCD (83%) (5). To detect carriers and determine the likelihood of delivering significantly afflicted offspring haemoglobinopathy screening should be implemented and screening programmes are in place in many countries. By providing robust antenatal screening, genetic counselling and other strategies can be employed to reduce the incidence of individuals being born with clinically significant conditions (6). The incidence of haemoglobinopathies, variation in DNA, and cost efficacy are the primary criteria that influence the choice of a specific screening approach. In areas with high incidence, mass screening programmes that focus on individuals at various life phases, such as teenagers, women and men of reproductive age, or men who are partners with female carriers have been implemented (premarital, pre-conceptional, or prenatal screening). Cascade screening, or the screening of relatives is encouraged in areas with very little or high consanguinity rates (7). These screening programmes should ensure extensive outreach initiatives, consider social, cultural, and ethical issues of the population, provide thorough and prompt counselling to at-risk individuals or couples, and offer prenatal diagnosis (PND) to ensure maximum compliance and benefit (8). There are population screening programmes established for haemoglobinopathies on every continent in the world, covering both endemic and nonendemic regions (9). Screening for Haemoglobinopathies in the United Kingdom (U.K.) Due to population migration from endemic locations, haemoglobinopathies are now found across Europe, including in the UK. As a result, in 2006, an antenatal screening programme for haemoglobinopathies in England was introduced to offer screening to all pregnant women by 10 weeks gestation (10). Key performance indicators (KPI) of the screening programme require completion of the Family Origin Questionnaire (FOQ), promptness in scheduling screening tests, and prompt PND offer to women who are deemed to be at risk. Recent data for England screened 616,543 pregnant patients, of whom 2.13% had a positive screening result, with 771 pregnancies considered at risk of a clinically significant haemoglobinopathy (11). In addition to a prenatal screening programme, the UK also has a newborn blood spot screening programme designed to screen for SCD and thalassaemia (12). Haemoglobinopathy screening programmes are designed to detect carriers and affected individuals at an early stage, enabling prompt management and supporting informed reproductive decisions. This study was carried out in the West Midlands area of England. Within this area, numerous hospitals are considered high risk for haemoglobinopathies, meaning that more than 2% of antenatal bloods received by the laboratories are positive for a haemoglobin variant (10). As a result, all women must be offered a blood test to screen for haemoglobinopathies, regardless of ethnic origin. These screening programmes have the potential to significantly reduce the morbidity and mortality rates associated with these diseases (7). By addressing barriers and implementing targeted educational programmes, healthcare practitioners may improve screening programme involvement and, ultimately, the health outcomes for individuals suffering from specific hereditary disorders, underpinning the importance of these programmes for disease management. Public Perceptions of Haemoglobinopathy Screening There are various obstacles in evaluating the publics’ comprehension of haemoglobinopathy screening. The first step in managing and treating a disease is to identify it through screening. However, the public often lacks knowledge about these conditions, their importance, or the advantages of screening (13). Many factors, such as cultural beliefs, knowledge levels, access to healthcare resources, and the fear that inherited conditions are stigmatised, can affect the decision to get screened. Effective communication techniques must also be used to educate the public about haemoglobinopathies. Providing materials that are readily accessible, easy to comprehend, and feasible for a wider range of audiences enhances the health of individuals with haemoglobinopathies and ultimately increases screening programme participation (7). Current research has consistently demonstrated that public awareness regarding haemoglobinopathies is low, particularly among those who have had no previous contact with health services. Although there is low awareness, the majority are keen to be screened once they are provided with sufficient information, with acceptance of greater than 90% after short community education or health facility-based information (14). This implies that ignorance rather than opposition to screening is usually the main obstruction (15,16). Cultural and religious assumptions play a powerful role in influencing public attitudes towards screening. In some groups, individuals are fearful that a positive result would negatively affect marriage opportunities or lead to exclusion from society. Such assumptions provide the basis for opposition to participation in screening, particularly where this is linked with antenatal or premarital health care (17). Stigma can be associated with obtaining a diagnosis which can sometimes be inaccurately portrayed as a ‘hereditary curse’ or sign of family weakness. Such misconceptions can result in secrecy about family history and impact perceptions of the benefits of screening (18). Communication disruption, linguistic incompatibility, and cultural insensitivity of information can also negatively impact the process (19). Studies have observed that haemoglobinopathy screening rates are higher when healthcare professionals fully explain the purpose and the implications of the tests in clear and respectful language (20,21). Systemic barriers, such as inconsistent application of policy, poor coordination and poor public awareness campaigns also exacerbate the issue. In most cases, the public bases their perceptions on visibility and credibility of health messages from government and healthcare institutions, rather than on individual experiences (22). If haemoglobinopathy screening is not framed as a routine, government-endorsed health intervention, the public will view it as discretionary or evadable (23). In general, perceptions of haemoglobinopathy screening have been impacted by lack of awareness, cultural beliefs, experiences in healthcare, and educational background. While acceptance is usually highest when screening is available and straightforward, stigma, myths, and institutional scepticism can limit broader use (24). Systematic efforts must emphasise health education, culturally responsive communication, and policy-driven integration of screening into routine care to enhance public trust and promote participation. One study demonstrated that healthcare professionals, particularly nurses, are often considered the main source of information for mothers when newborn screening is carried out (25). It is important that this educative role for healthcare professionals is recognised as essential for facilitating the success of screening programmes and emphasising the rationale and significance of this testing. METHODS Aims and Objectives The study aimed to evaluate the public's comprehension of haemoglobinopathy screening. Within the West Midlands region, many hospital Trusts have been identified as ‘high prevalence’ for haemoglobinopathies, meaning that many ladies in this area will have undergone haemoglobinopathy screening if they have had a recent pregnancy. This provides rationale to identify whether the public are aware of this testing and the significance of the findings or whether many patients are unaware that they have consented to this test being carried out. The study was a cross-sectional design using a random sampling method. The study was carried out in the West Midlands region of England, where almost 2% of pregnancies are affected by haemoglobinopathies, resulting in every pregnant mother being tested unless she declines. In this region participants should be aware of haemoglobinopathy screening and the significance of the findings. Participants were recruited amongst the public by approaching individuals in the shopping area of Wolverhampton city centre. All subjects for this study were over the age of 18 and were able to provide informed consent. It was made clear in the participant information sheet that prior expertise or understanding in haemoglobinopathy screening was not required to participate. Data collection took place in June 2024 and occurred through contact with members of the public who then scanned a QR code linked to the participant information sheet, informed consent form and the JISC Online Surveys questionnaire. The questionnaire was developed for this study and contained a mixture of multiple choice, yes/no questions and free text responses (see supplementary information). Participant demographics were also collected as part of the study. All participants completed the questionnaire on their personal device, although a hardcopy survey was available if preferred. A total of 55 participants were recruited. Ethical Approval Ethical approval was sought from the Life Sciences Ethics Committee at the University of Wolverhampton (REC ID: LSEC/2023-24/KD/60). A participant information sheet was provided which explained the objectives and scope of the study. Participants were allowed to freely respond to questions, and they were advised to omit any questions that they did not wish to answer. The participant information sheet explained that participation was voluntary and that all responses were anonymous, meaning individual participants could not be identified. All participants completed an informed consent form which was embedded into the JISC Online Surveys questionnaire. Data analysis Data was analysed using statistical analysis of the quantitative data (e.g. frequency data and percentages as appropriate). To determine statistical significance, non-parametric Mann Whitney U or Kruskal Wallis tests were carried out using IBM-SPSS Statistics version 29. Statistical significance was set as p <0.05. Qualitative data was analysed using thematic analysis according to Braun and Clarke to identify significant themes (26). This analysis included reading and familiarisation of the data, coding, searching for themes, reviewing themes, defining and naming themes, and final analysis. The researchers read the data for familiarity, generated codes to form initial themes, and checked for plausibility. The process was repeated by both researchers, and the final themes were collectively agreed upon to produce the thematic analysis. RESULTS Demographic Information There were 55 respondents who completed the questionnaire. Most participants in the study identified as female n=46 (84%) and only 9 (16%) identified as male. Participants were from a range of different age groups as shown in figure 1 , with the majority of participants being in the 35-39 or 40-44 age groups. Most of the study participants identified as African or African Caribbean (n= 39, 71%) as shown in figure 2 . Whilst 13% of participants (n=7) identified as White European, only 7% of participants (n=4) identified with an ethnic origin as the Indian sub-continent. This is not reflective of the population make up within the West Midlands area and is a recognised limitation of the study. Quantitative Data Analysis Participants were asked several questions which had ‘yes’, ‘no’ or ‘don’t know’ options, as shown in figure 3 . When asked to self-assess their understanding of haemoglobinopathies and why screening was important, 29 participants (53%) felt that they had a good understanding, whilst a further 18 participants (33%) felt that they did not and a further 8 participants (14%) did not know ( figure 3A ). Most participants (n= 36, 65%) felt that they understood the purpose of screening for haemoglobinopathies, whilst 13 participants (24%) felt that they did not and a further 6 participants (11%) did not know ( figure 3B ). The majority of participants (n=33, 60%) felt that they were not adequately informed about the process of haemoglobinopathy screening, with only 17 (31%) of participants feeling that they were adequately informed ( figure 3C ). This is an interesting finding considering that 33 participants (60%) reported that they or their partner had been pregnant in the last 10 years and were therefore likely to have been tested for haemoglobinopathies if they are resident in the West Midlands area. Finally, participants reported being willing to participate in community events about haemoglobinopathy screening, with 58% (n= 32) stating they would be happy to do this. Only 5 participants (9%) were not willing to participate in community events and 18 participants (33%) were unsure whether they would participate ( figure 3D ). Participants were also asked how confident they felt in their knowledge of haemoglobinopathy screening. Only 43 responses were received to this question, with 12 respondents (22%) opting to omit their response ( figure 4 ). Only 11 participants reported that they felt confident or quite confident in their knowledge of haemoglobinopathy screening, representing 20% of all participants. There were 17 participants who reported feeling not very confident or not at all confident (31%) and a further 15 participants (27%) chose the ‘neither confident nor unconfident’ response. This demonstrates that many participants in the study lacked confidence in their knowledge of haemoglobinopathies, despite 60% of participants reporting that they or their partner have been pregnant in the last 10 years and therefore were likely to have been tested for the condition. The high proportion of participants choosing the ‘neither confident nor unconfident’ and choosing to omit this question likely reflects a lack of confidence in their own knowledge, which will be discussed further in the