Promoting Sickle Cell Trait Awareness and Education: A Typology of Interventions in the United States to Inform Ongoing Efforts to Patients and Providers ()
1. Introduction
In the USA, African Americans carry the burden of sickle cell trait with 3.6 million, or 1 in 13 people who are African American or Black affected [1] . However, anyone of any race or ethnicity can have a sickle cell trait and, in one study, the trait has been identified in 7.3% of Black newborns, 6.9% of Hispanic newborns, 2.2% of Asian American and Native Hawaiian/Pacific Islander newborns, and 0.3% of White newborns [1] . There is no treatment or cure for having a sickle cell trait with potential associated health outcomes treated on an individual basis.
Sickle Cell Disease (SCD), which is a different condition than sickle cell trait, is typically the focus of awareness and education efforts in this space. People with sickle cell trait carry only one copy of the altered hemoglobin gene and in contrast, people with sickle cell disease carry two copies of the altered hemoglobin gene, which often causes more devastating health complications than in people with sickle cell trait, but this is not always the case [2] . While commonly incorrectly considered benign by providers and the public, people with a sickle cell trait experience a myriad of debilitating and life-threatening outcomes [3] that are initiated or exacerbated by extreme conditions, such as intense physical exertion, heat, dehydration, and high or low altitude [4] . This can lead to outcomes such as renal medullary carcinoma (RMC) [5] , hematuria (blood in the urine) [6] , hyposthenuria (inability to properly concentrate urine) [7] , chronic kidney disease (CKD) [8] , venous thromboembolism [9] , splenic infarction [10] , exertional rhabdomyolysis [11] , exercise-related sudden death [12] , glaucoma and hemorrhage post-hyphema [13] , and, likely others [14] . Having a sickle cell trait can lead to negative health outcomes; people with the trait have been found to have up to 95% protection against malaria [15] . Exacerbated by the incorrect belief that sickle cell trait is benign, systemic racism, and underfunding of sickle cell trait research, the condition is largely misunderstood and comprehensive and consistent communication is lacking [16] [17] .
Sickle cell disease (SCD) was the first heritable disease to be identified and to receive federal funding for testing in 1972 [18] , [19] but since the initial period, research on the health implications and efforts to raise awareness have been minimal for both sickle cell disease and sickle cell trait [16] . The United States adopted a voluntary and targeted sickle cell trait screening program in 1972, which was replaced by a universal newborn blood screening program in 2006 [18] [20] making available sickle cell trait testing at birth to individuals born in the United States after 2006. There are generations before that time, however, who are still unaware of their status with only 16% of all individuals in the United States aware of their sickle cell trait status [21] . Testing for these individuals can occur at their doctor’s office or various local organizations through a blood test (either capillary electrophoresis, high performance liquid chromatography, or genetic testing), but these methods are often prohibitively expensive and time-consuming [22] and result in underutilization of testing.
A variety of factors contribute to low awareness of sickle cell trait status including not being screened at birth (e.g. prior to screening program, immigration to the United States); lack of follow-up counseling after a positive newborn screen [23] ; and, inconsistent recording of test results [24] . The lack of follow-up counseling for people with a sickle cell trait has led to what experts describe as a “neglected opportunity” to inform affected populations [25] . Additionally, people with a sickle cell trait are commonly misdiagnosed as having other health conditions due to lack of awareness by providers, which is compounded by structural racism and underfunding of research and awareness in this area [16] [17] .
Many awareness and educational interventions for the sickle cell trait community have been developed for people who do not know their sickle cell trait status. These interventions have also been targeted toward people who do know their status but who are at high risk of experiencing related complications, such as athletes, or those in the military because high intensity exercise is a risk factor for experiencing certain complications if precautions are not taken [26] . Sickle cell trait interventions are implemented by either medical institutions such as hospitals, or organizations with a mission to address sickle cell trait. While there are many sickle cell trait-focused organizations, the tailored education and awareness about sickle cell trait is often overshadowed by the organizations focused on SCD, ultimately providing very limited information about sickle cell trait and its related health complications. There are efforts by existing organizations that solely target the sickle cell trait community to provide education and resources but there is an over-reliance on messages that are often inconsistent, incorrect, outdated due to lack of research, or focus too heavily on one outcome (such as reproduction) and not enough on the variety of possible outcomes. For example, results of a thorough environmental scan of these organizations found that some organizations incorrectly report that sickle cell trait is benign and will not cause any issues for the carrier, while other organizations correctly report sickle cell trait can cause debilitating complications and even death [3] . Thus, the need for consistent, accurate, and holistic information around sickle cell trait is essential for providers to be properly trained to deliver education to their patients so patients are correctly informed about sickle cell trait and can make educated decisions to promote positive health outcomes.
