المؤلفون: Elizabeth A. Linton, Elizabeth C. Williams, Macy L. Early, Elizabeth Prince, Rosalyn W. Stewart, Sophie Lanzkron, Lydia H. Pecker

المصدر: eJHaem, Vol 4, Iss 3, Pp 587-594 (2023)

مصطلحات موضوعية: anemia, reproductive health services, reproductive health, sexual health, sickle cell, transition to adult care, Diseases of the blood and blood-forming organs, RC633-647.5

الوصف: Abstract Sexual and reproductive healthcare standards for adolescents and young adults with sickle cell disease (SCD) are not established. A total of 50 young adults entering adult SCD care completed a Family Planning Survey assessing sexual and reproductive health needs from March 2019 to July 2020. Clinical data were abstracted from respondents’ electronic medical records. Linear and logistic regression was applied to explore associations between clinical characteristics and survey results. Few respondents (8%) wished to be pregnant in the coming year, and 46% answered yes to at least one of four needs assessment questions. Those who were not employed full time were more likely to endorse needing help with getting sickle cell trait testing for a partner (ORadj = 9.59, p‐value = 0.05). Contraceptive use was associated with having an obstetrician–gynecologist (OR = 6.8, p‐value = 0.01). Young adults with SCD entering adult care have diverse reproductive health needs, highlighting opportunities to provide multidisciplinary, SCD‐specific reproductive healthcare.

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/2688-6146Test

الوصول الحر: https://doaj.org/article/74afd3a8890a4bf094092aaca53fd4c7Test

المؤلفون: Macy L. Early, A. Kinga Malinowski, Marissa Solow, Ahizechukwu Eke, Nadine Shehata, Sana Saif Ur Rehman, Kevin H.M. Kuo, Lydia H. Pecker

المصدر: Blood. 140:8305-8307

مصطلحات موضوعية: Immunology, Cell Biology, Hematology, Biochemistry

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::23a845367e7673e1fa41ff60e6eb1043Test
https://doi.org/10.1182/blood-2022-162334Test

المؤلفون: Macy L. Early, A. Kinga Malinowski, Marissa Solow, Ahizechukwu Eke, Sana Saif Ur Rehman, Nadine Shehata, Kevin H.M. Kuo, Lydia H. Pecker

المصدر: Blood. 140:1951-1953

مصطلحات موضوعية: Immunology, Cell Biology, Hematology, Biochemistry

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::d10f2582e667a39479cb90c70f914f62Test
https://doi.org/10.1182/blood-2022-162349Test

المؤلفون: Paul C. Loeser, Macy L. Early, C. Patrick Carroll, Shannon Carroll, Ashley Lauriello, Sophie M. Lanzkron, Elizabeth J. Prince, Lydia H. Pecker

المصدر: Blood. 140:2568-2569

مصطلحات موضوعية: Immunology, Cell Biology, Hematology, Biochemistry

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::4eccda4363242f5cbcd8b6a3ac12b5a0Test
https://doi.org/10.1182/blood-2022-156459Test

المؤلفون: Macy L. Early, Ahizechukwu C. Eke, Alison Gemmill, Sophie Lanzkron, Lydia H. Pecker