discussion. A series of Kruskal Wallis tests were performed to identify whether a statistically significant difference existed between several different factors. There was no statistically significant difference between age and whether the participant knew whether they had been tested for a haemoglobinopathy ( p =0.509). There was no statistically significant association between age and whether the participant believed that they have a good understanding of what haemoglobinopathies are and why testing for them is important ( p =0.353). There was no statistically significant difference between ethnic origin and whether the participant was aware that they had been tested for a haemoglobinopathy ( p =0.324). This was also the case for ethnicity and whether the participant was aware of what haemoglobinopathies are and why screening is important ( p =0.795). A Mann Whitney U test was performed to identify whether there was an association between gender and whether participants or their partners had ever been tested for a haemoglobinopathy and found no significant difference ( p =0.377). A non-statistically significant difference was also found for the association between gender and self-perceived understanding of haemoglobinopathy screening and why it is important ( p =0.990). This was reflected when considering a history of pregnancy in the last ten years and understanding of haemoglobinopathy screening and why it is important ( p =0.819). There was a non-statistically significant difference between pregnancy in the last ten years and knowledge of whether the participant or their partner had been tested for a haemoglobinopathy ( p =0.115). This non-statistically significant difference was found between parental status and whether the participant or their partner had ever been tested for a haemoglobinopathy ( p =0.104). Finally, this was also found when considering parental status and whether the participant believed they had a good understanding of haemoglobinopathy screening ( p =0.720). This series of non-statistically significant differences between the participants suggests that, although the study demographics suggest that significant proportion of the participants would have been tested for a haemoglobinopathy, being tested does not result in an increased understanding of haemoglobinopathy screening results. Qualitative Analysis A thematic analysis was carried out for the free-text responses according to Braun and Clarke (26). The thematic analysis has been summarised into a diagram for ease of interpretation, but is underpinned by several illustrative quotes, which have been outlined below. Figure 5 demonstrates the thematic analysis for barriers to haemoglobinopathy screening that were identified by the participants. Poor awareness Participants considered their experiences of haemoglobinopathy screening and despite experience of this, an understanding of the implications of this was lacking suggesting a poor understanding of the condition. One of the participants reported: “My partner has thalassemia, but it doesn’t seem to impact him much - he has dodgy red blood cells that impairs his immune system and that’s all I know to be honest.” This suggests a poor awareness of thalassaemia. The phrase "dodgy red blood cells" points to a basic understanding of the disorder, implying that although some awareness exists, a thorough understanding is lacking. However, some participants demonstrated a much greater understanding and demonstrated the importance of identifying haemoglobinopathy carrier status for family planning purposes: “I knew since I was 12 years old that I was AS. Before starting any relationships, I would ask my partner his genotype. Before marriage, we went for screening to make sure there were no errors in our status.” This shows a good understanding of the significance of the condition and the implications of this for future life decisions and the importance of this when deciding to participate in antenatal screening tests. Stigma and fear Some of the participants highlighted fear and potential stigma of screening may prevent people from wanting to be tested. Participants also drew attention to the importance of confidentiality in diagnostic testing and wanting assurances that this information would not be shared without appropriate permissions. One participant stated: “Fear of results so not willing to participate in testing. Ignorance to conditions and how it affects people.” This answer suggests that some people might not recognise the importance of early identification or might not understand the significance of this for the future. This statement suggests that fear of a positive diagnosis and a lack of knowledge about haemoglobinopathies are significant barriers to screening. If participants are concerned about the long-term consequences of screening, such as insurance implications, the impact on family planning and choosing a life partner then this may result in a reluctance to come forward for testing as part of routine antenatal screening. Consequences of Screening Participants identified that there may be a reluctance to participate in screening programmes due to concerns about the consequences of testing, such as the impact of the results for family planning decisions and implications in other aspects of life, such as obtaining health or life insurances. One participant explained that there were concerns about how the data would be used and who would have access to it as well as how accurate the test results would be: “Understanding what the conditions are, the accuracy of the test, confidentiality of results, and potential stigma.” This participant demonstrated the importance of understanding in a successful screening programme, whilst focusing upon the wider implications of testing and how their data would be used. Cultural and language barriers and community involvement Language barriers were highlighted by the participants who suggested the use of different languages to educate the public about haemoglobinopathy screening. This highlighted the importance of providing multilingual resources. Participants stated: “More literature published in different languages- mobile clinics, talks in local communities - places of worship, schools, libraries etc. and TV advertisements”. “Create more public engagement through social/community forums like churches, mosques and institutions.” This suggests that promoting the creation and distribution of instructional materials in several languages is crucial to reaching non-English speaking populations. Wherever diverse groups assemble, such as local community centres, places of worship, educational institutions, and libraries, these products should be available. Participants were asked how public healthcare providers can strengthen their education and awareness campaigns to increase the general publics’ comprehension of haemoglobinopathy screening, especially among at-risk groups. The thematic analysis of the responses to this question are shown in figure 6 . Social media and media campaigns Many participants identified the same key aspects, including radio and television, social media campaigns, school healthcare education initiatives and targeted health workshops as well as increasing community involvement. This shows that the majority of participants were aware of the importance of the multi-channel approach, which includes focused efforts in community settings, businesses, and schools in addition to platforms like social media and conventional media for successfully reaching individuals. Many participants stated public healthcare providers could strengthen education and awareness campaigns by tailoring messages to different languages and cultures, partnering with community leaders, using multiple media channels, providing clear and simple information, offering community workshops, and integrating screening information into broader health programmes. Targeted health campaigns Many participants indicated that healthcare providers can strengthen their education and awareness campaigns to increase the general publics’ comprehension of haemoglobinopathy screening. This was evident under the theme ‘targeted health campaigns’. One participant commented: “Better awareness and information given at pregnancy booking and family planning clinics”. This suggests that during patient appointments, healthcare professionals should promote screening more comprehensively, ensuring that individuals have a good level of understanding of the condition and why screening is important. Patients should also be fully informed when receiving their screening results to ensure they know what has been tested and what the results indicate. Participants also drew attention to the perceived inequalities that are associated with haemoglobinopathies when compared to other health conditions. One participant stated: “If this issue impacted white people, everyone would be aware” The comment suggests that the participant felt that health conditions impacting non-white populations are often given less consideration, resources, or immediacy compared to problems that impact white individuals. Engaging young people and community initiatives Many participants felt that educational systems were a good opportunity to disseminate information to ensure that young people had a better awareness of the condition and why screening was important. One of the participants reported: “Talks in schools, incorporated into educational curriculum, public awareness advertising.” These programs are thought to be an efficient means of raising awareness and interacting with communities, especially those that may be more difficult to engage through the media or healthcare settings. The use of these platforms implies support for community-based and culturally sensitive methods of health education. This method of educating the public is particularly important for engaging young people who may have concerns about the reliability of information that is shared with them through other channels. Healthcare Professional Education Whilst education of patients and equipping them with the required information was considered important, many participants felt that it was the responsibility of healthcare professionals to share this information in an accessible way. As patients often rely on healthcare professionals or online resources for information, it is essential to ensure that healthcare professionals are well prepared to explain complex scientific concepts in an accessible way to the lay person. One participant stated that to increase the general publics’ understanding of a concept it was essential to provide: “More literature published in different languages, mobile clinics, talks in local communities e.g. places of worship, schools, libraries etc. TV advertisements. Educating midwives and those who may naturally deliver information.” If healthcare professionals have a good understanding of these concepts, they also need the ability to express themselves clearly and succinctly and direct patients to appropriate resources with scientifically accurate information. Increasing funding Many participants commented that there should be additional support services available for individuals and families that are impacted by haemoglobinopathies. Many participants were in favour of genetic counselling, psychological support, increased education for patients, financial assistance as well as access to support groups and specialised healthcare services. The participants’ responses indicated a clear understanding of the broad spectrum of support services needed by individuals and families affected by haemoglobinopathies. Whilst financial assistance was identified as important by several participants, the importance of free screening was also highlighted to ensure that appropriate family planning decisions can be made. DISCUSSION The aim of this study was to evaluate the publics’ comprehension of haemoglobinopathy screening in the West Midlands region of England. Participants demonstrated variable levels of knowledge regarding haemoglobinopathy screening. The results are in line with a previous study which considered pre-marital screening for haemoglobinopathies in Saudi Arabia and demonstrated varying degrees of knowledge amongst the participants (27). This previous study explored pre-marital screening rather than antenatal screening but also supported the use of media sources to provide relevant information. However, the participants who discussed pre-marital screening were university students studying health related courses and the authors demonstrated a strong correlation between level of education and understanding of haemoglobinopathy screening results (27). It is possible that the students’ educational background resulted in an increased understanding of haemoglobinopathy screening when compared to the general public. In the present study, 47% of participants showed a lack of understanding of what haemoglobinopathies are and why screening for them is important. Only 20% of respondents stated that they felt ‘very confident’ or ‘quite confident’ in their understanding of haemoglobinopathy screening results. These findings are reflective of those seen in another Saudi Arabian study involving university students who reported a lack of understanding of pre-marital screening with only 53.9% of participants having heard of thalassaemia (28). This suggests that public knowledge can be improved further by encouraging health awareness programmes in the community. Other important sources of information are social media, an informative and approachable healthcare professional, television and radio and institutional involvement (29). Lectures and traditional academic sessions were considered less favourable sources of information, suggesting that this format would not be accessible for the public. There is a need for targeted, readily accessible, culturally competent training programs to ensure that at risk