Typologies resulting from comprehensive scoping reviews seek to understand human behavior, leading to more successful health promotion efforts, by bridging the gap between cross-case and within-case approaches to data analysis and focus on exploring similarities and differences in participants’ whole accounts of their experiences [27] . An overview of sickle cell trait interventions, the awareness efforts surrounding them, the organizations supporting the interventions, and the impact of the efforts is not well documented in the literature. To address our research questions around what educational and awareness interventions exist around sickle cell trait, we aimed to uncover the landscape of existing sickle cell trait intervention. Understanding the landscape allowed us to uncover the gaps in education and awareness and make recommendations to move toward improving the low awareness in the United States. To do so, we conducted a scoping review of United States-based sickle cell trait interventions and the messaging within those interventions and performed a content analysis to identify the categories and characteristics of different efforts in an effort to inform future efforts. The typology, which is the first to focus on sickle cell trait interventions, provides sickle cell trait organizations and other implementers comprehensive findings to directly educate patients and guide recommendations about targeted interventions to raise awareness through consistent and scientifically-accurate messaging, to educate people and providers on sickle cell trait and the related health complications, and to support the design and implementation of comprehensive sickle cell trait awareness initiatives across the field. The result of this comprehensive education and messaging is to allow people responsible decision-making to promote their individual health and wellbeing.
2. Methods
2.1. Scoping Review
The development of the typology started with a scoping review on a topic that has not been comprehensively reviewed to date [28] . Specifically, the research questions included the following: 1) “What awareness and educational interventions targeting those at risk of having a sickle cell trait exist in the United States?”; and 2) “What educational interventions exist that target those who have a sickle cell trait but do not understand the related health complications?” Literature searches were performed using the following databases: Pub Med, JSTOR, CINAHL, and Science Direct for papers published between 2000 and the present day. Other sources included searches in Google Scholar as well as a snowballing approach to locate additional manuscripts by scanning the manuscript reference lists. Additionally, stakeholder interviews and focus groups with leadership from sickle cell trait organizations (n = 23) resulted in further recommendations for exploration. The following search terms were used in isolation or in combination: “Sickle cell trait interventions”, “Sickle cell trait programs”, “Sickle cell trait education”, “Sickle cell trait screening program”, and “Sickle cell trait support”.
2.2. Typology Components
The typology is organized into two components: 1) Intervention Component Categories and 2) Typology Categories. Intervention Component Categories consist of how the intervention is described to provide a holistic picture of the intervention, as in the case of this typology, the strategies or activities, setting, target population, intervention outcomes, and current operating status of the program. Typology Categories are how the interventions are grouped based on similarities identified in the Intervention Component Categories, so in the case of this typology, the interventions are grouped into Educational Interventions, Combined Educational and Screening Interventions, National Screening Policy or Guideline-Based Interventions, and Sickle Cell Trait Organization-Led Interventions.
2.3. Intervention Inclusion Criteria
The sickle cell trait community is defined as those who have a sickle cell trait, those who are at high risk of having a sickle cell trait but do not know their status, or caregivers of those with a sickle cell trait, such as parents of newborns. Inclusion criteria included interventions after 2000 (unless they were a major intervention in the field or currently active); interventions that target the sickle cell trait community as defined above; and, interventions that targeted those with sickle cell trait even if it also targeted people with SCD. If an intervention did not have evaluation outcomes, they were still included if evaluation was ongoing and/or they fit the other inclusion criteria in order to access the most available information possible. This is especially relevant for the Sickle Cell Trait Organization-Led Interventions category, as these organizations often did not report outcomes or effectiveness of their interventions, most often because the programs are ongoing or were implemented in the last 3 years [29] [30] [31] [32] . Interventions were excluded if they occurred outside of the United States, were clinical interventions, or interventions aimed at healthcare providers given the focus of this typology is awareness and education efforts that target the sickle cell trait community in the United States. Websites were excluded if they did not contain information about a particular intervention or its evaluation. Only interventions in the United States were included in order to capture and subsequently inform targeted awareness efforts [21] .
