Screening for sickle-cell trait in the emergency department

Wright, Seth W.; Zeldin, Marie H.; Wrenn, Keith; Miller, Otis

doi:10.1007/bf02599054

Cited by 13 publications

(10 citation statements)

References 7 publications

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“…Similar to previous research, the current study found that a majority of focus group participants did not know their personal SCT status or that of their spouse/partner and children (Midence et al 1994;Wright et al 1994). Fortytwo percent of the 35 participants knew their personal SCT status.…”

Section: Knowledge Of Sickle Cell Trait Statussupporting

confidence: 83%

“…Research among African-Americans indicates this population perceives SCD to be a serious disease and SCT screening an important intervention. However, studies have consistently demonstrated a lower than desired uptake of SCD education, inadequate knowledge regarding personal and family trait status, and a low perceived susceptibility of giving birth to a child with the disease (Acharya et al 2009;Gustafson et al 2007;Kladny et al 2005;Midence et al 1994;Treadwell et al 2006;Wright et al 1994). In this study, we examined general attitudes and beliefs regarding genetics and genetic testing including prenatal testing and newborn screening among a unique sample of African-American adults; we used this information as the foundation to more specifically assess attitudes and beliefs regarding SCD and perceived barriers to SCD education and awareness.…”

Section: Discussionmentioning

confidence: 99%

“…A limited number of studies have been conducted to examine African-Americans' knowledge and perception of SCD, SCT, personal and family trait status, and newborn screening for SCD. These studies have consistently demonstrated a significant lack of awareness regarding the difference between disease and trait status and how trait status increases the chance to have a child with disease (Acharya et al 2009;Gustafson et al 2007;Kladny et al 2005;Midence et al 1994;Treadwell et al 2006;Wright et al 1994). A 2006 study by Treadwell and colleagues examined knowledge and misconceptions about the disease among African-American community members in a large metropolitan area.…”

Section: Knowledge and Perception Of Sickle Cell Diseasementioning

confidence: 99%

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Attitudes and Beliefs of African‐Americans Toward Genetics, Genetic Testing, and Sickle Cell Disease Education and Awareness

Long

Thomas

Grubs

et al. 2011

Journal of Genetic Counseling

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Research among African-Americans indicates this population perceives sickle cell (SCD) to be a serious disease and sickle cell trait (SCT) screening an important intervention. However, studies have consistently demonstrated a lower than desired uptake of SCD education, inadequate knowledge regarding personal and family trait status, and a low perceived susceptibility of giving birth to a child with the disease. We examined general attitudes and beliefs regarding genetics and genetic testing including prenatal testing and newborn screening; we used this information as the foundation to more specifically assess attitudes and beliefs regarding SCD and perceived barriers to SCD education and awareness. Thirty-five African-American adult men and women participated in one of four focus groups. Thematic analysis identified that both prenatal testing and newborn screening are acceptable forms of genetic testing. Based largely on their personal experiences, participants possessed an understanding of the natural progression of SCD but had a limited understanding of the inheritance and probable risk of giving birth to a child with the disease. Barriers to education and greater awareness of SCD were classified as personal, familial, and societal. Community based interventions focused on sharing the stories of individuals with first-hand experiences with SCD should be considered.

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Section: Knowledge Of Sickle Cell Trait Statussupporting

confidence: 83%

Section: Discussionmentioning

confidence: 99%

Section: Knowledge and Perception Of Sickle Cell Diseasementioning

confidence: 99%

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Attitudes and Beliefs of African‐Americans Toward Genetics, Genetic Testing, and Sickle Cell Disease Education and Awareness

Long

Thomas

Grubs

et al. 2011

Journal of Genetic Counseling

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“…6 Like in our study, Gallo, Jae, and Darbari found a lack of awareness of IVF/PGT but a desire for more information once it was introduced. Consistent with the general population, 17,18,26,27 8 or via other medical evaluation. As previously stated, NCAA-mandated SCT testing has been criticized as a lost opportunity for not requiring genetic counseling for those with SCT.…”