populations are better prepared to take charge of their own health management (30). Participants demonstrated an awareness that managing haemoglobinopathies requires comprehensive and coordinated support that addresses not just the physical aspects of the condition but also the emotional, financial, and social challenges that come with it (31). Providing education in school or university on the importance of haemoglobinopathy screening along with social media initiatives could be beneficial in increasing screening uptake. In a recent study, participants identified the internet, family and friends as sources of information regarding pre-marital screening in Saudi Arabia, but there was no discussion around the reliability of these information sources (32). Family and friends have been acknowledged as a source of haemoglobinopathy information in another study, particularly those who are impacted by a clinical diagnosis (33). Participants expressed a preference for information regarding haemoglobinopathy screening to be disseminated via media channels and social media platforms. This may result from individuals utilising social media platforms regularly (often daily) and the ease of access to this information. Although social media platforms have shown benefits in health promotion, there is also the potential for incorrect or misleading information to be shared, and this has the potential to negatively impact health screening choices (34). Social media has also been shown to be a potentially harmful source of information for young people with evidence of negative health behaviours being shared through this platform (35). The quantitative data analysis within this study demonstrated a series of non-statistically significant differences between the participants regardless of age, gender and ethnic origin. This suggests that, although 60% of the participants (or their partners) would likely have been tested for a haemoglobinopathy due to a recent pregnancy, being tested does not result in an increased understanding of haemoglobinopathy testing. This finding suggests that healthcare professionals are not effectively communicating the results of these screening tests to their patients or that perhaps healthcare professionals do not have sufficient understanding of the results to allow them to communicate the significance effectively. A recent study identified that providing results and an indicative reference range for laboratory data is not effective and that patients should be provided with tailored information (36). Furthermore, patients have expressed a preference for more information following blood test results, particularly when further follow up is required (37). However, clinicians have also reported that communication of normal results is unnecessary and that complex cases or those requiring follow up need interactive methods of communication with patients (37). For haemoglobinopathy screening, it is possible that healthcare professionals do not accurately communicate normal results to patients as they perceive this to be of lesser importance, which has resulted in a poor understanding of this screening in the study participants. This lack of understanding of haemoglobinopathy screening results was further evidenced by the high proportion of participants choosing the ‘neither confident nor unconfident’ response (27%) or choosing to omit the question (22%) when asked how confident they felt in their understanding of haemoglobinopathy screening results. In response to this question, only 20% of participants stated that they felt quite confident or very confident. Choosing a neutral opinion or omitting the question is often used in response to unfamiliar terms, considering it to be an easier option (38). This likely reflects a lack of confidence in their own knowledge which is possibly related to a lack of information from healthcare professionals regarding the importance of screening. However, the inclusion of a neutral option can encourage satisficing where participants may lose motivation or the ability to respond in a survey questionnaire, leading to a desire to choose an option that would be considered acceptable and not demonstrate ignorance (39). The lack of understanding of haemoglobinopathy screening could result from several factors, including a perception of insufficient information, presence of language barriers, inaccessibility of complex medical terminology and poor explanations by healthcare professionals. Enhancing communication strategies is important, ensuring that communication methods are suitable for those patients for whom English is not their first language. Through providing multi-lingual healthcare information, and cultural sensitivity, information can be provided that is accessible to all patient groups (40). This can be achieved by using visual aids and simplified language as appropriate. In this study, 60% of participants have been pregnant or their partner has been pregnant in the last ten years, yet a lack of understanding of what haemoglobinopathy screening is and why it is important was evident. Participants were also asked how to address any stigma or fear associated with haemoglobinopathy screening as this is a potential barrier to participation. Most participants responded that there should be educational strategies to increase public awareness, counselling, and that services should be accessible and convenient for patients. By linking screening to existing antenatal care, the programme aims to minimise inconvenience (10). Limitations of the Study One of the key limitations of this study is that the sample was not representative of the ethnic diversity of the West Midlands population. Recent regional demographic data indicates that 60.6% of Wolverhampton residents identify as White British, and 9.3% identifying as Black African or African Caribbean (41). In this study, however, 71% of participants identified as African or African Caribbean, over-representing this population compared to the wider society. The findings are therefore likely to reflect most strongly on the views, knowledge levels, and attitudes of that community and have limited generalisability to the wider regional population. The study should be replicated with a larger group of participants which more closely represents the ethnic diversity in this area of the UK. The participants were predominantly female (84%), which is unusual given the random sampling method that was used in the study. One possible explanation for this is that female participants were more easily recruited due to a perception that the study was more relevant due to discussion of antenatal and postnatal screening. This study was carried out in the West Midlands region of the UK, where there is a high prevalence of haemoglobinopathies. It is important to note that this data represents only part of the national picture and there are other areas of the UK, such as Greater London and the North of England which are also considered high prevalence for haemoglobinopathies (42). Whilst this study represents valuable data from a high prevalence area, the study would need to be expanded to consider whether there is transferability to other high prevalence regions of the UK. One further limitation of this study is the use of self-perceived understanding rather than an objective assessment of participants' factual knowledge of haemoglobinopathy screening (43). The self-reported nature of understanding is inherently subjective and susceptible to social desirability bias and overestimation, so that participants reporting good awareness may not necessarily possess accurate or sufficient knowledge to support truly informed decision-making (44). Conversely, numerous haemoglobinopathy screening studies have employed objective assessment tools, such as scored questionnaires within knowledge-attitude-practice (KAP) frameworks, facilitating direct evaluation of factual comprehension and more precise detection of knowledge deficiencies (45-47). This study gauged participants' confidence and perceived awareness through self-perception and did not verify if their perceived understanding was correct. In the future, integration of subjective self-measurements with well-established objective knowledge measures could help thoroughly assess public understanding and improve education and health policies. Given the limited sample size (n=55), the generalisability of these findings is limited (48). With a small sample size, the impact of a single outlier is greater which can have a significant impact on overall findings (49). This in turn leads to a reduction in the reliability of subgroup analysis, such as demographic information. For example, analysis broken down by age, ethnicity or educational attainment may consist of too few individuals in each subgroup to generate reliable, statistically significant findings (50). Repeating the study with a larger sample would be beneficial to reduce random error, narrow the width of the confidence intervals, increase statistical power, and ensure better precision and dependability of estimates. These changes will lead to an increase in both the accuracy of the findings and generalisability (51). Recommendations Although there are recognised limitations of the study, there are several recommendations that are required to improve public understanding of haemoglobinopathy screening. The public lack an understanding of what haemoglobinopathies are and why it is important to screen for them. Strategies are required to address this through targeted public health campaigns. Participants felt that social media and registered healthcare professionals, along with community engagement through schools and religious centres were appropriate methods to share health related information. Strategies are required to engage all areas of the community through reducing racial disparities, language barriers and challenges to accessing health information. Information should be provided in an accessible way that is relevant and understandable to the layperson. It is important that this communication takes place in an appropriate format and language barriers are suitably addressed. These steps are essential to prevent stigma and fear associated with screening tests. Participants felt that healthcare professionals were an essential source of information regarding health-related conditions, but that healthcare professionals required further education to allow them to accurately communicate the importance of screening and to help patients to comprehend the significance of both normal and abnormal results. Through supporting education of healthcare professionals on the importance of complex laboratory tests, patients can gain a better understanding of haemoglobinopathies and why screening for them is essential for family planning decisions and early diagnostic interventions. Healthcare professionals have a responsibility to ensure that patients are fully aware of the tests which are being performed and obtain informed consent for this testing. Despite 60% of participants stating that they or their partner had been pregnant in the last 10 years, only 31% of participants felt they had been adequately informed about haemoglobinopathy screening. In the West Midlands area, many NHS Trusts are considered high prevalence for haemoglobinopathies, meaning screening is performed unless a patient opts out of the testing. This data suggests that patients may not have an adequate understanding of the screening tests that they are consenting to, an issue which has been previously identified with other forms of screening (52,53). CONCLUSION This study has demonstrated a perceived lack of understanding of haemoglobinopathy screening and why this is important for family planning and for early diagnostic and treatment interventions. Addressing this lack of understanding can be achieved through social media, educational institutions, word of mouth within communities, religious institutions, and healthcare professionals. Additionally, it is important to recognise and address the challenges and barriers that exist, including racial inequalities, language barriers, fear and stigma associated with testing and limited access to health information. Healthcare professionals have a responsibility to ensure that patients are aware of the screening tests that will be performed and why these are important, as patients can only effectively give consent for a procedure if they are fully aware of what is involved. This requires the ability to communicate complex ideas to the layperson and to ensure that information has been understood by the recipient. It is likely that further healthcare professional educational strategies and interventions will be required to achieve this. Comprehensive strategies are required to educate the general population about haemoglobinopathy screening and why this is an important public health policy. Abbreviations FOQ: Family Origin Questionnaire Hb: Haemoglobin KAP: Knowledge, attitude and practice NHS: National Health Service PND: Prenatal diagnosis SCD: Sickle Cell Disease UK: United Kingdom Declarations Ethical approval and consent to participate: This study was conducted according to the Declaration of Helsinki. Ethical approval for this study was obtained from the Life Sciences Ethics Committee at the University of Wolverhampton (REC ID: LSEC/2023-24/KD/60). All participants read a participant information sheet and completed a consent form prior to participation. Consent for Publication: Not applicable. Data Availability: The data set supporting the conclusions of this article is included within the article (and its additional files). Competing Interests: The authors declare that they have no competing interests. Funding This study received no internal or external funding. Author Contributions: HS and KD participated in the design, interpretation and analysis of the data and co-authored and reviewed the manuscript. HS carried out the data collection and both HS and KD carried out the data analysis. Both authors approved the final version. Acknowledgements: The data presented in this article forms part of a Masters dissertation submission for the first author (HS). We would like to express our gratitude to each volunteer who assisted us in conducting this research. The fact that they were willing to contribute their time, thoughts, and experiences made this study possible. Our sincere appreciation goes out to them for the insightful comments they provided to the questionnaire and the written feedback, which assisted us in gaining a deeper understanding of public awareness around haemoglobinopathy screening. References Angastiniotis M, Lobitz S. Thalassemias: An Overview. IJNS 2019 -03-20;5(1):1–11. Moore GW, Knight G, Blann AD. Haematology. 