Comprehensiveness, Inclusivity, and Accessibility of U.S. State Newborn Screening Public Health Websites
Didar Yahia, William Paterson University of New Jersey
Abstract:
Objective: Newborn Screening (NBS) is a public health initiative that screens treatable conditions early in the child’s life to either prevent the condition from worsening or make it manageable with interventions. Few studies assess the readability, inclusivity, and clarity of NBS websites as well as compare NBS programs across each state. This research assesses the content of information shared with parents on NBS websites. The purpose of this paper is to analyze the content, clarity, inclusivity, and reading level of NBS websites as well as the benefits and risks of NBS, and consequences of refusal of NBS shared on websites. The research will inform areas of improvement across NBS websites.
Methods: For each NBS website, the clarity and quality of their explanations for NBS were assessed. The accessibility of websites was quantitatively analyzed through the use of videos and brochures/infographics and the availability of multilingual resources. Lastly, the inclusivity was assessed quantitatively through images of minority populations on their websites.
Results: This research finds 94% of NBS websites properly describe its purpose. 66% of NBS websites are translatable into at least one language other than English . 76% of websites do not include images of minority populations. Only 18% of websites are below the 9.0 reading grade level. The model NBS website comes from California and was used to make recommendations to other NBS for improvement.
Introduction
Newborn Screening (NBS) is a public health initiative that tests infants for specific genetic conditions at birth. NBS is key to identifying treatable conditions early in the child’s life to prevent the condition from worsening. Soon after birth, a blood sample is taken from the newborn’s heel (Dried Blood Spot (DBS)). It is tested in a laboratory for genetic markers or metabolites for a fixed set of conditions and the results are shared with families within the first few weeks of birth (CDC, 2021). NBS is universal—all infants must be screened for a selection of genetic conditions.
All fifty states participate in NBS, but states vary in what genetic conditions they test for. The Department of Health and Human Services (HHS) provides Recommended Uniform Screening Panels (RUSP) for conditions they believe should be included on the NBS panel. Medicaid coverage for NBS, which passed in 1965, was a significant change as it ensured access for all families. It helped increase access to NBS for low-income families and underrepresented groups like African Americans (Sohn & Timmermans, 2019).
NBS has had a major impact on the health outcomes of U.S. children. One in 294 newborns is identified with genetic conditions, and some of these identifications lead to life-saving interventions (Brower et al., 2022). The lives of approximately 12,500 infants are saved, or their quality of life improved each year (Association for Diagnostics & Laboratory Medicine, 2020). Early detection of genetic conditions allows for early intervention. It is important to note, however, that genetic conditions tracked by NBS are treatable, not curable.
Literature Review
Having an understanding of NBS is important for the family’s experience with NBS. In a study of five hundred participants, 54.5% of participants living in medically underserved areas (MUAs) reported being aware of NBS. Only 49.5% of participants living in MUAs reported learning about NBS before the screening (Evans et al., 2020). Access to NBS education improves the quality of their experience with NBS because they will be more prepared when receiving results. A poor experience with NBS may make families distrustful of the healthcare system.
Patient education is an important component of NBS. One study found that there needs to be more resources put into educational interventions within prenatal clinics so parents can learn about the benefits, limitations, and consequences of opting out of NBS (Botkin et al., 2016). Education on NBS as late as the third trimester has been shown to have positive effects on maternal attitudes towards NBS (Botkin et al., 2016).
From the perspective of parents, roughly 70% of participants found that educational videos about NBS would be helpful and would be likely to engage with it (Evans et al., 2020). The study suggests that videos should be the preferred method of educating parents in order to increase engagement.
States use different approaches to diagnosing genetic disorders in newborns. Cystic fibrosis (CF) is identified by immunoreactive trypsinogen (IRT) levels. 25 states use IRT fixed cutoffs, while 26 regions use floating IRT cutoffs. Newborns must meet a specific threshold for a CF diagnosis with fixed IRT. A floating IRT is not a specific threshold and allows for more variability. As a result, infants in some states may be diagnosed with CF, while in others, they may not. The discrepancy between states makes it challenging to gather data and create policies that can benefit all states (Rehani et al., 2023).