2.4. Content Analysis
According to previously established typology methods [33] , two reviewers, SC and JG, reviewed each identified manuscript to perform a content analysis and determine the intervention component categories for each manuscript. Reviewers completed comparison of each intervention component category until each category had a distinct set of characteristics with no overlap. Discrepancies were discussed until consensus was reached. After all manuscripts were reviewed for inclusion eligibility, the following five Intervention Component Categories were determined: Strategies or Activities of the Program, Setting, Target Population, Outcomes, and Status of the Program. We then analyzed program components and created the typology. We iteratively compared and contrasted different program components to identify patterns and groupings that were often observed together or appeared to influence other program elements. We also compared any overlapping components or patterns found in multiple categories to further explore these classification definitions, identifying distinguishing characteristics. We continued this process through five iterations until each category had a distinct set of characteristics, resulting in a draft typology. Finally, we validated the draft typology against the research articles to ensure accuracy, with each article fitting distinctly into each category.
2.5. Typology Grouping
Once all articles were collected and reviewed and data was extracted, the constant comparative method [34] was used to create a typology. The articles were grouped into the following typology based on the type of intervention with the following Typology Categories: 1) Educational Interventions, delivered in a variety of formats and settings, for people who have a sickle cell trait or people who are at increased risk of having a sickle cell trait; 2) Combined Education and Screening-Based Interventions that take place in medical settings or the community; 3) National Screening Policy or Guideline-Based Interventions that are implemented to mandate sickle cell trait screening for specific populations, and 4) Sickle Cell Trait Organization-Led Interventions that are implemented to raise awareness of sickle cell trait or increase testing rates across the United States or in specific populations (Figure 1). These four categories emerged as the most common types of education and awareness interventions for sickle cell trait.
3. Results
3.1. Content Analysis: Informing the Intervention Component Categories for the Typology
Among 164 interventions, twenty-five (15%) met the typology inclusion criteria described above and were further grouped into five Intervention Component Categories. The main reason for exclusion was a website hosting information but not a specific intervention. The five Intervention Component Categories included:
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Figure 1. Sickle cell trait typology and intervention component categories structure, results from scoping review of sickle cell trait interventions from 2000-2024 United States.
Strategies or Activities of the Program, Setting, Target Population, Outcomes, and Program Status. Strategies or Activities of the Program include the methods that the intervention utilized to deliver the educational or awareness to the sickle cell trait community. Setting describes the type of institution of intervention delivery (e.g., in a hospital, online, etc.), and the state in which the intervention took place, if available. The Target Population specifies who within the sickle cell trait community was targeted. For example, a program targeting parents of newborns with sickle cell trait compared to adults with sickle cell trait. Outcomes are the results and effectiveness of the intervention, including any reported increases in sickle cell trait knowledge and awareness. Program Status is whether the intervention is active as of 2024. These components informed the creation of the Typology and provided the organizing structure to group information and evidence for future efforts.
Strategies or Activities of the Program: All of the articles discussed the strategies and activities of each program in depth. Of the twenty-five programs uncovered in this component, eleven (44%) [21] [29] [35] - [44] provided education about having a sickle cell trait, whether to people who already know they have a sickle cell trait or those who have just been provided a positive test. Eleven of twenty-five (44%) programs [28] [31] [39] [40] [41] [43] - [48] included screening participants for sickle cell trait. Eight of twenty-five programs (32%) [42] , [44] - [50] included introducing policies or guidelines for screening various populations for sickle cell trait to increase awareness of one’s status. Ten of these twenty-five interventions (40%) [21] ] [31] [35] - [43] used individual-level education with a provider or trained educator providing education to the participant one-on-one.
Setting: Six out of twenty-five programs (24%) took place in healthcare settings [21] [35] [36] [37] [39] [41] [42] , three of twenty-five programs (12%) were implemented in specific communities [31] [40] [43] , and thirteen (52%) were nationwide [29] [30] [32] [42] [44] - [52] . Four of twenty-five interventions (16%) were delivered virtually such as through video modules or providing education over the telephone [35] [38] [41] [44] .