المصدر: JAMA Network Open. 6:e2254552

مصطلحات موضوعية: General Medicine

الوصف: ImportancePregnancy outcomes are historically poor among people with sickle cell disease (SCD) in the US, most of whom have Black race. Whether outcomes have improved is unknown.ObjectiveTo tabulate adverse pregnancy outcomes among patients with SCD, comparing outcomes of deliveries among Black people with SCD with those of Black people without SCD and a control non-Black population, and to measure the association of racial disparities with adverse outcomes in SCD pregnancies.Design, Setting, and ParticipantsThis cross-sectional study was a secondary analysis involving data from National Inpatient Sample, a nationally representative sample of 20% of acute hospital admissions in the US, between 2012 and 2018. The data set included all admissions with codes for delivery of a pregnancy among people aged 11 to 55 years. Data were analyzed from September 2021 to August 2022.ExposuresSCD, racial disparities.Main Outcomes and MeasuresSevere maternal morbidity (SMM) as measured by the US Centers for Disease Control and Prevention’s index alongside other outcomes; multiple logistic regression was used to compare the odds for adverse pregnancy outcomes.ResultsThe sample included 5 401 899 deliveries, including 3901 deliveries among people with SCD and 742 164 deliveries among people with Black race. Compared with the non-Black control group, patients with SCD and Black patients were younger (mean [SD] age: SCD, 27.2 [5.9] years; Black, 27.1 [6.1] years vs 28.7 [5.9] years) and more likely to have public insurance (SCD, 2609 deliveries [67.3%]; Black, 496 828 deliveries [65.4%] vs 1 880 198 deliveries [40.8%]). The maternal mortality rate in deliveries among people with SCD was 26 times greater than in the non-Black control group and more than 10 times greater than among Black pregnant people without SCD (Per 10 000 deliveries: SCD 13.3; 95% CI, 5.7-31.2; Black race, 1.2; 95% CI, 1.0-1.5; non-Black control 0.5; 95% CI, 0.5-0.6). Compared with the control group, SCD deliveries had higher odds of SMM (adjusted odds ratio [aOR], 7.22; 95% CI, 6.25-8.34; P P P Conclusions and RelevanceIn this large cross-sectional study of pregnancy outcomes in people with SCD, the risk for SMM was higher compared with deliveries among people without SCD, especially for thrombotic events, organ failure, and death. Racial disparities were associated with adverse outcomes. Our findings compel scientific, clinical, and political effort to improve outcomes for pregnant people with SCD.

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::dc1aad4c9ae228f7fe350b6b6741ca0dTest
https://doi.org/10.1001/jamanetworkopen.2022.54552Test

المؤلفون: Macy L. Early, Ahizechukwu C. Eke, Alison Gemmill, Sophie Lanzkron, Lydia H. Pecker

المصدر: JAMA Network Open. 6:e2254545

مصطلحات موضوعية: General Medicine

الوصف: ImportancePregnancy in sickle cell disease (SCD) is high risk, but whether prenatal anemia, which is treatable with red blood cell transfusions, is a mediator associated with adverse pregnancy outcomes (APOs) is not known.ObjectiveTo compare rates and odds of severe maternal morbidity (SMM) and other APOs in pregnancies among individuals with SCD vs those without SCD but with prenatal anemia.Design, Setting, and ParticipantsThis cross-sectional study was conducted using data from 2012 to 2018 from the National Inpatient Sample, a nationally representative sample of 20% of acute hospital admissions in the United States. All admissions with codes for delivery of a pregnancy among people aged 11 to 55 years were included. Only admissions coded with Black race were included. Data were analyzed from September 2021 through August 2022.ExposuresPrenatal anemia and SCD.Main Outcomes and MeasuresSMM was tabulated per the Center for Disease Control and Prevention SMM Index alongside other APOs. Multiple logistic regression was used to compare the odds for APOs and risk ratios (RRs) to compare rates of APOs.ResultsAmong 764 455 total delivery admissions among patients identified as Black (mean [SD] age at delivery, 27.00 [6.08] years), 3200 deliveries were coded with maternal SCD, 34 808 deliveries were coded with maternal anemia, and 726 447 deliveries were control. Most patients were publicly insured (499 060 [65.4%]). For most outcomes, including SMM and mortality per 10 000 deliveries, the SCD group had higher rates (SMM: 5.9%; 95% CI, 5.1%-6.8%; maternal mortality: 13.0 deaths; 95% CI, 4.9 to 35.0 deaths) than anemia (SMM: 2.1%; 95% CI, 2.0%-2.3%; maternal mortality: 0.9 deaths; 95% CI, 0.3 to 2.8 deaths) or control groups (SMM: 1.1%; 95% CI, 1.0%-1.1%; maternal mortality: 1.2 deaths; 95% CI, 1.0 to 1.5 deaths). SCD (adjusted odds ratio [aOR], 5.51; 95% CI, 4.71-6.45) and anemia groups (aOR, 2.00; 95% CI, 1.84-2.17) had higher adjusted odds of SMM compared with the control group. However, for many complications associated with ischemia or abnormal placentation, CIs of aORs for SCD and anemia groups overlapped (eg, eclampsia: aOR, 2.74; 95% CI, 1.51-4.96 vs aOR, 1.40; 95% CI, 1.08-1.81). For these complications, RRs for SCD vs anemia were between 1.0 and 2.1 (eg, eclampsia: 1.76; 95% CI, 0.93-3.32). For complications associated with thrombosis or SCD-specific pathologies, rates and aORs were greater for the SCD vs anemia group. For these complications, RRs were between 3.70 and 10.90. For example, rates of acute respiratory distress syndrome, including acute chest syndrome, were 56 of 3144 deliveries (1.8%) vs 122 of 34 686 deliveries (0.4%), and the RR was 4.99 (95% CI, 3.65-6.84).Conclusions and RelevanceThis study found that risks associated with prenatal anemia and SCD were similar for many APOs, especially those associated with ischemia and abnormal placentation, suggesting that prenatal anemia may be a mediator associated with pregnancy risk in individuals with SCD.