There is a lack of literature that covers the differences in NBS programs across different states, such as variations in cost and policies. Likewise, there is a gap in the literature on each state’s NBS website and how accessible and comprehensive it is to families. Awareness and understanding of NBS is important to families.
Research Question/Purpose
For each state, there is a dedicated website for NBS for parents to reference. However, there has been little research discussing the content, accessibility, and readability of NBS websites. Furthermore, there are not many studies that compare the NBS programs across the different states. This research is directed towards analyzing the content, clarity, inclusivity, reading level, and options to opt out of NBS. The research question is:
What is the content of information directed at parents around NBS for each state?
The specific objectives are to:
Describe the content of parental education on NBS websites across the 50 US states.
Assess the accessibility, inclusivity, and readability of each NBS website.
Research Design
Data Collection Methods
This research used a mixed methods content analysis to best address the research question. The qualitative content analysis identified distinct themes emerging from the language and content of documents, websites, or other written materials (Pajo, 2018). This analysis can help address the gap in the literature on NBS education on state websites. Quantitative content analysis identified the thematic context in written materials (Pajo, 2018). It was key to identify trends within state NBS websites (e.g., inclusivity and accessibility to minority populations by availability of non-English languages and representation of minority populations). Insufficient amount of either of these can be a barrier to learning more about NBS.
The study also aimed to assess the accessibility of NBS education to families of underrepresented groups. An inductive approach analyzed the quality of NBS education for each state, and a deductive approach helped identify trends regarding inclusivity and representativeness across each state.
Data Sources and Unit of Analysis
The data was collected from the official NBS websites of all 50 states. The unit of analysis was the official NBS websites for each state. This included the home page, as well as the sub-pages for each state website.
Data Collection
The official state NBS websites were analyzed between January and March 2024. The pages were screenshotted to keep the content of the website consistent at that time.
Data Management and Analysis
The data for each state's NBS website was recorded on Google Sheets. They were organized by state. The data extracted from all webpages of each state’s NBS website were screenshotted and stored in a folder on Google Drive. Each image was titled according to the main topic of the webpage and the date of the screenshot. The data gathered from each state NBS website and put on Google Sheets were based on the following:
Link to NBS Website
Quantitative Analysis of Explanation of NBS:
Purpose of NBS: (1) conditions are treatable, (2) importance of early detection/intervention, and (3) consequences of no screening/treatment
Screening process: (1) when is blood taken, (2) timeframe for results, (3) method of contact for results, and (4) how DBS works
Exceptions to screening: any mention of option to opt out of screening
Brochures/Infographics: whether any brochures/infographics were used; number of resources that related to NBS
Videos: whether or not any brochures/infographics were used; number of videos related to NBS
Defining terms: (1) congenital, (2) intellectual disability, and (3) developmental disability
Webpages: number of languages available; frequencies of languages (translational options)
Inclusivity: number of images that are representative of minority populations
Qualitative Analysis of Explanation of NBS (Excerpts from websites/brochures)
Purpose of NBS
Screening Process
Exceptions to Screening
Qualitative Analysis of Reading Grade Levels: Analyze level by Word Document.
This project used both quantitative and qualitative content analysis. The qualitative analysis assessed the comprehensive, clarity, and accessibility of NBS to parents (by examining the content of webpages, reading levels, and use of multilingual resources). All of the dichotomous variables (Yes/No) were analyzed quantitatively such as use of brochures and videos. The quantitative analysis tracked the number of languages and images of minority populations. It helped assess the inclusivity of different racial/ethnic groups amongst the state NBS websites. Then, the project identified the model website by comparing states and provided recommendations to improve the understanding and accessibility of NBS websites for parents.
