Background Public health programs are tasked with educating the community on health topics, but it is unclear whether these programs are acceptable to learners. Currently, these programs are delivered via a variety of platforms including in-person, virtually, and over the telephone. Sickle cell trait (SCT) education for parents of children with this trait is one of many education programs provided by the Ohio Department of Health. The novel SCTaware videoconference education program was developed by a research team after central Ohio’s standard program transitioned from in-person to telephone-only education during the COVID-19 pandemic. Objective Our objectives were to investigate the acceptability of the format and engagement with the SCTaware education and assess parental worry about having a child with SCT before and after receiving SCTaware. Methods This was a single-center, prospective study of English-speaking parents of children <3 years of age identified to have hemoglobin S trait by newborn screening. Parents who previously received SCT education by telephone, were able to be contacted, and had access to an electronic device capable of videoconferencing were eligible to complete surveys after receiving the virtual SCTaware education program. The SCTaware educator also completed a survey to assess participant engagement. Data were summarized descriptively and a McNemar test was used to compare parental worry before and after receiving SCTaware. Results In total, 55 participants completed follow-up surveys after receiving standard SCT telephone education and then completing SCTaware. Most (n=51) participants reported that the SCTaware content and visuals were very easy to understand (n=47) and facilitated conversation with the educator (n=42). All of them said the visuals were respectful and trustworthy, helped them understand content better, and that their questions were addressed. Nearly two-thirds (62%, n=34) reported that the pictures appeared very personal and applied to them. The educator noted most participants (n=45) were engaged and asked questions despite having to manage distractions during their education sessions. Many participants (n=33) reported some level of worry following telephone-only education; this was significantly reduced after receiving SCTaware (P<.001). Conclusions Our results suggest that SCTaware is acceptable and engaging to parents. While telephone education may make SCT education more accessible, these findings suggest that many parents experience significant worry about their child with SCT after these sessions. A study to evaluate SCTaware’s effectiveness at closing parents’ SCT knowledge gaps is ongoing.
Background Hydroxyurea is the primary treatment for sickle cell anemia (SCA), yet real‐world implementation in high‐income settings is suboptimal. Variation in prescribed hydroxyurea dose and patient adherence in these settings can both affect actual exposure to hydroxyurea. Quantifying the contributions of hydroxyurea dose and medication adherence to the relationship between hydroxyurea exposure and hematologic parameters could inform strategies to optimize exposure and improve outcomes. Procedure We evaluated the relationship between hydroxyurea exposure, defined by average prescribed dose and adherence, and hematologic parameters using data from children with SCA who were enrolled in two prospective hydroxyurea adherence studies. Hydroxyurea adherence was assessed by video directly observed therapy or electronic pill bottle and medication administration record. Average prescribed dose was abstracted from prescriptions in patients’ electronic medical record. Participants with a hydroxyurea exposure >20 mg/kg/day and ≤20 mg/kg/day were included in the higher and lower exposure groups, respectively. Results Forty‐five participants were included in the analysis (56% male; median age 12 years [range 2–19]; 98% Black). Higher exposed participants (n = 23) were prescribed a higher dose (27.2 vs. 24.4 mg/kg/day, p = .002) and had better adherence (0.92 vs. 0.71, p ≤ .001) compared to lower exposed participants (n = 22). Higher exposure was associated with higher fetal hemoglobin (p = .04) and mean corpuscular volume (p = .02). Conclusions Higher hydroxyurea exposure is associated with improved hematologic parameters in the high‐income setting and is affected by both prescribed dose and adherence. Future studies are needed to optimize both adherence and hydroxyurea prescribing and confirm that increasing exposure improves clinical outcomes in this setting.