Target population: Of the twenty-five interventions, seven (28%) targeted the parents of newborns who were diagnosed with sickle cell trait [20] [31] [36] - [41] , and twelve (48%) targeted people who already know their sickle cell trait status [30] [32] [35] - [42] [51] [52] . Nine of twenty-five (36%) targeted specific populations of people, such as newborns, athletes or those in the military [40] [42] [44] - [51] .
Outcomes: Sixteen of twenty-five interventions (64%) had outcomes that reported increased participant knowledge or awareness of sickle cell trait [35] [36] [37] [38] [40] [42] [44] - [51] . Nine programs (36%) have not yet undergone evaluation or did not increase participant knowledge or awareness [21] [29] [30] [31] [32] [39] [41] [43] [52] . Fifteen programs (60%) were overall effective as reported by the authors of the studies [21] [35] - [50] .
Program Status: Eleven of twenty-five interventions (44%) are still active [29] [31] [32] [35] [37] [38] [41] [42] [47] [51] [52] , three of which (27%) are nationwide policies or guidelines [42] [44] [46] . Five programs (20%) designed to increase knowledge and perceptions within a designated period of intervention time ended by the time the typology was conducted [21] [30] [39] [40] [42] , one intervention (4%) resulted in determination of feasibility of future community-based interventions [43] , one (4%) was a policy implemented to provide short term funding [50] , and one intervention (4%) informed an awareness and education program that is still active today [37] .
3.2. Typology Results
The Intervention Component Categories inform the Typology. The articles were grouped into four categories representing the most common type of educational and awareness interventions for sickle cell trait: 1) Educational Interventions, 2) Combined Education and Screening-based Interventions, 3) National Screening Policy or Guideline-Based Interventions, and 4) Sickle Cell Trait Organization-Led Interventions.
Educational Interventions: Seven of twenty-five interventions were Educational Interventions (28%) and utilized various methods of providing knowledge, including video, audio, and text-based, mass media, and one-on-one virtual and in-person counseling [21] [35] - [40] (Table 1). While some interventions focused on educating people who already know their sickle cell trait status on the impact having the trait means for their life, many of these interventions aimed to educate parents of newborns who recently received a positive screening
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Table 1. Sickle cell trait typology of United States interventions from 2000-2024 educational interventions (n = 7).
for their child. Mixed methods assessments were used to evaluate these interventions, including a survey [35] [36] [37] [38] [39] , focus group [21] , or interview [37] [40] to assess baseline knowledge pre-educational intervention and post-intervention.
Combined Screening and Educational-Based Interventions: Three of twenty-five interventions (12%) were categorized as Combined Screening and Educational-Based Interventions [29] [41] [42] [43] (Table 2). These interventions either encourage people to know their sickle cell trait status by getting tested and then provide education to those who screen positive, or include combined newborn screening and follow up education. Educational efforts were delivered in a variety of formats. For example, Red Cross Sickle Cell Trait Screening provided SCT testing for blood donors who opted in; if the donor receives a positive test result, they are directed to the Red Cross website for brief education on sickle cell trait but also encouraged to follow up with their healthcare provider [29] .
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Table 2. Sickle cell trait typology of United States interventions from 2000-2024 combined education and screening-based Initiatives (n = 3).
In two interventions, the follow-up education for people who screened positive was provided as part of the intervention by a primary care provider [41] , or a genetic counselor [43] . In one intervention, the education began during pregnancy with a 10-minute education videotape specifically produced for this target population, and then post-natal sickle cell trait education was provided. The evaluation of this intervention showed that when parents of children infants with sickle cell trait were given education during and after pregnancy versus just after pregnancy, their knowledge retention was greater and follow up rates for post-natal education were greater [42] .
Policy and Guideline-Based Interventions: Eight of twenty-five interventions (32%) were categorized as Policy and Guideline-Based Interventions [42] [44] - [50] (Table 3).These interventions mainly focus on introducing mandated screening for sickle cell trait in order to increase awareness of status in the
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Table 3. Sickle Cell Trait Typology of United States Interventions from 2000-2024: Policy or Guideline-Based Interventions (n = 8).