Results
Clarity of the Purpose of NBS
Websites were reviewed to determine if they clearly explained the purpose of NBS across their web pages (including FAQs) and brochures/infographics. Websites clearly explain the purpose of NBS if they state the following: (1) conditions are treatable, (2) refusal of screening/treatment can negatively impact a newborn’s quality of life, and (3) early detection and treatment of conditions are key. Across the websites, they will vary in how they organize and phrase their explanations. It is important to let families know that while conditions are not curable, there are treatment options to support newborns. Additionally, parents should know the consequences of not seeking care, such as disabilities or death.
The majority of websites (94%) gave a clear description of the purpose of NBS. For example, Hawaii’s website meets the above criteria for clarity of purpose. The website describes the importance of detecting and treating the condition(s) early and the consequences of not doing so (which includes developmental disabilities). Hawaii’s website (excerpt below) can serve as a good example of clearly communicating clarity of purpose because it highlights the importance of early screening, the outcomes of not receiving treatment, and that the conditions are specifically treatable.
“… some children are born with errors in their body chemistry that often show no outward symptoms. If these rare but serious conditions are not discovered early, poor physical and mental development, and even death, may occur. To make sure infants at risk are identified, the State of Hawaii requires screening of all newborns for certain genetic/metabolic disorders. If found and treated before symptoms appear, babies born with these disorders may lead a normal, healthy life” (Hawaii Department of Health, n.d.).
Florida also provides a good example of clarity of purpose, but it does not specify what the consequences of refusing screening/treatment are:
“Ask your baby’s doctor for newborn screening results. It could be a life changer. An important first step in new parenthood is to make sure your baby has all parts of the newborn screening testing completed with all results delivered. Early detection and treatment of health issues can help your baby grow up healthier” (Florida Health, n.d.).
Iowa’s NBS website clearly explains the purpose of NBS, however, it is more challenging to read than most other states. The language uses complex terms that families may not be familiar with. Also, the sentences are in general challenging to read which is reflected in its reading grade level. Both topics of defining terms and reading grade levels will be discussed in further detail later in the study. Iowa’s NBS website states:
“The purpose of screening for metabolic and congenital disorders in the newborn period is to enable the early identification of and intervention for at-risk individuals in order to prevent or lessen adverse health consequences such as intellectual and physical disability, serious illness, and death, with the overall objective of improving the quality of life for Iowans” (Iowa Health & Human Services, n.d.).
Some websites do not clearly explain the purpose of NBS on their home page but do in their brochures or frequently asked questions (FAQs) web page. While Pennsylvania’s website explains the purpose of NBS, it does not specify the outcomes of not receiving treatment for conditions. In contrast, Pennsylvania’s brochure brings attention to the severe consequences of not pursuing treatment for a newborn.
Pennsylvania’s website states:
“Newborn screening in Pennsylvania is completed to ensure every newborn is tested for metabolic, endocrine, hemoglobin, congenital heart disease, and hearing loss.... [Newborn screening] identifies babies with certain disorders which, without intervention, may permanently impact newborns and their families. Early recognition and treatment of most of these disorders leads to a better outcome for the newborn” (Pennsylvania Department of Health, n.d.).
Pennsylvania’s brochure on NBS states:
“Most babies look fine when born, but in very rare cases, can have a medical condition that causes serious illness, disability, or death. There are treatments available for these conditions, which is why screening is done. Most babies who are identified early can grow up to be healthy” (Pennsylvania Department of Health, n.d.).
Alternatively, an example of a website that does not clearly explain the necessity of prompt treatment/detection is Maine. While Maine highlights the importance of detection, treatment, and the consequences of not seeking treatment, it does not clarify that detection/treatment must be done early. The timeliness of treatment will significantly impact the progression of certain conditions. In contrast, Hawaii’s website makes it clear that early treatment of specific conditions could allow children to live a healthy life. Maine’s NBS website writes:
“By law, all newborns are tested for several rare but serious medical conditions. Babies with these conditions may look healthy at birth. If not treated, these conditions can cause health problems such as mental retardation, slow growth, and even death. With treatment, these problems may be prevented” (Maine Department of Health and Human Services, n.d.).
