Intervention Name

Strategies or Activities

Setting

Target Population

Outcomes

Program Status

1. The CHOICES Intervention: An internet -based, tailored, multimedia education program about reproductive options and consequences [35]

(2015)

· Participants completed a computer-based questionnaire (SCKnowIQ) before the intervention to assess baseline knowledge. The development of this intervention was based on the Kolb Experiential Learning Theory. A video, audio, or text-based case study or simulation was used so the participant could experience a scenario that included reproductive issues due to SCD or sickle cell trait.

· Participants reflected on the simulated experience from different perspectives, then the participants were given information about SCD and sickle cell trait and reproductive health issues that are related.

· The participants were shown videos of other couples who experienced decision making, and consequences related to reproduction with SCD and sickle cell trait.

University of Illinois Sickle Cell Clinic and University of Illinois Pediatric Sickle Cell Clinic.

Participants who had SCD or a sickle cell trait, were able to have children, and were 18 - 35 years old.

Study findings provide important insights for designing a national trial of the CHOICES intervention focusing on subjects whose partner status puts them at risk for having a child with SCD. At baseline, 114 (48.7 %) participants reported having partners who would not put the couple at risk for their children inheriting SCD. Of the 116 (49.6 %) at-risk participants, a higher proportion of those who were in the CHOICES group chose partners that reduced their risk by the last visit than the text-based group (p  = 0.04).

This intervention is active, to complete in 2025.

2. Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and sickle cell trait [21] (2006)

· Targeted education was provided based on pre-intervention assessments in order to evaluate knowledge, perceptions and the effectiveness of different sources of information about sickle cell trait and sickle cell disease (SCD) and to determine individual knowledge of sickle cell trait status.

· A series of focus groups were conducted with the goals of: 1) identifying barriers to sickle cell trait follow-up; 2) gathering perceptions of the general awareness of SCD; 3) generating potential solutions to the problem of low rate of trait follow-up.

· Neighborhood surveys were conducted with the goals of: 1) determining the extent of community members' exposure to different sources of information about SCD and sickle cell trait in the past year; 2) evaluating community knowledge about SCD and sickle cell trait; 3) determining if individuals actually knew their own trait status and 4) evaluating the effectiveness of different sources of information about SCD and sickle cell trait in improving knowledge.

Northern California and the Northern California Comprehensive Sickle Cell Center in Oakland, CA, in 2006.

28 individuals participated in three focus groups (healthcare providers, people affected by SCD or have a sickle cell trait and community members). Surveyors interviewed 282 respondents within their neighborhoods.

Common themes across the focus groups included the limited general awareness of SCD and the sickle cell trait, the emphasis on the benign nature of sickle cell trait rather than on future implications, and the need for public health education campaigns about SCD and sickle cell trait involving media strategies. The majority of community survey respondents (n = 243, 86.2%) had correct general knowledge about the genetic basis and severity of SCD, but only 16% (n = 45) knew their own trait status. When respondents had received information about SCD from friends and acquaintances, they were three times more likely to know their sickle cell trait status, compared with respondents who had not received information from a personal source (p < 0.01).

This intervention is no longer active.

3. Sickle cell trait knowledge and health literacy in caregivers who receive in-person sickle cell trait education [36]

(2017)

· A trained educator provided in-person sickle cell trait education to caregivers of referred infants with a sickle cell trait.

· Participants were recruited and completed a health literacy assessment and a sickle cell trait knowledge assessment (SCTKA) before and after receiving education.

· Caregivers repeated the SCTKA again after ≥ 6 months if they could be contacted.

In-person training at Nationwide Children’s Hospital in Ohio from August 2015 to July 2016.

113 primarily English -speaking caregivers of infants with hemoglobin S-trait.

· (38.1%) percent of 113 caregivers had high SCTKA scores (≥75%) before education but 90.3% achieved high scores after education.

· Caregivers with low SCTKA scores after education had significantly lower health literacy and baseline SCTKA scores compared to those with higher scores after education.

· At ≥6 months, caregivers’ scores were significantly higher (p = 0.014) than baseline, but only 73.3% scored ≥ 75%.

· Results suggest that caregivers’ baseline sickle cell trait knowledge is low, improves with in-person education but may decline with time. Caregivers who do not achieve high sickle cell trait knowledge after education had lower health literacy and baseline knowledge.

This intervention informed the creation of SCT aware, which is active: See Intervention #4.

4. A health literate approach to address health disparities: a virtual program for parents of children with sickle cell trait (2022) [37]

· Central Ohio’s Sickle Cell Trait Education Program was delivered in-person.

· The education program included having a parent of a child with SCT meet with an educator who provided verbal education using supporting visual materials.

· The program did not have a formal curriculum but aimed to provide comprehensive SCT education to enable parents to learn about SCT and explain it to others.