United States. These policies and guidelines either target newborns [42] , athletes [44] [47] [48] [49] or those in the military [45] [46] and therefore are not inclusive of all populations of people who potentially have a sickle cell trait. Given the inherent tailored approach, these interventions were successful in increasing testing and/or awareness of sickle cell trait in individuals. Specifically, universal newborn screening was implemented in the United States in 2006 [20] , screening for all NCAA Division One athletes was implemented in 2010 [49] , and screening of all people entering the military was implemented in 2020 [46] . The Universal Newborn Screening Policy is reported to identify all cases of sickle cell trait [20] , but there have been gaps in whether these test results are accurately communicated to carriers or recorded in medical records [53] . The Uniformed Services University Expert Panel was successful in introducing new terminology, exploring areas of controversy surrounding having a sickle cell trait, and exploring methods for mitigating risk and adverse outcomes for members of the military and athletes [45] . One study that examined the policy that all military recruits be tested for sickle cell trait upon entering the military reported that over a ten year study period, around fifteen deaths were averted among military recruits with sickle cell trait [46] . While the 1972 Sickle Cell Anemia Program does not report increase in knowledge or awareness on an individual level, the program funded 41 sickle cell centers/clinics, more than 250 general screening programs, and 69 research grants/contracts to support screening, education, and counseling [50] . Finally, mandated sickle cell trait screening for NCAA Division One athletes identified over 2,000 sickle cell trait carriers over a four year period and estimates identifying 530 new sickle cell trait carriers per year [44] [47] [48] [49] .
Sickle Cell Trait Organization-Led Interventions: Six of twenty-five interventions (24%) were Sickle Cell Trait Organization-Led Interventions [29] [30] [31] [32] [51] [52] (Table 4). Half of these (n = 3) focused on providing sickle cell trait testing across the United States [29] [32] [52] , while the other three interventions aimed to provide sickle cell trait education [30] [31] [51] . The three interventions that provided sickle cell education provided education to people who already knew they had a sickle cell trait, and each intervention targeted a different community: young athletes (high school and younger) [51] , parents of newborns with a sickle cell trait in California [31] , and people with a sickle cell trait across the United States [30] . Only one of these interventions was not nationwide [31] . Two of these six interventions had effectiveness or outcomes reported, the first being the As One Foundation Operation Hydration Program, which provided an 80% increase in awareness among participants [51] . The second is the 23 and Me Sickle Cell Carrier Status Awareness Program, and while it does not report how many people total they have tested for a sickle cell trait, 19,000 people with a sickle cell trait in their database consented to be part of a study that determined people with sickle cell trait are at higher risk of experiencing pulmonary embolism [52] [54] . All of the interventions are still active, except one that ended in 2022 but continues to make educational materials accessible on their website [30] .
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Table 4. Sickle cell trait typology of United States interventions from 2000-2024: sickle cell trait organization-led interventions (n = 6).
4. Discussions
The results of this typology lend insight to the strategies, activities, and messages of existing interventions that have either enhanced the awareness of sickle cell trait or that have contributed to the confusion around it. Grouping interventions into categories trough a typology summarizes current efforts in order to inform future ones through identification of successful intervention components and exposing inconsistencies in messaging. The successes and lessons learned that result from this typology will contribute to scientifically correct and consistent interventions to arm people with a sickle cell trait with the education to make informed healthcare decisions, thus collectively promoting positive health behaviors. Sickle cell trait interventions have historically been overshadowed by comprehensive SCD interventions; people with a sickle cell trait are in need of this investigation and subsequent further focus in this area and for organizations that serve people with sickle cell trait to be more effective in their collective approach to educating not only patients, but providers and health systems for a more holistic approach to education and awareness.
Our findings show that the current interventions that aim to increase education and awareness of sickle cell trait in the United States fall into four categories: Educational, Combined Screening and Educational, Policy and Guideline-Focused, and Sickle Cell Trait Organization-Led. Each of these efforts focuses on either encouraging people who do not know their sickle cell trait status to get tested, or to educate people who do know their status about the potential complications of having a sickle cell trait. The interventions most commonly focused on reproduction and newborn screening [20] [31] [35] [41] [42] , especially the possibility of having a child with SCD and safety around athletics [44] - [49] [51] . Following, we summarize the findings and explore the connection to existing context and application in practice.