Clarity of the Screening Process
Only forty-six percent of NBS websites explained the screening process of NBS with clarity. Websites were judged to clearly explain the NBS process if they include the following: (1) blood spot is taken from the heel, (2) when is the blood taken, (3) how to find results, and (4) when can parents request the results.
Parents must understand the process of how the conditions are screened, especially because families may not be comfortable with blood being drawn (e.g., religious reasons). Families should know that blood is taken within 24 to 48 hours of birth, and it is important not to delay it past those times. Finally, since the results can impact their child’s health, parents should have timeframe to receive results and know who to ask to receive them. South Dakota’s website serves as a positive example of clearly explaining the process because parents are provided with the four criteria:
“A sample of blood is obtained by pricking the baby's heel... The sample is usually obtained on the day the baby is discharged from the hospital… The results of the tests are returned directly to your baby's doctors and the hospital where your baby was born. You can ask about the results when you take your baby in for a regular check-up” (South Dakota Department of Health, n.d.).
Alternatively, few NBS websites (such as Vermont and Pennsylvania) do not explain when the blood is drawn nor how or when parents can receive the results of the screening. For example, Vermont’s NBS websites states:
“A health care professional will take a small amount of blood from your baby's heel and send it to the laboratory” (Vermont Department of Health, n.d.).
Some states did not explain the screening process on their homepage. For example, Arkansas’ explanation is found in their FAQs. While they did not give a specific timeframe to receive results, they did suggest reaching out to the doctor:
“Q: How will my baby be tested? A few drops of blood are taken while your baby is still in the hospital nursery… If your baby is not born in the hospital, your baby will need to be tested by the seventh day of life in the doctor’s office or local health department. Q: How will I get the results of the test? Your baby’s doctor can give you the test results. Ask about results when you take your baby for a check-up” ("Arkansas Department of Health, n.d.).
Clarity of Exceptions to Screening
Sixty-six percent of NBS websites clearly explained exceptions to NBS giving them the option to opt out of the screening. For this study, websites that let parents know that there is an option to refuse screening were counted as clearly communicating this information. Some websites state that opting out requires a religious reason. Families must know that there is an option to refuse screening to ensure patient autonomy. Hawaii’s website can serve as an example:
“State law requires that every newborn baby be tested. You may refuse to have your baby tested if it is against your religion” (Hawaii Department of Health, n.d.).
While most states provide options to opt out of NBS, many websites do not mention any refusal forms or exceptions. Arkansas’ website let families know they can opt out of NBS but do not specify under what conditions they can refuse screening:
“Yes, but you will be required to assume responsibility for any adverse consequences to not having your baby screened” (Arkansas Department of Health, n.d.).
Defining Terms
NBS is complex and can be difficult for families to comprehend if unfamiliar medical terms are used. Therefore, states must define terms for parents. The study assesses the clarity of their explanation of NBS by whether they define the following terms: congenital, developmental disability, and intellectual disability.
Forty percent of NBS websites either used the aforementioned terms and defined them or did not use the terms at all. These terms may be challenging for families to understand if they lack genetic literacy. If terms are clearly defined, families can navigate the websites and other resources with less confusion. California briefly describes the definition of congenital within parenthesis:
“The NBS Program has expanded and now includes 80 different disorders, both genetic (passed down in families) and congenital (present at birth)” (California Department of Public Health, n.d.).
The remaining sixty percent of NBS websites do not use these terms at all, so they are classified as clear to families.
For example, Illinois’ NBS website uses the word “congenital,” but does not define it:
“[Newborn screening aims at the] early identification of babies affected with certain genetic, metabolic and congenital disorders” (Illinois Department of Public Health, n.d.).
Reading Grade Level
Online educational materials for families should be between the sixth and eighth-grade reading levels (Badarudeen & Sabharwal, 2010). The document insights feature from Word Documents was used to assess the Flesh-Kincaid Grade Level for NBS websites. The Flesh-Kincaid Grade Level is based on word per sentence and syllable per word.