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Supplementary Files assessingpublicunderstandingofhaemoglobinopathyscreeningrawdata.xlsx Completedquestionnaire.docx Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 23 Mar, 2026 Reviews received at journal 22 Mar, 2026 Reviews received at journal 18 Mar, 2026 Reviews received at journal 15 Mar, 2026 Reviews received at journal 15 Mar, 2026 Reviewers agreed at journal 13 Mar, 2026 Reviewers agreed at journal 13 Mar, 2026 Reviewers agreed at journal 10 Mar, 2026 Reviewers agreed at journal 09 Mar, 2026 Reviewers agreed at journal 07 Mar, 2026 Reviewers invited by journal 05 Mar, 2026 Editor assigned by journal 04 Mar, 2026 Editor invited by journal 11 Feb, 2026 Submission checks completed at journal 11 Feb, 2026 First submitted to journal 11 Feb, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8831037","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":603170319,"identity":"d8179cb8-0197-437e-b5c5-e8a9ef993c46","order_by":0,"name":"Halima Oyindamola Suleiman","email":"","orcid":"","institution":"Scarborough General Hospital","correspondingAuthor":false,"prefix":"","firstName":"Halima","middleName":"Oyindamola","lastName":"Suleiman","suffix":""},{"id":603170320,"identity":"5b0ab509-fec2-42c6-aeaf-43143f193c63","order_by":1,"name":"Kathryn Dudley","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA4UlEQVRIiWNgGAWjYBACCQYGAwaeAgYGfvYGxgMQMTZitBgwMEj2HGAgUYvBjQQitUg2MG+TeGNgk9hw843BYR4GO3kGibQEvFqkGdjKJOcYpCU2zs4BaUk2bJBIO4BXixwDj5k0j8HhxGbp3A0HZzAwJzBIpDcQo+V/YpvkWZCWesJapCFaDiT2SPBuOPCB4TBQCwGHSTazFVvOMUg2nsGT/+HAB4Pjhm08zxLwapE43rzxxpsKO9n9x48lPkioqJbnZ08zwKuFgRlCOULcb0AwVhDAnliFo2AUjIJRMAIBAAJbQDSsBYqmAAAAAElFTkSuQmCC","orcid":"","institution":"University of Wolverhampton","correspondingAuthor":true,"prefix":"","firstName":"Kathryn","middleName":"","lastName":"Dudley","suffix":""}],"badges":[],"createdAt":"2026-02-09 13:38:22","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8831037/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8831037/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":104374922,"identity":"23dd34e6-f1ba-413b-9136-b6edaab16ca1","added_by":"auto","created_at":"2026-03-11 06:11:19","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":40735,"visible":true,"origin":"","legend":"\u003cp\u003eThis demonstrates the age ranges and relative proportions of the participants. The majority of participants represent the 35-39 and 40-44 age groups, with only two participants representing the 50+ age group.\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-8831037/v1/34e396dcd9f29647434de526.png"},{"id":104374890,"identity":"cd515c58-d42b-4706-8a51-b59456736a1b","added_by":"auto","created_at":"2026-03-11 06:11:18","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":34473,"visible":true,"origin":"","legend":"\u003cp\u003eEthnic origin of the study participants, which demonstrates that most respondents were African or African/Caribbean. This is not in keeping with the general population of the West Midlands area.\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-8831037/v1/38b885d9267a79742676387d.png"},{"id":104374888,"identity":"f714a345-e404-4db7-ab4d-771a8f895c96","added_by":"auto","created_at":"2026-03-11 06:11:18","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":298507,"visible":true,"origin":"","legend":"\u003cp\u003eParticipant responses to a series of questions with options for ‘yes’, ‘no’ or ‘don’t know’. The percentage of participants providing each response is shown on the figure, with 55 respondents in total.\u003c/p\u003e","description":"","filename":"3.png","url":"https://assets-eu.researchsquare.com/files/rs-8831037/v1/13e2b700817e006e8edf4cd9.png"},{"id":104374852,"identity":"ea806975-da23-439f-90ec-43d80560e79c","added_by":"auto","created_at":"2026-03-11 06:11:11","extension":"png","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":34206,"visible":true,"origin":"","legend":"\u003cp\u003eParticipant responses to their confidence in their own knowledge of haemoglobinopathy screening, with a significant proportion (22%) of participants choosing to omit their response to this question.\u003c/p\u003e","description":"","filename":"4.png","url":"https://assets-eu.researchsquare.com/files/rs-8831037/v1/94a159f2d8ad1a0997e9159e.png"},{"id":104374874,"identity":"07dbeab5-b89d-404f-9e50-8de2daa8a526","added_by":"auto","created_at":"2026-03-11 06:11:15","extension":"png","order_by":5,"title":"Figure 5","display":"","copyAsset":false,"role":"figure","size":133216,"visible":true,"origin":"","legend":"\u003cp\u003eThematic analysis of participant responses when identifying the barriers to accessing haemoglobinopathy screening.\u003c/p\u003e","description":"","filename":"5.png","url":"https://assets-eu.researchsquare.com/files/rs-8831037/v1/73e6bcdd0462c9a46ae7111f.png"},{"id":104374854,"identity":"39cdb214-61ed-4c00-a5dc-d23d9d1d43fb","added_by":"auto","created_at":"2026-03-11 06:11:12","extension":"png","order_by":6,"title":"Figure 6","display":"","copyAsset":false,"role":"figure","size":156800,"visible":true,"origin":"","legend":"\u003cp\u003eThematic analysis of participant responses when considering ways to strengthen education campaigns to increase public awareness and understanding of the conditions.\u003c/p\u003e","description":"","filename":"6.png","url":"https://assets-eu.researchsquare.com/files/rs-8831037/v1/d9a09a30b55fff72b4d6dc5c.png"},{"id":104374850,"identity":"46939806-678e-45bf-a715-93a6bf36f6ff","added_by":"auto","created_at":"2026-03-11 06:11:11","extension":"xlsx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":27324,"visible":true,"origin":"","legend":"","description":"","filename":"assessingpublicunderstandingofhaemoglobinopathyscreeningrawdata.xlsx","url":"https://assets-eu.researchsquare.com/files/rs-8831037/v1/eb35ec0029712343f3b2d655.xlsx"},{"id":104374851,"identity":"9ee81fce-4d8f-4fd4-a5b6-dfae16ecb35b","added_by":"auto","created_at":"2026-03-11 06:11:11","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":75683,"visible":true,"origin":"","legend":"","description":"","filename":"Completedquestionnaire.docx","url":"https://assets-eu.researchsquare.com/files/rs-8831037/v1/b79d2887f21a95a1b994f05a.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Assessing the Public Understanding of Haemoglobinopathy Screening in the United Kingdom","fulltext":[{"header":"BACKGROUND","content":"\u003cp\u003eHaemoglobin (Hb) is a tetrameric protein made up of two pairs of opposing globin protein chains. An oxygen-binding haem group located in the middle of each globin chain preserves and delivers oxygen to tissues. Located at 16p13.3 in the telomeric region of human chromosome 16, the α-globin gene cluster is made up of the Hb subunit alpha A\u003csub\u003e1\u003c/sub\u003e gene (HBA\u003csub\u003e1\u003c/sub\u003e/α\u003csub\u003e1\u003c/sub\u003e) and the Hb subunit alpha A\u003csub\u003e2\u003c/sub\u003e gene (HBA\u003csub\u003e2\u003c/sub\u003e/α\u003csub\u003e2\u003c/sub\u003e). The α\u003csub\u003e1\u003c/sub\u003e- and α\u003csub\u003e2\u003c/sub\u003e-globin genes are similar in their coding regions, and each consist of three exons and two introns. The β-globin proteins are encoded by the Hb subunit beta gene (HBB) located on human chromosome 11p15.4 in a gene cluster that consists of four other globin genes; the embryonic ε-globin gene, foetal γ-globin gene 1 and 2 and δ-globin gene (1).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAdult haemoglobin consists of two subtypes: HbA\u003csub\u003e1\u003c/sub\u003e and HbA\u003csub\u003e2\u003c/sub\u003e. Most adult haemoglobin is in the form of Hb A\u003csub\u003e1\u003c/sub\u003e (α\u003csub\u003e2\u003c/sub\u003e β\u003csub\u003e2\u003c/sub\u003e), which contains two alpha chains and two beta chains. This haemoglobin A\u003csub\u003e1\u003c/sub\u003e constitutes 95-97% of the total haemoglobin. The minor adult haemoglobin species is Hb A\u003csub\u003e2\u003c/sub\u003e (α\u003csub\u003e2\u003c/sub\u003e δ\u003csub\u003e2\u003c/sub\u003e) which consists of two alpha chains and two delta chains. Hb A\u003csub\u003e2\u003c/sub\u003e forms up to 3.5% of total haemoglobin. Foetal haemoglobin, Hb F (α\u003csub\u003e2\u003c/sub\u003eγ\u003csub\u003e2\u003c/sub\u003e) is present normally in newborn and early foetal life. From around six months of age, 90% of foetal haemoglobin is replaced by adult haemoglobin (HbA\u003csub\u003e1\u003c/sub\u003e). Hb F consists of two alpha chains and two gamma chains. A small proportion of Hb F persists throughout adulthood, with up to 2% considered normal. Deoxyribonucleic acid (DNA) variations can lead to structural alterations in haemoglobin such as Sickle Cell Disease (SCD) or quantitative differences in synthesis of globin chains (e.g. α- or β-globin) known as thalassaemia.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eClinical Significance of Haemoglobinopathies\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHaemoglobinopathies refer to a class of autosomal recessive haemolytic anaemias which affect the structure, function and production of haemoglobin. There are two different types of haemoglobinopathy which can arise from qualitative, monobasic changes in the DNA and subsequently in the globin chain structure, such as HbS, HbD, HbE and HbC or quantitative changes caused by reduced or absent globin chain synthesis as seen in α or β-thalassaemia. To date, over 1800 different variants that have been identified and some of these are clinically silent, whilst others have a severe clinical phenotype and significantly impact the quality of life of affected individuals (2). Haemoglobinopathies are widespread throughout the world, but SCD is most common across central Africa and the Caribbean, whilst thalassaemias are more prevalent in Southern Europe, North Africa and South and Southeast Asia. Population migration has resulted in haemoglobinopathies becoming more widespread and many countries have adopted haemoglobinopathy screening programmes. Approximately 7% of the worldwide population are carriers for haemoglobinopathies, presenting a significant challenge for healthcare services (3).\u003c/p\u003e\n\u003cp\u003eGenetic inheritance of haemoglobinopathies is complex, but individuals are generally considered to be homozygous or heterozygous for a specific condition. For example, an individual who carries two copies of a β-globin chain mutation such as HbS would be considered homozygous for the condition and present a clinically significant phenotype. If an individual has only one copy of the mutated gene and one normal gene, they are heterozygous and usually do not display any, or possibly only very mild, clinical symptoms. Haemoglobinopathy diagnosis is further complicated by compound heterozygosity, which results from the inheritance of one different mutated gene from each parent. For example, a HbS mutation inherited from one parent and a HbC mutation inherited from the other which leads to a clinically significant condition known as HbSC disease. The presence of malarial parasite \u003cem\u003ePlasmodium falciparum\u003c/em\u003e has acted as a specific trigger in promoting the prevalence of Haemoglobin S and thalassaemia as carrier status for these haemoglobinopathies is associated with a protective effect from malaria. This explains why some ethnic groups, such as those from Southern Turkey, Central India, Mediterranean regions, the Middle East, Asia, and sub-Saharan Africa, have a greater prevalence of haemoglobinopathies (1,4).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eScreening for Haemoglobinopathies Worldwide\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMore than 330,000 affected babies are born each year worldwide, primarily with thalassaemia (17%) and SCD (83%) (5). To detect carriers and determine the likelihood of delivering significantly afflicted offspring haemoglobinopathy screening should be implemented and screening programmes are in place in many countries. By providing robust antenatal screening, genetic counselling and other strategies can be employed to reduce the incidence of individuals being born with clinically significant conditions (6). The incidence of haemoglobinopathies, variation in DNA, and cost efficacy are the primary criteria that influence the choice of a specific screening approach. In areas with high incidence, mass screening programmes that focus on individuals at various life phases, such as teenagers, women and men of reproductive age, or men who are partners with female carriers have been implemented (premarital, pre-conceptional, or prenatal screening). Cascade screening, or the screening of relatives is encouraged in areas with very little or high consanguinity rates (7). These screening programmes should ensure extensive outreach initiatives, consider social, cultural, and ethical issues of the population, provide thorough and prompt counselling to at-risk individuals or couples, and offer prenatal diagnosis (PND) to ensure maximum compliance and benefit (8). There are population screening programmes established for haemoglobinopathies on every continent in the world, covering both endemic and nonendemic regions (9).