The Educational Interventions provides insight into the methods that currently exist to close knowledge gaps in sickle cell trait, which is important given the lack of knowledge in the sickle cell trait community. The interventions in this category suggest further sickle cell trait awareness and educational efforts could be delivered effectively in many modalities, including virtual or in-person formats and in individual or group settings. While most of these interventions happened pre-COVID-19 pandemic, the shift to virtual education strategies has increased and the effectiveness of virtual education to change behavior and practice is important to consider when designing interventions in a post-COVID-19 context [55] . Additionally, these interventions offer various ways to evaluate the effectiveness of educational interventions, specifically by using surveys, focus groups, or interviews to assess baseline knowledge pre-intervention and educational attainment post-intervention though focus less on how knowledge will be translated to practice behaviors. The drawback of these Educational Interventions is that they only target those who already know they have a sickle cell trait, leaving out those who do not know their status, further warranting more efforts in this area.
The Combined Screening and Educational Interventions allow a deeper understanding of the importance of providing education to a patient once they screen positive for a sickle cell trait to ensure they know how this result impacts their health. When this type of intervention is implemented, awareness increases in two ways: more people in general will know their sickle cell trait status, and more people will be aware of how having a sickle cell trait impacts their life. Combining screening and educational interventions allows for larger intervention impact [56] . By alerting more people to know their sickle cell trait status, not only will more individual deaths and health complications be avoided, but more people will be able to make informed decisions about reproduction, as SCD can occur if one or both parents have a sickle cell trait [57] . In many of these interventions, brief education was provided and then the patient was referred to further counseling, either through their primary care or a genetic counselor. It is important for interventions to consider partnerships with these types of providers, as connecting these patients with long-term care after a positive test is important for ongoing monitoring and education [58] . The outcomes of these interventions provide insight into patients’ motivations to pursue follow-up education and preferences for receiving this education once they receive a positive screening, which is an essential consideration for future interventions for maximum impact and sustainability.
While the Policy and Guidelines show that these types of interventions are effective in increasing the number of people who know their status, without proper follow-up counseling or education, there is a disconnect how people apply that information. This is exemplified by universal newborn screening for a sickle cell trait in the United States. While all newborns born in the United States are screened for a sickle cell trait at birth, only 16% of people know their sickle cell trait status [21] . Without investment in ensuring test results are accurately charted in a newborn’s medical chart (which was shown to not be done consistently despite universal testing [20] ) and ensuring follow-up education and counseling, testing-based interventions often do not improve awareness of sickle cell trait nearly as much as they could [59] . Focusing on the outcome of identifying more people who have a sickle cell trait, the Policy and Guideline category was found to be most successful, likely because policies are the most expansive in reach. For example, screening all Division One college athletes identified over 2000 sickle cell trait carriers over a four-year period, and identifies around 530 new sickle cell trait carriers per year [49] . Identifying sickle cell trait among athletes is especially important given the most serious complications of sickle cell trait (e.g. rhabdomyolysis and exercise-related sudden death) are occur by strenuous exercise and dehydration [14] . This exemplifies the necessity of education following a positive test; without education, athletes with a sickle cell trait will not know how to decrease their risk of these serious complications (proper hydration, building exercise intensity slowly, etc. [14] ), or the symptoms to watch for when exercising.
The interventions led by Sickle Cell Trait Organizations provide insight into what the organizations that are closest to the problem are doing to address the lack of awareness in the space, however, also highlight the gaps in what they can accomplish given less resources. These interventions sometimes addressed certain groups within the target population, for example, athletes or parents of newborns, but many interventions aimed to increase the amount of people who do not know their status across the United States. Unlike the other intervention categories in this typology, the interventions led by Sickle Cell Trait Organizations aim to remove barriers to testing by making testing free and convenient with consistent education or referral to education after a positive test results. This suggests the organizations addressing sickle cell trait understand the importance of education to increase awareness. The most prominent theme that emerged in this research was that messaging about sickle cell trait and the related health complications is inconsistent and even conflicting across interventions and organizations. For example, messaging on one website states “A trait IS NOT A DISEASE and will not cause your baby to become ill” [32] . Meanwhile, messaging on another website “[Sickle cell trait] coupled with physical rigor and lack of hydration, could be fatal [∙∙∙] Over 20 high-school and collegiate football players’ deaths have been related to sickle cell trait since 2000, making exertional sickling the leading cause of death in football players in recent history” [51] . The two statements drastically conflict and suggest that interventions for sickle cell trait in general, and the messaging that form their foundation, need to be more consistent in the education they provide.