Excerpts from clarity of the purpose of NBS were used to assess the reading level because this explanation was present on all the websites. The excerpts were obtained from the home pages for consistency. For instance, the reading level from a brochure can differ greatly from a website since brochures tend to be less complex than websites. Samples of under two hundred words and in one complete paragraph were selected. Given the complexity of NBS, the reading grade levels will typically be of a higher score. While it is challenging to explain genetic conditions without using medical terms, NBS websites should nevertheless be tailored for the comprehension of families/parents, not just providers.
Based on the reading grade levels, the NBS websites that scored the lowest are Vermont (5.7), Colorado (7.0), and Maine (7.7). North Carolina’s website has the highest grade level of 26.3, making it challenging for parents to read and comprehend. The phrasing of this sample suggests that it is not aimed at parents; instead, it is aimed at providers, public health professionals, or policymakers. North Carolina’s description of NBS includes multi-syllable words such as “population-based” (North Carolina Department of Health and Human Services, n.d.). It also includes a single sentence that is forty-six words in length. North Carolina’s homepage writes as follows:
“The Genetics and Newborn Screening Unit provides population-based services for newborn hearing screening and follow-up, newborn bloodspot screening follow-up, speech and hearing disorders, and genetic conditions through training, education, consultation, technical assistance and direct services in collaboration with a strong network of public and private partners” (North Carolina Department of Health and Human Services, n.d.).
Colorado’s website has a reading grade level of 7.0, which is much easier for parents/families to read. Colorado speaks directly to parents with words like “your” and clearly explains what NBS is. While Colardo uses similar number of words to North Carolina, these are spread across three sentences instead of one. Colorado’s NBS website reads:
“Newborn screening is a set of tests that check newborn babies for a variety of conditions. Most of these conditions can't be seen at birth but can be tested and can be treated if found early. Early detection is key to ensuring your baby’s health” (Colorado Department of Public Health and Environment, n.d.).
Multilingual Web Pages
NBS websites hold essential information about how genetic conditions can impact children’s health. For this reason, websites should have a translation feature for non-English languages for accessibility. Sixty-six percent of NBS websites translate their websites into one or more non-English languages. States vary in how many different languages are available. For instance, states like New Jersey and Connecticut use Google Translate which allows for translation into 133 languages, while Ohio uses Spanish, Somali, Chinese, and Arabic, specifically. Thirty-two percent of websites are only available in English (e.g., Alabama, Florida, and Michigan).
The language that appears the most on NBS webpages is Chinese (6.3%), followed by Spanish (5.7%) and Arabic (5.1%). This data might be skewed towards the Chinese language because some websites offer both “Chinese (simplified)” and “Chinese (traditional).”
Utilization of Videos
Videos are another educational tool used to reach families. Websites were assessed as to whether NBS-related videos were found and if those videos were available in non-English languages. This research states that websites must (1) have the video embedded into the website (2) and cannot be a link to another website (unless it is YouTube). The video must be embedded to the web page for easy access for families. A link to another website is a potential barrier because families will have to navigate another site.
Thirty-four percent of NBS websites meet the criteria for the use of videos. However, only eight percent of those websites include non-English. California’s website has the most videos available in the most languages. States like Louisiana and Minnesota have videos, but only in English. Most websites (sixty-six percent), like Washington, do not use videos relating to NBS at all.
Utilization of Infographics/Brochures
Infographics/brochures are easy methods to quickly educate parents/families on NBS. The content is usually presented in bullet points. Websites were assessed on whether they used brochures/infographics and if they were available in multiple languages. Since they are easy to read, they should be accessible in many different languages. Otherwise, key information about NBS would be inaccessible to non-English speaking families.
Seventy percent of NBS websites use brochures/infographics that are relevant to parents. However, there is variability between the number of different languages that are available on each state’s website. For example, New York’s NBS website offers the most multilingual resources in brochures/infographics by using fifteen different languages. While West Virginia and Texas’ websites have infographics/brochures only available in English. Some states, like Delaware, do not include any infographics/brochures relevant to NBS at all.