· Evaluators determined if health literacy affected understanding of concepts in order to create a health literacy-informed virtual training.

Education delivered in person in Central Ohio in 2019.

Seven English -speaking parents, of which three had limited health literacy.

· During the evaluation, parents asked few questions; noted undefined technical terms, closed questions, key concept omission, and limited explanation of visuals scoring low for understandability, actionability, and clarity.

· The output of this study was a virtual sickle cell trait education program (SCT aware) for individual video conference delivery (knowledge objectives; plain language guide; health literacy-informed communication strategies; new visuals scoring highly for understandability, actionability, and clarity; narrated post-education version; standardized educator training).

SCTaware is ongoing in Central Ohio.

5. Closing Knowledge Gaps Among Parents of Children with Sickle Cell Trait: SCTaware program [38]

(2021)

· SCTaware, a video conference-administered education program was delivered by a trained educator after being developed by a multidisciplinary team.

· Parents reported their and their child's sickle cell trait status, completed a demographic survey, a health literacy assessment, and the published Sickle Cell Trait Knowledge Assessment (SCTKA) consisting of eight questions.

· The video conference included sickle cell trait knowledge objectives, health literacy-informed communication strategies (e.g. teach-back), visuals scoring highly for understandability, and access to narrated post-education review materials.

· After completing the program, parents repeated the SCTKA and report of their and their child's sickle cell trait status immediately and one month later.

Education delivered via video conference in Central Ohio between March 2020 and October 2021.

· Through electronic medical record review, English -speaking biological parents of infants with sickle cell trait who were informed of their child’s sickle cell trait by telephone were identified.

· 63 parents enrolled, 54 completed baseline surveys, 44 completed SCTaware, and 35 completed the one-month follow-up.

· Following telephone education, 44% of participants had high sickle cell trait 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 sickle cell trait 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.

At the time of the article (2021), the intervention was ongoing.

6. A Pilot Study to Explore Knowledge, Attitudes, and Beliefs about Sickle Cell Trait and Disease [39] (2009)

In-person questionnaires were administered to parents with a sickle cell trait and parents of a child with either SCD or a sickle cell trait to examine the knowledge, attitudes, beliefs, and disclosure patterns about sickle cell trait of parents. These participants receive care and education from three different sickle cell disease clinics.

Chicago, IL in 2009.

Parents were recruited from (1) the University of Chicago Sickle Cell Disease Clinic, where their children are patients; (2) the Sickle Cell Disease Association of Illinois (SCDAI); (3) a federally qualified health clinic affiliated with the University of Chicago; and (4) the University of Chicago postpartum inpatient unit.

· The study found that there is significant misinformation about what it means to be a carrier and its health and reproductive implications. Formal professional counseling is rare, especially for those families without an affected proband. Strategies to increase the utilization of counseling and improve genetic literacy are necessary.

· Fifty-three adults were interviewed, half (27) of whom had a child with SCD. There was significant misunderstanding about sickle cell inheritance (mean score, 68%), but parents who have a child with SCD have better knowledge compared to those without a child with SCD (78% vs 58%, p = 0.002).

· Respondents perceive minimal stigma associated with sickle cell trait.

· Individuals with a sickle cell trait rarely receive counseling or education outside of the family.

This intervention ended in 2009 and is no longer active.

7. Parents’ Experiences and Needs Regarding Infant Sickle Cell Trait Results [40] (2022)

· Parents were delivered their infant’s positive newborn screening results.

· This study explored parents’ experiences with and desires for sickle cell trait disclosure and counseling for their infants with a sickle cell trait identified via newborn screening.

· Parents of infants 2 to 12 months old with a sickle cell trait were recruited through a state newborn screening program for semi structured interviews to explore their experiences with and desires for sickle cell trait disclosure and counseling.

· Inductive thematic analysis was conducted.

Virginia, from January to August 2020.

Parents of infants 2 to 12 months were recruited through the Virginia newborn screening program.

· Parents report receiving their child’s sickle cell trait diagnosis in the early newborn period from their child’s doctor but indicate they received incomplete information.

· Opportunities exist in primary care pediatrics to better align sickle cell trait disclosure timing and counseling content with parent desires.

· Sixteen interviews were completed from January to August 2020.

· Five themes were identified: parent knowledge before child’s sickle cell trait disclosure, family planning, the dynamics of sickle cell trait disclosure and counseling, emotions and actions after sickle cell trait disclosure, and parent desires for the sickle cell trait disclosure and counseling process.

· Two primary parent desires were revealed. Parents want more information about sickle cell trait, particularly rare symptomatology, and they want sickle cell trait counseling repeated once the child approaches adolescence.

This intervention ended in 2020 and is no longer active.