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eScreening for Haemoglobinopathies in the United Kingdom (U.K.)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eDue to population migration from endemic locations, haemoglobinopathies are now found across Europe, including in the UK. \u0026nbsp;As a result, in 2006, an antenatal screening programme for haemoglobinopathies in England was introduced to offer screening to all pregnant women by 10 weeks gestation (10). Key performance indicators (KPI) of the screening programme require completion of the Family Origin Questionnaire (FOQ), promptness in scheduling screening tests, and prompt PND offer to women who are deemed to be at risk. Recent data for England screened 616,543 pregnant patients, of whom 2.13% had a positive screening result, with 771 pregnancies considered at risk of a clinically significant haemoglobinopathy (11). In addition to a prenatal screening programme, the UK also has a newborn blood spot screening programme designed to screen for SCD and thalassaemia (12).\u003c/p\u003e\n\u003cp\u003eHaemoglobinopathy screening programmes are designed to detect carriers and affected individuals at an early stage, enabling prompt management and supporting informed reproductive decisions. This study was carried out in the West Midlands area of England. Within this area, numerous hospitals are considered high risk for haemoglobinopathies, meaning that more than 2% of antenatal bloods received by the laboratories are positive for a haemoglobin variant (10). As a result, all women must be offered a blood test to screen for haemoglobinopathies, regardless of ethnic origin. These screening programmes have the potential to significantly reduce the morbidity and mortality rates associated with these diseases (7). By addressing barriers and implementing targeted educational programmes, healthcare practitioners may improve screening programme involvement and, ultimately, the health outcomes for individuals suffering from specific hereditary disorders, underpinning the importance of these programmes for disease management.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePublic Perceptions of Haemoglobinopathy Screening\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThere are various obstacles in evaluating the publics’ comprehension of haemoglobinopathy screening. The first step in managing and treating a disease is to identify it through screening. However, the public often lacks knowledge about these conditions, their importance, or the advantages of screening (13). Many factors, such as cultural beliefs, knowledge levels, access to healthcare resources, and the fear that inherited conditions are stigmatised, can affect the decision to get screened. Effective communication techniques must also be used to educate the public about haemoglobinopathies. Providing materials that are readily accessible, easy to comprehend, and feasible for a wider range of audiences enhances the health of individuals with haemoglobinopathies and ultimately increases screening programme participation (7).\u003c/p\u003e\n\u003cp\u003eCurrent research has consistently demonstrated that public awareness regarding haemoglobinopathies is low, particularly among those who have had no previous contact with health services. Although there is low awareness, the majority are keen to be screened once they are provided with sufficient information, with acceptance of greater than 90% after short community education or health facility-based information (14). This implies that ignorance rather than opposition to screening is usually the main obstruction (15,16). Cultural and religious assumptions play a powerful role in influencing public attitudes towards screening. In some groups, individuals are fearful that a positive result would negatively affect marriage opportunities or lead to exclusion from society. Such assumptions provide the basis for opposition to participation in screening, particularly where this is linked with antenatal or premarital health care (17). Stigma can be associated with obtaining a diagnosis which can sometimes be inaccurately portrayed as a ‘hereditary curse’ or sign of family weakness. Such misconceptions can result in secrecy about family history and impact perceptions of the benefits of screening (18). Communication disruption, linguistic incompatibility, and cultural insensitivity of information can also negatively impact the process (19).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eStudies have observed that haemoglobinopathy screening rates are higher when healthcare professionals fully explain the purpose and the implications of the tests in clear and respectful language (20,21). Systemic barriers, such as inconsistent application of policy, poor coordination and poor public awareness campaigns also exacerbate the issue. In most cases, the public bases their perceptions on visibility and credibility of health messages from government and healthcare institutions, rather than on individual experiences (22). If haemoglobinopathy screening is not framed as a routine, government-endorsed health intervention, the public will view it as discretionary or evadable (23). In general, perceptions of haemoglobinopathy screening have been impacted by lack of awareness, cultural beliefs, experiences in healthcare, and educational background. While acceptance is usually highest when screening is available and straightforward, stigma, myths, and institutional scepticism can limit broader use (24). Systematic efforts must emphasise health education, culturally responsive communication, and policy-driven integration of screening into routine care to enhance public trust and promote participation. One study demonstrated that healthcare professionals, particularly nurses, are often considered the main source of information for mothers when newborn screening is carried out (25). It is important that this educative role for healthcare professionals is recognised as essential for facilitating the success of screening programmes and emphasising the rationale and significance of this testing.\u0026nbsp;\u003c/p\u003e"},{"header":"METHODS","content":"\u003cp\u003e\u003cem\u003eAims and Objectives\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe study aimed to evaluate the public's comprehension of haemoglobinopathy screening. Within the West Midlands region, many hospital Trusts have been identified as ‘high prevalence’ for haemoglobinopathies, meaning that many ladies in this area will have undergone haemoglobinopathy screening if they have had a recent pregnancy. This provides rationale to identify whether the public are aware of this testing and the significance of the findings or whether many patients are unaware that they have consented to this test being carried out.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe study was a cross-sectional design using a random sampling method. The study was carried out in the West Midlands region of England, where almost 2% of pregnancies are affected by haemoglobinopathies, resulting in every pregnant mother being tested unless she declines. In this region participants should be aware of haemoglobinopathy screening and the significance of the findings. Participants were recruited amongst the public by approaching individuals in the shopping area of Wolverhampton city centre. All subjects for this study were over the age of 18 and were able to provide informed consent. It was made clear in the participant information sheet that prior expertise or understanding in haemoglobinopathy screening was not required to participate. Data collection took place in June 2024 and occurred through contact with members of the public who then scanned a QR code linked to the participant information sheet, informed consent form and the JISC Online Surveys questionnaire. The questionnaire was developed for this study and contained a mixture of multiple choice, yes/no questions and free text responses (see supplementary information). Participant demographics were also collected as part of the study. All participants completed the questionnaire on their personal device, although a hardcopy survey was available if preferred. A total of 55 participants were recruited.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEthical Approval\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval was sought from the Life Sciences Ethics Committee at the University of Wolverhampton (REC ID: LSEC/2023-24/KD/60). A participant information sheet was provided which explained the objectives and scope of the study. Participants were allowed to freely respond to questions, and they were advised to omit any questions that they did not wish to answer. The participant information sheet explained that participation was voluntary and that all responses were anonymous, meaning individual participants could not be identified. \u0026nbsp;All participants completed an informed consent form which was embedded into the JISC Online Surveys questionnaire.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eData analysis\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eData was analysed using statistical analysis of the quantitative data (e.g. frequency data and percentages as appropriate). To determine statistical significance, non-parametric Mann Whitney U or Kruskal Wallis tests were carried out using IBM-SPSS Statistics version 29. Statistical significance was set as \u003cem\u003ep\u003c/em\u003e\u0026lt;0.05. Qualitative data was analysed using thematic analysis according to Braun and Clarke to identify significant themes (26). This analysis included reading and familiarisation of the data, coding, searching for themes, reviewing themes, defining and naming themes, and final analysis. The researchers read the data for familiarity, generated codes to form initial themes, and checked for plausibility. The process was repeated by both researchers, and the final themes were collectively agreed upon to produce the thematic analysis.\u003c/p\u003e"},{"header":"RESULTS ","content":"\u003cp\u003e\u003cem\u003eDemographic Information\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThere were 55 respondents who completed the questionnaire. Most participants in the study identified as female n=46 (84%) and only 9 (16%) identified as male. Participants were from a range of different age groups as shown in \u003cstrong\u003efigure 1\u003c/strong\u003e, with the majority of participants being in the 35-39 or 40-44 age groups.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMost of the study participants identified as African or African Caribbean (n= 39, 71%) as shown in \u003cstrong\u003efigure 2\u003c/strong\u003e. Whilst 13% of participants (n=7) identified as White European, only 7% of participants (n=4) identified with an ethnic origin as the Indian sub-continent. This is not reflective of the population make up within the West Midlands area and is a recognised limitation of the study.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eQuantitative Data Analysis\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants were asked several questions which had ‘yes’, ‘no’ or ‘don’t know’ options, as shown in \u003cstrong\u003efigure 3\u003c/strong\u003e. When asked to self-assess their understanding of haemoglobinopathies and why screening was important, 29 participants (53%) felt that they had a good understanding, whilst a further 18 participants (33%) felt that they did not and a further 8 participants (14%) did not know (\u003cstrong\u003efigure 3A\u003c/strong\u003e). Most participants (n= 36, 65%) felt that they understood the purpose of screening for haemoglobinopathies, whilst 13 participants (24%) felt that they did not and a further 6 participants (11%) did not know (\u003cstrong\u003efigure 3B\u003c/strong\u003e). The majority of participants (n=33, 60%) felt that they were not adequately informed about the process of haemoglobinopathy screening, with only 17 (31%) of participants feeling that they were adequately informed (\u003cstrong\u003efigure 3C\u003c/strong\u003e). This is an interesting finding considering that 33 participants (60%) reported that they or their partner had been pregnant in the last 10 years and were therefore likely to have been tested for haemoglobinopathies if they are resident in the West Midlands area. Finally, participants reported being willing to participate in community events about haemoglobinopathy screening, with 58% (n= 32) stating they would be happy to do this. Only 5 participants (9%) were not willing to participate in community events and 18 participants (33%) were unsure whether they would participate (\u003cstrong\u003efigure 3D\u003c/strong\u003e).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eParticipants were also asked how confident they felt in their knowledge of haemoglobinopathy screening. Only 43 responses were received to this question, with 12 respondents (22%) opting to omit their response (\u003cstrong\u003efigure 4\u003c/strong\u003e). Only 11 participants reported that they felt confident or quite confident in their knowledge of haemoglobinopathy screening, representing 20% of all participants. There were 17 participants who reported feeling not very confident or not at all confident (31%) and a further 15 participants (27%) chose the ‘neither confident nor unconfident’ response. This demonstrates that many participants in the study lacked confidence in their knowledge of haemoglobinopathies, despite 60% of participants reporting that they or their partner have been pregnant in the last 10 years and therefore were likely to have been tested for the condition. The high proportion of participants choosing the ‘neither confident nor unconfident’ and choosing to omit this question likely reflects a lack of confidence in their own knowledge, which will be discussed further in the discussion.