Inclusion of Images of Minority Populations
Images of minority populations help families of underrepresented backgrounds feel welcome in the NBS program. For that reason, the study assessed websites on whether they include one or more images of members of minority groups. Since it can be difficult to tell the race/ethnicity of a newborn, images of newborns were excluded. The images of adults had to be parents, rather than providers, to be counted. Lastly, video thumbnails were not included, since the video might include minority groups but not be on the thumbnail.
Only twenty-four percent of NBS websites used one or more images of minority populations. Seventy-six percent of states did not include any images of minority populations on their website, while twenty percent included only one image on their website. California’s website can serve as a strong example of an inclusive website because it uses the most images (3). In comparison, New York and New Jersey websites do not include images of minority populations that meet the criteria.
Model States
The identification of the model NBS websites can help inform other states on how to improve their comprehensiveness, accessibility, and inclusivity.
To determine the model state, three new variables needed to be created. The first equation assesses how clear their explanation of NBS is by taking the average of four sub-variables (purpose, screening process, exception to screening, and defining terms). Each of these sub-variables were assigned either 1 or 2 if they had a clear explanation or not, respectively. Therefore, an average closer to 1, is the clearest explanation of NBS.
The second equation assesses if websites used a variety of resources and were inclusive to minority populations. The equation uses the following sub-variables: multilingual websites, use of videos, multilingual videos, and use of brochures. Each of these variables were also assigned 1 or 2. The following is equation 2:
Finally, the third equation is an average of equation 1 and 2.
Through these equations, the model NBS websites is California because it has a consistent average of 1 in its explanation of NBS and range of sources. While their Flesh-Kincaid Grade Level is 13.1, overall, they meet the criteria for the explanation of NBS, offer a diversity of multilingual resources, and are the most inclusive to minority populations. South Dakota’s NBS website is another good model, but it does not include videos for non-English speakers. Overall, Alaska has the weakest website because at the time of this research, the website was under revision. Delaware and Maine’s websites were also of the weakest websites due to their lack of explanation of NBS and limited range of sources.
Discussion
This content analysis of NBS websites finds that there is a lot of variation among states’ websites. Since patient education is a vital component of NBS, presentation of this information to parents is important. For example, one study recommended more educational resources within prenatal clinics so parents can learn about the benefits, limitations and more regarding NBS (Botkin et al., 2016). Education on NBS as late as the third trimester has been shown to have positive effects on maternal attitudes towards NBS (Botkin et al., 2016). Therefore, NBS websites should aim to make their website more welcoming to families and parents.
Genetic counselors and physicians have also emphasized that a lack of prenatal and NBS education can contribute to poor psychosocial effects (O’Connor et al., 2018). NBS is complex, and most people are not aware of its purpose. For this reason, it is imperative that websites clearly explain NBS to reduce any uncertainty that parents may experience.
In another study of NBS information provision, roughly 70% of parents reported that educational videos about NBS would be helpful in their understanding of NBS (Evans et al., 2020). The study highlights parent perspectives and the importance of considering different modalities for NBS education. This shows the need for NBS websites to adopt not only videos but also have them available in multiple languages to ensure accessibility.
Limitations
Despite the informational value of this study, there are some limitations to take into consideration. Only one researcher analyzed NBS websites (which introduces bias). To remedy this, the study aimed to use specific criteria to keep data consistent across all the state’s NBS websites.
Another limitation of this study was trying to infer the race of images of minority populations. This becomes especially difficult when the images are of infants, so they were excluded from results. Despite the challenges, it is important for families to feel represented on NBS websites.
Implications for Practice
NBS websites can improve comprehensiveness, accessibility, and inclusivity by following model-state NBS websites like California. Recommendations include incorporating Google Translate into NBS websites and making brochures/videos in different languages to ensure accessibility to non- or limited-English speaking families. Another recommendation is to improve the clarity of explanations of the purpose, screening process, exceptions to screening, and defining terms to reducing parental stress. Also, it informs parents that they can opt out. Usually, families can refuse screening if they have religious reasons.
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