There are limitations to this typology process. First, is that we do not include information on length of intervention or sustainability efforts for the intervention. Second, our focus was on awareness and education efforts and not on medical interventions, which may provide more evidence of effective approaches. Since our focus was to enhance messaging and awareness efforts these other medical interventions fell outside the scope of review. This is an important feature to understand effective approaches but was not available for many of the studies we found. Finally, this scoping review and typology only included interventions from the peer-reviewed literature or from existing websites in the sickle cell trait space. There is likely institutional knowledge and other efforts that the field would benefit from learning for example communities of practice, tailored forums, and other information sharing may be other areas to explore to enhance the findings of this typology.
The main lessons from this typology, as summarized by the above descriptions, are that many people do not know their sickle cell trait status in the United States, and of those who do know their status, many do not know the possible complications of having a sickle cell trait or how to decrease their risk [21] [39] . There is a lack of consistency in messaging across interventions whether delivered by credible healthcare institutions or national organizations, which can result in lack of education and awareness and confusion around sickle cell trait. Further, for an intervention to be comprehensive and effective a variety of strategies should be employed. The four categories in this typology largely remain siloed; interventions do not often employ the methods of the other categories to create a holistic approach to sickle cell trait. For example, mandated testing policies provide the recipient with a positive test, but without follow-up education, the person will not understand what precautions they will need to take to avoid potential complications. These lessons learned are important to inform future interventions in sickle cell trait. Specifically, interventions must have scientifically accurate and consistent messaging in order to ensure all people know whether they have a sickle cell trait, and what that means for their life. As such, the research approach and typology allowed us to compile what exists in the field and distill it into recommendations for practice. These recommendations should be applied to both existing and future interventions to increase awareness and education of sickle cell trait in the United States:
1) Facilitation of meaningful partnerships between research and practice to disseminate scientifically accurate information. Many of the messages that exist within interventions online are scientifically inaccurate or conflicting from source to source. By strengthening partnerships between research and practice, interventions will be infused with more scientifically accurate and consistent information [60] .
2) Implementation of consistent and accurate messaging around sickle cell trait among organizations to avoid confusion and lead to health promoting behaviors. Once interventions in the sickle cell trait field are infused with scientifically sound messages, organizations implementing these interventions will be able to provide messaging that is consistent and not conflicting so all people with sickle cell trait clearly understand what this means for their life and the behavior changes to make to avoid health complications [61] .
3) Utilization of multi-pronged strategies for interventions to ensure a comprehensive approach. Interventions that utilize a multi-pronged approach are more successful in promoting awareness, education, and behavior change [56] . When organizations are creating interventions, they should consider utilizing interventions that use multiple approaches, such as combined screening and educational interventions.
4) Expansion of education efforts for medical students, providers, health systems, and patients to ensure bidirectional education and communication around sickle cell trait. This research shows that while one way to increase awareness and education is by reaching people who have a sickle cell trait, another important way is to reach medical students, healthcare providers, and health systems, who have been identified as having a lack of knowledge in this space [16] [17] . By educating these populations, we create a more holistic way of ensuring the public is more informed about having a sickle cell trait by introducing education and awareness from multiple angles. In order to improve education, awareness, and health outcomes of people with a sickle cell trait, there needs to be improvement in provider knowledge and the information that they provide their patients, as patients often rely heavily on their providers for information about their health [62] .
5) Implementation of flexible communication strategies to ensure that messages reach those who need it and are tested by the target population. All interventions created to increase awareness and education about sickle cell trait should be accompanied by flexible communication strategies for dissemination of the interventions. Organizations implementing interventions should focus on refining the messages within those interventions and testing them with the target population [63] through various methods such as focus groups and interviews. Finally, organizations should create communication and dissemination strategies assisted by a media planning guide to get the messages to those who need to hear them through communication avenues such as websites, multi-media advertising strategies, and communication campaigns.
Having historically been overshadowed by interventions aimed at SCD, interventions aimed at increasing education and knowledge of sickle cell trait deserve focus and recommendations to move the field forward. This typology, which is the first to focus on sickle cell trait interventions, will provide sickle cell trait organizations and other implementers recommendations for scientifically accurate and consistent messages to holistically educate patients and providers. Additionally, this typology will provide organizations the support to design and implement comprehensive sickle cell trait awareness initiatives across the field. This education and intervention guidance will ultimately encourage health promoting behaviors and health behavior change to an overlooked population.
Funding Disclosures
There are no disclosures to report.