\u003c/p\u003e\n\u003cp\u003eA series of Kruskal Wallis tests were performed to identify whether a statistically significant difference existed between several different factors. There was no statistically significant difference between age and whether the participant knew whether they had been tested for a haemoglobinopathy (\u003cem\u003ep\u003c/em\u003e=0.509). There was no statistically significant association between age and whether the participant believed that they have a good understanding of what haemoglobinopathies are and why testing for them is important (\u003cem\u003ep\u003c/em\u003e=0.353). There was no statistically significant difference between ethnic origin and whether the participant was aware that they had been tested for a haemoglobinopathy (\u003cem\u003ep\u003c/em\u003e=0.324). This was also the case for ethnicity and whether the participant was aware of what haemoglobinopathies are and why screening is important (\u003cem\u003ep\u003c/em\u003e=0.795).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eA Mann Whitney U test was performed to identify whether there was an association between gender and whether participants or their partners had ever been tested for a haemoglobinopathy and found no significant difference (\u003cem\u003ep\u003c/em\u003e=0.377). A non-statistically significant difference was also found for the association between gender and self-perceived understanding of haemoglobinopathy screening and why it is important (\u003cem\u003ep\u003c/em\u003e=0.990). This was reflected when considering a history of pregnancy in the last ten years and understanding of haemoglobinopathy screening and why it is important (\u003cem\u003ep\u003c/em\u003e=0.819). There was a non-statistically significant difference between pregnancy in the last ten years and knowledge of whether the participant or their partner had been tested for a haemoglobinopathy (\u003cem\u003ep\u003c/em\u003e=0.115). This non-statistically significant difference was found between parental status and whether the participant or their partner had ever been tested for a haemoglobinopathy (\u003cem\u003ep\u003c/em\u003e=0.104). Finally, this was also found when considering parental status and whether the participant believed they had a good understanding of haemoglobinopathy screening (\u003cem\u003ep\u003c/em\u003e=0.720). \u0026nbsp;This series of non-statistically significant differences between the participants suggests that, although the study demographics suggest that significant proportion of the participants would have been tested for a haemoglobinopathy, being tested does not result in an increased understanding of haemoglobinopathy screening results.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eQualitative Analysis\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eA thematic analysis was carried out for the free-text responses according to Braun and Clarke (26). The thematic analysis has been summarised into a diagram for ease of interpretation, but is underpinned by several illustrative quotes, which have been outlined below. \u003cstrong\u003eFigure 5\u003c/strong\u003e demonstrates the thematic analysis for barriers to haemoglobinopathy screening that were identified by the participants.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePoor awareness\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants considered their experiences of haemoglobinopathy screening and despite experience of this, an understanding of the implications of this was lacking suggesting a poor understanding of the condition. \u0026nbsp;One of the participants reported:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“My partner has thalassemia, but it doesn’t seem to impact him much - he has dodgy red blood cells that impairs his immune system and that’s all I know to be honest.”\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis suggests a poor awareness of thalassaemia. The phrase \"dodgy red blood cells\" points to a basic understanding of the disorder, implying that although some awareness exists, a thorough understanding is lacking. However, some participants demonstrated a much greater understanding and demonstrated the importance of identifying haemoglobinopathy carrier status for family planning purposes:\u003c/p\u003e\n\u003cp\u003e“I knew since I was 12 years old that I was AS. Before starting any relationships, I would ask my partner his genotype. Before marriage, we went for screening to make sure there were no errors in our status.”\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis shows a good understanding of the significance of the condition and the implications of this for future life decisions and the importance of this when deciding to participate in antenatal screening tests. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eStigma and fear\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSome of the participants highlighted fear and potential stigma of screening may prevent people from wanting to be tested. Participants also drew attention to the importance of confidentiality in diagnostic testing and wanting assurances that this information would not be shared without appropriate permissions.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOne participant stated:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“Fear of results so not willing to participate in testing. Ignorance to conditions and how it affects people.”\u003c/p\u003e\n\u003cp\u003eThis answer suggests that some people might not recognise the importance of early identification or might not understand the significance of this for the future. This statement suggests that fear of a positive diagnosis and a lack of knowledge about haemoglobinopathies are significant barriers to screening. If participants are concerned about the long-term consequences of screening, such as insurance implications, the impact on family planning and choosing a life partner then this may result in a reluctance to come forward for testing as part of routine antenatal screening.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsequences of Screening\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants identified that there may be a reluctance to participate in screening programmes due to concerns about the consequences of testing, such as the impact of the results for family planning decisions and implications in other aspects of life, such as obtaining health or life insurances.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOne participant explained that there were concerns about how the data would be used and who would have access to it as well as how accurate the test results would be:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“Understanding what the conditions are, the accuracy of the test, confidentiality of results, and potential stigma.”\u003c/p\u003e\n\u003cp\u003eThis participant demonstrated the importance of understanding in a successful screening programme, whilst focusing upon the wider implications of testing and how their data would be used. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCultural and language barriers and community involvement\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eLanguage barriers were highlighted by the participants who suggested the use of different languages to educate the public about haemoglobinopathy screening. This highlighted the importance of providing multilingual resources.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eParticipants stated:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“More literature published in different languages- mobile clinics, talks in local communities - places of worship, schools, libraries etc. and TV advertisements”.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“Create more public engagement through social/community forums like churches, mosques and institutions.”\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis suggests that promoting the creation and distribution of instructional materials in several languages is crucial to reaching non-English speaking populations. Wherever diverse groups assemble, such as local community centres, places of worship, educational institutions, and libraries, these products should be available.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eParticipants were asked how public healthcare providers can strengthen their education and awareness campaigns to increase the general publics’ comprehension of haemoglobinopathy screening, especially among at-risk groups. The thematic analysis of the responses to this question are shown in \u003cstrong\u003efigure 6\u003c/strong\u003e.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSocial media and media campaigns\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMany participants identified the same key aspects, including radio and television, social media campaigns, school healthcare education initiatives and targeted health workshops as well as increasing community involvement. This shows that the majority of participants were aware of the importance of the multi-channel approach, which includes focused efforts in community settings, businesses, and schools in addition to platforms like social media and conventional media for successfully reaching individuals. Many participants stated public healthcare providers could strengthen education and awareness campaigns by tailoring messages to different languages and cultures, partnering with community leaders, using multiple media channels, providing clear and simple information, offering community workshops, and integrating screening information into broader health programmes.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eTargeted health campaigns\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMany participants indicated that healthcare providers can strengthen their education and awareness campaigns to increase the general publics’ comprehension of haemoglobinopathy screening. This was evident under the theme ‘targeted health campaigns’. One participant commented:\u003c/p\u003e\n\u003cp\u003e“Better awareness and information given at pregnancy booking and family planning clinics”.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis suggests that during patient appointments, healthcare professionals should promote screening more comprehensively, ensuring that individuals have a good level of understanding of the condition and why screening is important. Patients should also be fully informed when receiving their screening results to ensure they know what has been tested and what the results indicate.\u003c/p\u003e\n\u003cp\u003eParticipants also drew attention to the perceived inequalities that are associated with haemoglobinopathies when compared to other health conditions. One participant stated:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“If this issue impacted white people, everyone would be aware”\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe comment suggests that the participant felt that health conditions impacting non-white populations are often given less consideration, resources, or immediacy compared to problems that impact white individuals.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEngaging young people and community initiatives\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMany participants felt that educational systems were a good opportunity to disseminate information to ensure that young people had a better awareness of the condition and why screening was important. One of the participants reported:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“Talks in schools, incorporated into educational curriculum, public awareness advertising.”\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThese programs are thought to be an efficient means of raising awareness and interacting with communities, especially those that may be more difficult to engage through the media or healthcare settings. The use of these platforms implies support for community-based and culturally sensitive methods of health education. This method of educating the public is particularly important for engaging young people who may have concerns about the reliability of information that is shared with them through other channels.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eHealthcare Professional Education\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWhilst education of patients and equipping them with the required information was considered important, many participants felt that it was the responsibility of healthcare professionals to share this information in an accessible way. As patients often rely on healthcare professionals or online resources for information, it is essential to ensure that healthcare professionals are well prepared to explain complex scientific concepts in an accessible way to the lay person. One participant stated that to increase the general publics’ understanding of a concept it was essential to provide:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“More literature published in different languages, mobile clinics, talks in local communities e.g. places of worship, schools, libraries etc. TV advertisements. Educating midwives and those who may naturally deliver information.” \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIf healthcare professionals have a good understanding of these concepts, they also need the ability to express themselves clearly and succinctly and direct patients to appropriate resources with scientifically accurate information.