BACKGROUND Public health programs are tasked with educating the community on pertinent public health topics, but it is unclear how effective these programs are and if they are acceptable for learners. Currently, these programs are delivered via a variety of platforms including in-person, virtually, and over the telephone. Sickle cell trait (SCT) education for parents of children with this trait is one of many education programs provided by the Ohio Department of Health. The novel SCTaware videoconference education program was developed by a research team after central Ohio’s standard program transitioned from in-person to telephone-only during the COVID-19 pandemic. OBJECTIVE Our objective was to investigate acceptability of format and engagement with the SCTaware education, and to assess parental worry about having a child with SCT before and after receiving SCTaware. METHODS This was a single center, prospective study of English-speaking parents of children <3 years of age identified to have Hemoglobin S-trait by newborn screening. Parents who previously received SCT education by telephone, who were able to be contacted, and had access to an electronic device capable of videoconferencing were eligible to complete surveys after receiving the virtual SCTaware education program. The SCTaware Educator also completed a survey to assess participant engagement. Data were summarized descriptively and a McNemar’s test was used to compare parental worry before and after receiving SCTaware. RESULTS Fifty-five participants completed follow-up surveys after receiving standard SCT telephone education and then completing SCTaware. Most (n=51) participants reported that the SCTaware content and visuals were very easy to understand (n=47) and facilitated conversation with the Educator (n=42). All said the visuals were respectful and trustworthy, helped them understand content better, and that their questions were addressed. Nearly two-thirds (62%) reported that the pictures appeared very personal and applied to them. The Educator noted most participants (n=45) were engaged and asked questions (n=45), despite having to manage distractions during their education sessions. Many participants (n=33) reported some level of worry following telephone-only education; this was significantly reduced after receiving SCTaware (p < 0.0001). CONCLUSIONS Our results suggest that SCTaware is acceptable and engaging to parents. While telephone education may make SCT education more accessible, these findings suggest that many parents experience significant worry about their child with SCT after these sessions. A study to evaluate SCTaware’s effectiveness at closing parents’ SCT knowledge gaps is ongoing.
Background Nearly 8% of African Americans carry sickle cell trait (SCT) and approximately 2000 infants in the United States are born with sickle cell disease (SCD) annually. SCT knowledge is necessary for individuals with SCT to make informed reproductive decisions since they are at risk of having children with SCD. Despite state programs that inform parents of their child's SCT status via telephone call, >80% of adults with SCT do not know their status. This may be because many parents have low health literacy (HL), low baseline SCT knowledge, and/or may not achieve high sustained SCT knowledge after non-standardized phone encounters. The SCTaware education program was designed to improve SCT education to close knowledge gaps that may exist after telephone-only education. It also aims to increase parents' SCT status awareness and their ability to inform their affected children in the future. Objectives The objectives of this interim analysis were to assess central Ohio parents' SCT knowledge after being educated about their child's SCT status by telephone (standard of care) and to explore if SCTaware improves parents' knowledge immediately and one month after receiving it. Methods A multidisciplinary team (hematologists, a genetic counselor, HL experts, SCT educators, parent stakeholders, and visual design experts) developed SCTaware, a videoconference-administered education program that is delivered by a trained educator and includes SCT knowledge objectives, HL-informed communication strategies (e.g., teach-back), visuals scoring highly for understandability, and access to narrated post-education review materials. Through electronic medical record review, we identified English-speaking biological parents of infants with SCT who were informed of their child's SCT by telephone. Adult parents who were able to be contacted by telephone were invited to participate if they did not have SCD or a child with SCD, had not received SCT education in central Ohio for another child, were not (or partner was not) currently pregnant, and had access to an electronic device capable of videoconferencing. After informed consent, parents reported their and their child's SCT status, completed a demographic survey, a HL assessment, and the published Sickle Cell Trait Knowledge Assessment (SCTKA) consisting of eight questions. Participants then received SCTaware and repeated the SCTKA and report of their and their child's SCT status immediately and one month later. SCTKA scores <75% correct were considered low. Data were summarized descriptively. Linear mixed effects models with random intercept for each parent were used to assess scores longitudinally. Results Of the 297 children with SCT whose parent received telephone education between March 2020-April 2021, 114 had a parent who was able to be contacted, 22 were ineligible when contacted, and five declined participation because they reported having adequate knowledge. To date, 63 parents have enrolled, 54 have completed baseline surveys (Table 1), 44 have completed SCTaware, and 35 have completed the one-month follow-up. Following telephone education, 44% of participants had high SCT knowledge. Participants' mean SCTKA scores post-telephone education did not significantly differ whether they had received telephone education ≤3 months or >3 months before enrolling in the study (64% correct vs. 71% correct, p=0.30). Of those who had completed SCTaware, 42 (95%) achieved high SCT knowledge immediately after. Of those who have completed the one-month follow-up, 94% continue to have high knowledge. Participants with low HL had significantly lower SCTKA scores post-telephone education but those with high and low HL achieved and maintained high sustained knowledge one month after receiving SCTaware (Figure 1). Discussion Our interim analysis shows that over half of parents, especially those with low HL, have low SCT knowledge after receiving education by telephone regarding their infant's diagnosis of SCT. SCTaware is a scalable tool that could be widely implemented as an initial program or as a follow-up to telephone education if final analyses confirm that SCTaware leads to sustained knowledge gains. Future studies, however, need to determine parent access to and satisfaction with SCTaware and if individuals use the knowledge gained to inform their reproductive decision-making and to inform their affected children. Figure 1 Figure 1. Disclosures No relevant conflicts of interest to declare.
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