Section: Discussionmentioning

confidence: 98%

Reproductive intentions in mothers of young children with sickle cell disease

Schultz

Tchume‐Johnson

Jackson

et al. 2020

Pediatric Blood & Cancer

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Background Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy associated with morbidity and mortality. We sought to understand family planning intentions of parents of young children with SCD including the awareness of three reproductive options (adoption, in vitro fertilization with egg/sperm donation [IVFD], in vitro fertilization [IVF] with preimplantation genetic testing [IVF/PGT]) to decrease the risk of having a child with SCD. Procedure Qualitative, semistructured, one‐on‐one interviews with 18 female parents of young children with SCD at an urban, tertiary care pediatric hospital. Results Half of the parents knew their hemoglobinopathy status or their partner's status before pregnancy. Eight parents chose to have no further children because of fear of SCD in another child. Awareness of reproductive options prior to study enrollment was limited. After brief introduction, 7 parents would consider adoption, 2 IVFD, and 10 IVF/PGT. Desire for a biological child, fear of parental jealousy, ethical or religious considerations, and cost affected the acceptability of these options. Participants universally wanted information about reproductive options available to others prior to pregnancy. Conclusions There is limited awareness and variable acceptability of alternative reproductive options available to decrease the risk of a future child having SCD. Participants universally endorsed the need for education regarding hemoglobinopathy status, SCD, and reproductive options prior to pregnancy because for many participants having a child with SCD affected their reproductive intentions. Educational interventions to ensure informed reproductive decision making should be sensitive to desires for a biological child, and ethical and financial considerations.

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“…We have demonstrated a difference in awareness of SCT status between men and women that has previously been reported in the literature. Wright et al 12 studied a convenience sample of 147 African-Americans attending and Accident and Emergency Department. Only 31% claimed to be aware of their SCT status and women were more likely than men to report that they knew their SCT status.…”

Section: Discussionmentioning

confidence: 99%

Effectiveness of antenatal screening for sickle cell trait: the impact on women’s self-report of sickle cell trait status

Knight‐Madden

Reid

Younger

et al. 2012

Pathogens and Global Health

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Objectives: The sickle gene frequency in the Jamaican population has not changed over a generation. It is unknown whether routine antenatal screening for sickle cell trait (SCT) has affected women's knowledge of their SCT status. The aim of this study was to compare the prevalence of self-reported SCT in parous women to the prevalence in nulliparous women, men and to the observed prevalence of SCT measured in an antenatal clinic. Methods: All participants in the nationally representative Jamaica Health and Lifestyle Survey 2008 were asked whether they had the SCT. The impact of gender, age, educational attainment, geographical location, and pregnancy on self-reported SCT were assessed. The prevalence of SCT in women attending a large antenatal clinic concurrently was compared to that reported by women of child-bearing age in the lifestyle survey. Results: Self-report significantly underestimated the prevalence of SCT (2.9% versus 10.1%, P,0.001). Those with secondary education were more likely than those with presecondary education (P50.01) and women more likely than men (3.2% versus 1.1%, P50.001) to report having SCT. Women who had been pregnant were no more likely than other women to report having SCT (3.1% versus 4.1%, P50.4). Conclusions: Attendance at antenatal clinic where SCT screening is routine, is not associated with increased self-report of SCT. Screening programs must ensure that, as well as technically accurate screening, there is effective communication of the results of screening for SCT to those tested to help reduce the public health burden of sickle cell disease in tropical countries.

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Screening for sickle-cell trait in the emergency department

Cited by 13 publications

References 7 publications

Attitudes and Beliefs of African‐Americans Toward Genetics, Genetic Testing, and Sickle Cell Disease Education and Awareness

Attitudes and Beliefs of African‐Americans Toward Genetics, Genetic Testing, and Sickle Cell Disease Education and Awareness

Reproductive intentions in mothers of young children with sickle cell disease

Effectiveness of antenatal screening for sickle cell trait: the impact on women’s self-report of sickle cell trait status

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