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eIncreasing funding\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMany participants commented that there should be additional support services available for individuals and families that are impacted by haemoglobinopathies. Many participants were in favour of genetic counselling, psychological support, increased education for patients, financial assistance as well as access to support groups and specialised healthcare services. The participants’ responses indicated a clear understanding of the broad spectrum of support services needed by individuals and families affected by haemoglobinopathies. Whilst financial assistance was identified as important by several participants, the importance of free screening was also highlighted to ensure that appropriate family planning decisions can be made.\u0026nbsp;\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThe aim of this study was to evaluate the publics’ comprehension of haemoglobinopathy screening in the West Midlands region of England. Participants demonstrated variable levels of knowledge regarding haemoglobinopathy screening. The results are in line with a previous study which considered pre-marital screening for haemoglobinopathies in Saudi Arabia and demonstrated varying degrees of knowledge amongst the participants (27). This previous study explored pre-marital screening rather than antenatal screening but also supported the use of media sources to provide relevant information. However, the participants who discussed pre-marital screening were university students studying health related courses and the authors demonstrated a strong correlation between level of education and understanding of haemoglobinopathy screening results (27). It is possible that the students’ educational background resulted in an increased understanding of haemoglobinopathy screening when compared to the general public.\u003c/p\u003e\n\u003cp\u003eIn the present study, 47% of participants showed a lack of understanding of what haemoglobinopathies are and why screening for them is important. Only 20% of respondents stated that they felt ‘very confident’ or ‘quite confident’ in their understanding of haemoglobinopathy screening results. These findings are reflective of those seen in another Saudi Arabian study involving university students who reported a lack of understanding of pre-marital screening with only 53.9% of participants having heard of thalassaemia (28). This suggests that public knowledge can be improved further by encouraging health awareness programmes in the community. Other important sources of information are social media, an informative and approachable healthcare professional, television and radio and institutional involvement (29). Lectures and traditional academic sessions were considered less favourable sources of information, suggesting that this format would not be accessible for the public. There is a need for targeted, readily accessible, culturally competent training programs to ensure that at risk populations are better prepared to take charge of their own health management (30). Participants demonstrated an awareness that managing haemoglobinopathies requires comprehensive and coordinated support that addresses not just the physical aspects of the condition but also the emotional, financial, and social challenges that come with it (31).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eProviding education in school or university on the importance of haemoglobinopathy screening along with social media initiatives could be beneficial in increasing screening uptake. In a recent study, participants identified the internet, family and friends as sources of information regarding pre-marital screening in Saudi Arabia, but there was no discussion around the reliability of these information sources (32). Family and friends have been acknowledged as a source of haemoglobinopathy information in another study, particularly those who are impacted by a clinical diagnosis (33). Participants expressed a preference for information regarding haemoglobinopathy screening to be disseminated via media channels and social media platforms. This may result from individuals utilising social media platforms regularly (often daily) and the ease of access to this information. Although social media platforms have shown benefits in health promotion, there is also the potential for incorrect or misleading information to be shared, and this has the potential to negatively impact health screening choices (34). Social media has also been shown to be a potentially harmful source of information for young people with evidence of negative health behaviours being shared through this platform (35).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe quantitative data analysis within this study\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003edemonstrated a series of non-statistically significant differences between the participants regardless of age, gender and ethnic origin. This suggests that, although 60% of the participants (or their partners) would likely have been tested for a haemoglobinopathy due to a recent pregnancy, being tested does not result in an increased understanding of haemoglobinopathy testing. This finding suggests that healthcare professionals are not effectively communicating the results of these screening tests to their patients or that perhaps healthcare professionals do not have sufficient understanding of the results to allow them to communicate the significance effectively. A recent study identified that providing results and an indicative reference range for laboratory data is not effective and that patients should be provided with tailored information (36). Furthermore, patients have expressed a preference for more information following blood test results, particularly when further follow up is required (37). However, clinicians have also reported that communication of normal results is unnecessary and that complex cases or those requiring follow up need interactive methods of communication with patients (37). For haemoglobinopathy screening, it is possible that healthcare professionals do not accurately communicate normal results to patients as they perceive this to be of lesser importance, which has resulted in a poor understanding of this screening in the study participants.\u003c/p\u003e\n\u003cp\u003eThis lack of understanding of haemoglobinopathy screening results was further evidenced by the high proportion of participants choosing the ‘neither confident nor unconfident’ response (27%) or choosing to omit the question (22%) when asked how confident they felt in their understanding of haemoglobinopathy screening results. In response to this question, only 20% of participants stated that they felt quite confident or very confident. Choosing a neutral opinion or omitting the question is often used in response to unfamiliar terms, considering it to be an easier option (38). This likely reflects a lack of confidence in their own knowledge which is possibly related to a lack of information from healthcare professionals regarding the importance of screening. However, the inclusion of a neutral option can encourage satisficing where participants may lose motivation or the ability to respond in a survey questionnaire, leading to a desire to choose an option that would be considered acceptable and not demonstrate ignorance (39).\u003c/p\u003e\n\u003cp\u003eThe lack of understanding of haemoglobinopathy screening could result from several factors, including a perception of insufficient information, presence of language barriers, inaccessibility of complex medical terminology and poor explanations by healthcare professionals. Enhancing communication strategies is important, ensuring that communication methods are suitable for those patients for whom English is not their first language. Through providing multi-lingual healthcare information, and cultural sensitivity, information can be provided that is accessible to all patient groups (40). This can be achieved by using visual aids and simplified language as appropriate. In this study, 60% of participants have been pregnant or their partner has been pregnant in the last ten years, yet a lack of understanding of what haemoglobinopathy screening is and why it is important was evident. Participants were also asked how to address any stigma or fear associated with haemoglobinopathy screening as this is a potential barrier to participation. Most participants responded that there should be educational strategies to increase public awareness, counselling, and that services should be accessible and convenient for patients. By linking screening to existing antenatal care, the programme aims to minimise inconvenience (10).\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eLimitations of the Study\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOne of the key limitations of this study is that the sample was not representative of the ethnic diversity of the West Midlands population. Recent regional demographic data indicates that 60.6% of Wolverhampton residents identify as White British, and 9.3% identifying as Black African or African Caribbean (41). In this study, however, 71% of participants identified as African or African Caribbean, over-representing this population compared to the wider society. The findings are therefore likely to reflect most strongly on the views, knowledge levels, and attitudes of that community and have limited generalisability to the wider regional population. The study should be replicated with a larger group of participants which more closely represents the ethnic diversity in this area of the UK.\u003c/p\u003e\n\u003cp\u003eThe participants were predominantly female (84%), which is unusual given the random sampling method that was used in the study. One possible explanation for this is that female participants were more easily recruited due to a perception that the study was more relevant due to discussion of antenatal and postnatal screening. This study was carried out in the West Midlands region of the UK, where there is a high prevalence of haemoglobinopathies. It is important to note that this data represents only part of the national picture and there are other areas of the UK, such as Greater London and the North of England which are also considered high prevalence for haemoglobinopathies (42). Whilst this study represents valuable data from a high prevalence area, the study would need to be expanded to consider whether there is transferability to other high prevalence regions of the UK.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOne further limitation of this study is the use of self-perceived understanding rather than an objective assessment of participants' factual knowledge of haemoglobinopathy screening (43). The self-reported nature of understanding is inherently subjective and susceptible to social desirability bias and overestimation, so that participants reporting good awareness may not necessarily possess accurate or sufficient knowledge to support truly informed decision-making (44). Conversely, numerous haemoglobinopathy screening studies have employed objective assessment tools, such as scored questionnaires within knowledge-attitude-practice (KAP) frameworks, facilitating direct evaluation of factual comprehension and more precise detection of knowledge deficiencies (45-47). This study gauged participants' confidence and perceived awareness through self-perception and did not verify if their perceived understanding was correct. In the future, integration of subjective self-measurements with well-established objective knowledge measures could help thoroughly assess public understanding and improve education and health policies.\u003c/p\u003e\n\u003cp\u003eGiven the limited sample size (n=55), the generalisability of these findings is limited (48). With a small sample size, the impact of a single outlier is greater which can have a significant impact on overall findings (49). This in turn leads to a reduction in the reliability of subgroup analysis, such as demographic information. For example, analysis broken down by age, ethnicity or educational attainment may consist of too few individuals in each subgroup to generate reliable, statistically significant findings (50). Repeating the study with a larger sample would be beneficial to reduce random error, narrow the width of the confidence intervals, increase statistical power, and ensure better precision and dependability of estimates. These changes will lead to an increase in both the accuracy of the findings and generalisability (51).\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eRecommendations\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAlthough there are recognised limitations of the study, there are several recommendations that are required to improve public understanding of haemoglobinopathy screening. The public lack an understanding of what haemoglobinopathies are and why it is important to screen for them. Strategies are required to address this through targeted public health campaigns. Participants felt that social media and registered healthcare professionals, along with community engagement through schools and religious centres were appropriate methods to share health related information. Strategies are required to engage all areas of the community through reducing racial disparities, language barriers and challenges to accessing health information. Information should be provided in an accessible way that is relevant and understandable to the layperson. It is important that this communication takes place in an appropriate format and language barriers are suitably addressed. These steps are essential to prevent stigma and fear associated with screening tests.\u003c/p\u003e\n\u003cp\u003eParticipants felt that healthcare professionals were an essential source of information regarding health-related conditions, but that healthcare professionals required further education to allow them to accurately communicate the importance of screening and to help patients to comprehend the significance of both normal and abnormal results. Through supporting education of healthcare professionals on the importance of complex laboratory tests, patients can gain a better understanding of haemoglobinopathies and why screening for them is essential for family planning decisions and early diagnostic interventions. Healthcare professionals have a responsibility to ensure that patients are fully aware of the tests which are being performed and obtain informed consent for this testing. Despite 60% of participants stating that they or their partner had been pregnant in the last 10 years, only 31% of participants felt they had been adequately informed about haemoglobinopathy screening. In the West Midlands area, many NHS Trusts are considered high prevalence for haemoglobinopathies, meaning screening is performed unless a patient opts out of the testing. This data suggests that patients may not have an adequate understanding of the screening tests that they are consenting to, an issue which has been previously identified with other forms of screening (52,53).\u0026nbsp;\u003c/p\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eThis study has demonstrated a perceived lack of understanding of haemoglobinopathy screening and why this is important for family planning and for early diagnostic and treatment interventions. Addressing this lack of understanding can be achieved through social media, educational institutions, word of mouth within communities, religious institutions, and healthcare professionals. Additionally, it is important to recognise and address the challenges and barriers that exist, including racial inequalities, language barriers, fear and stigma associated with testing and limited access to health information. Healthcare professionals have a responsibility to ensure that patients are aware of the screening tests that will be performed and why these are important, as patients can only effectively give consent for a procedure if they are fully aware of what is involved. This requires the ability to communicate complex ideas to the layperson and to ensure that information has been understood by the recipient. It is likely that further healthcare professional educational strategies and interventions will be required to achieve this. Comprehensive strategies are required to educate the general population about haemoglobinopathy screening and why this is an important public health policy.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eFOQ: Family Origin Questionnaire\u003c/p\u003e\n\u003cp\u003eHb: Haemoglobin\u003c/p\u003e\n\u003cp\u003eKAP: Knowledge, attitude and practice\u003c/p\u003e\n\u003cp\u003eNHS: National Health Service\u003c/p\u003e\n\u003cp\u003ePND: Prenatal diagnosis\u003c/p\u003e\n\u003cp\u003eSCD: Sickle Cell Disease\u003c/p\u003e\n\u003cp\u003eUK: United Kingdom\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthical approval and consent to participate:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was conducted according to the Declaration of Helsinki. Ethical approval for this study was obtained from the Life Sciences Ethics Committee at the University of Wolverhampton (REC ID: LSEC/2023-24/KD/60). All participants read a participant information sheet and completed a consent form prior to participation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for Publication:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Availability:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data set supporting the conclusions of this article is included within the article (and its additional files).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study received no internal or external funding.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contributions:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHS and KD participated in the design, interpretation and analysis of the data and co-authored and reviewed the manuscript. HS carried out the data collection and both HS and KD carried out the data analysis. Both authors approved the final version.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data presented in this article forms part of a Masters dissertation submission for the first author (HS).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWe would like to express our gratitude to each volunteer who assisted us in conducting this research. The fact that they were willing to contribute their time, thoughts, and experiences made this study possible. Our sincere appreciation goes out to them for the insightful comments they provided to the questionnaire and the written feedback, which assisted us in gaining a deeper understanding of public awareness around haemoglobinopathy screening.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eAngastiniotis M, Lobitz S. Thalassemias: An Overview. 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Enhancing Patient Understanding of Laboratory Test Results: Systematic Review of Presentation Formats and Their Impact on Perception, Decision, Action, and Memory. Journal of medical Internet research 2024 Aug 12;26(6):e53993.\u003c/li\u003e\n\u003cli\u003eNankervis H, Huntley AL, Whiting P, Hamilton W, Singh H, Dawson S, et al. Communicating blood test results in primary care: a mixed-methods systematic review. Br J Gen Pract 2024 -10-07;75(753):e222\u0026ndash;e231.\u003c/li\u003e\n\u003cli\u003eMu\u0026ntilde;oz Van Den Eynde A, Lobera J. Analysis of the tendency to select the \u0026ldquo;neither nor\u0026rdquo; option in agreement/disagreement scales on a low \u0026ndash; salience topic: The contribution of individual differences. Methodological Innovations 2022 -09-30;15(3):289\u0026ndash;302.\u003c/li\u003e\n\u003cli\u003eJon A. Krosnick. Response strategies for coping with the cognitive demands of attitude measures in surveys. Applied Cognitive Psychology 1991 May;5(3):213\u0026ndash;236.\u003c/li\u003e\n\u003cli\u003eLazaro G, Dicent Taillepierre J, Richwine C. Literacy and Language Barriers to Overcome in Laboratory Medicine. Clinics in Laboratory Medicine 2025 -04-07;44(4):629\u0026ndash;645.\u003c/li\u003e\n\u003cli\u003eWest Midlands Combined Authority. West Midlands State of the Region 2024-2025. 2025; Available at: https://www.wmca.org.uk/documents/research-and-insights/west-midlands-state-of-the-region-2024-2025/west-midlands-state-of-the-region-2024-2025/. Accessed 19/12/25.\u003c/li\u003e\n\u003cli\u003eNational Haemoglobinopathy Registry. National Haemoglobinopathy Registry Annual Report 2023/2024. National Haemoglobinopathy Registry 2024:1\u0026ndash;24.\u003c/li\u003e\n\u003cli\u003eSong I. Differential relationships between self-reported and performance-based health literacy measures and health-related quality of life: A cross-sectional study. Medicine (Baltimore) 2025 Jul 18;104(29):e43458.\u003c/li\u003e\n\u003cli\u003eSchulz PJ, Pessina A, Hartung U, Petrocchi S. Effects of Objective and Subjective Health Literacy on Patients\u0026rsquo; Accurate Judgment of Health Information and Decision-Making Ability: Survey Study. Journal of medical Internet research 2021 Jan 21;23(1):e20457.\u003c/li\u003e\n\u003cli\u003eSarpong ML, Tetteh RJ, Amponsah FA, Amo-Kodieh P, Owusu EA, Ntiamoah P, et al. Young adults\u0026rsquo; knowledge, attitudes, and practices regarding premarital screening for genetic blood disorders and associated sociodemographic determinants in the Ahafo Region of Ghana: a cross-sectional study. Arch Public Health 2025 May 9;83(1):1\u0026ndash;13.\u003c/li\u003e\n\u003cli\u003eMohammed Sediq RA, Sulaiman SA, Al-Allawi N. Attitude and Knowledge of Participating Couples Towards the Premarital Hemoglobinopathy Screening Program in Duhok\u0026ndash;Iraq. Advanced Medical Journal 2024 Dec 4;9(4):84\u0026ndash;93.\u003c/li\u003e\n\u003cli\u003eAl Qahtani FH, Alageel MS, Alhuzaimi DI, Sirajuddin FS, Amlih DF, Al-Qattan HM, et al. Quantifying the Levels of Knowledge, Attitude, and Practice Associated with Sickle Cell Disease and Premarital Genetic Counseling in 350 Saudi Adults. Advances in Hematology 2019;2019(2019):3961201.\u003c/li\u003e\n\u003cli\u003eHamad AA, Ahmed SK. Understanding the Lower and Upper Limits of Sample Sizes in Clinical Research. Curēus (Palo Alto, CA) 2025 Jan 1;17(1):e76724.\u003c/li\u003e\n\u003cli\u003eAndrade C. Sample Size and its Importance in Research. Indian journal of psychological medicine 2020 Jan 1;42(1):102\u0026ndash;103.\u003c/li\u003e\n\u003cli\u003eCao Y, Chen RC, Katz AJ. Why is a small sample size not enough? The oncologist (Dayton, Ohio) 2024 Sep 1;29(9):761\u0026ndash;763.\u003c/li\u003e\n\u003cli\u003eFaber J, Fonseca LM. How sample size influences research outcomes. Dental Press Journal of Orthodontics 2014 Aug 1;19(4):27\u0026ndash;29.\u003c/li\u003e\n\u003cli\u003eMichie S, Dormandy E, Marteau TM. Informed choice: understanding knowledge in the context of screening uptake. Patient education and counseling 2003 Jul 1;50(3):247\u0026ndash;253.\u003c/li\u003e\n\u003cli\u003eBaker H, Crockett R, Uus K, Bamford J, Marteau T. Why don\u0026apos;t health professionals check patient understanding? A questionnaire-based study. Psychology, health \u0026amp; medicine 2007 May;12(3):380\u0026ndash;385.\u003cstrong\u003e\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Haemoglobinopathy, haemoglobin, prenatal diagnosis, antenatal screening, public awareness","lastPublishedDoi":"10.21203/rs.3.rs-8831037/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8831037/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cem\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHaemoglobinopathy screening is a key public health tool for early detection and prevention of inherited blood disorders, such as sickle cell disease. With the introduction of a national antenatal screening programme in the United Kingdom (UK), laboratory techniques and diagnostic accuracy have improved, but public knowledge and understanding still influence screening programme success. This study examined public understanding of haemoglobinopathy screening in the West Midlands region of England, a high-prevalence region where many women are routinely tested during pregnancy. The study aimed to ascertain whether people were aware of their screening status and understood the result implications.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eA cross-sectional survey was conducted in June 2024. Participants were recruited in the retail area of Wolverhampton city centre in the West Midlands region of England. Participants accessed a questionnaire via JISC Online Surveys. The questionnaire included demographic information, multiple-choice and free-text questions. Quantitative data was analysed using the Kruskal Wallis and Mann Whitney U tests, whilst qualitative data was analysed using thematic analysis. Responses were obtained from 55 participants.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOf the 55 participants who completed the survey, the majority were female (84%) and between the ages of 35–44 years. Most were of African or African Caribbean ethnicity (71%). Although 53% reported a good self-perceived understanding of haemoglobinopathies, 60% believed that they were inadequately informed about the screening process. Of the 60% who had been pregnant in the last 10 years, only 20% were confident about their knowledge of screening. No associations between knowledge or testing history were found with age group, gender, ethnicity, history of pregnancy, or parental status. Poor awareness, fear and stigma, unknown screening consequences, cultural and linguistic barriers were identified in qualitative analysis.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe need for increased awareness of haemoglobinopathy screening was a strong recurring theme. Increasing public comprehension through social media, schools, community and religious centres and through targeted communication by relevant health professionals would address this lack of awareness. Strategies are required for overcoming various challenges regarding racial disparities, language barriers, and difficulties in accessing health information to ensure a better understanding of the importance of screening.\u003c/p\u003e","manuscriptTitle":"Assessing the Public Understanding of Haemoglobinopathy Screening in the United Kingdom","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-11 06:10:50","doi":"10.21203/rs.3.rs-8831037/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-03-23T16:57:58+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-22T13:40:11+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-18T18:01:22+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-16T00:42:49+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-15T19:18:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"176114474477642838259357810929282326906","date":"2026-03-13T10:10:58+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"101216975077064679917532827434857413306","date":"2026-03-13T08:50:06+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"272155764910528688348361630668279644235","date":"2026-03-10T06:34:41+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"199157907565696438194318729649653644635","date":"2026-03-09T07:45:34+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"315382186582074993970227930651099658013","date":"2026-03-07T12:07:18+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-03-05T11:03:52+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-04T05:43:09+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-02-11T12:36:07+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-02-11T11:02:59+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2026-02-11T10:39:31+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"a498dc41-1c7f-4e1a-bdc7-c19ba0cba466","owner":[],"postedDate":"March 11th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-03-11T06:10:55+00:00","versionOfRecord":[],"versionCreatedAt":"2026-03-11 06:10:50","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8831037","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8831037","identity":"rs-8831037","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}