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::b12d3292803bd8738e7fe155e2e56e36Test
https://doi.org/10.1001/jamanetworkopen.2022.54545Test

المؤلفون: Macy L. Early, Elizabeth Linton, Allison Bosch, Timothy Campbell, Felicia Hill‐Briggs, Lydia H. Pecker, Eboni I. Lance, Sophie Lanzkron

المصدر: British journal of haematology. 198(2)

مصطلحات موضوعية: Adult, Cognition, Humans, Cognitive Dysfunction, Pilot Projects, Hematology, Anemia, Sickle Cell, Neuropsychological Tests, Mental Status and Dementia Tests

الوصف: Adults with sickle cell disease (SCD) are at risk for cognitive impairment, which causes significant morbidity. Guidelines support routine cognitive screening, but no screening test is validated in this population. We explored the Montreal Cognitive Assessment (MoCA) as a possible screening test in SCD. We administered the MoCA; a literacy test, the Wide Range Achievement Test, fourth edition (WRAT-4); and a health literacy test, the Shortened Test of Functional Health Literacy in Adults (S-TOFHLA) to adults with SCD and gathered clinical variables through chart review. Spearman's rho, Mann-Whitney, and Kruskal-Wallis tests and quantile regression models were used. Among our sample of 49 adults with SCD, the median MoCA score was 25.0 [interquartile range (IQR) 22.0-28.0]. Higher educational attainment was associated with MoCA scores (p = 0.001). In multivariable models, MoCA scores were associated with S-TOFHLA (p = 0.001) and WRAT-4 Reading (p = 0.002) scores, and overt stroke (p = 0.03) at the median. This pilot study adds to the limited literature of cognitive screening tests in adults with SCD and demonstrates a relationship between MoCA scores and measures of literacy and health literacy. The MoCA is a promising option for briefly screening for cognitive impairment in adults with SCD, though further study is needed to confirm its validity.

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6f2b5cbebb1d4014ae8934971fd5b2abTest
https://pubmed.ncbi.nlm.nih.gov/35385886Test

المؤلفون: Sajya M. Singh, Jennifer W. Mack, Emily Riehm Meier, Rachel J. Strodel, Isabel V. Lake, Lydia H. Pecker, Macy L. Early, Mindy S. Christianson, James A. Saba, Jake A Ruddy, Sophie Lanzkron

المصدر: J Assist Reprod Genet

مصطلحات موضوعية: Adult, Male, medicine.medical_specialty, Health Knowledge, Attitudes, Practice, media_common.quotation_subject, education, Reproductive medicine, Health literacy, Disease, Anemia, Sickle Cell, Interviews as Topic, Patient Education as Topic, Multidisciplinary approach, Surveys and Questionnaires, Genetics, medicine, Humans, Assisted Reproduction Technologies, Genetics (clinical), Genetic testing, media_common, medicine.diagnostic_test, Obstetrics and Gynecology, General Medicine, Reproductive Medicine, Feeling, Family medicine, Trait, Female, Psychology, Developmental Biology, Patient education

الوصف: PURPOSE: People with sickle cell disease (SCD) or trait have many reproductive options, some of which decrease the chance of passing SCD to children, including in vitro fertilization with preimplantation genetic testing (IVF + PGT). Few are aware of these options, and educational materials are needed. This study aimed to develop an accessible, non-directive patient education material about reproductive options for those with SCD or trait via a process that incorporated stakeholders from the SCD community. METHODS: Multidisciplinary stakeholders guided development and revision of a novel pamphlet. Researchers applied health literacy scales to measure pamphlet understandability. We interviewed nine patients with SCD and six multidisciplinary clinicians to evaluate the pamphlet. Interviews were recorded, transcribed, and coded by a five-member team who developed a codebook and proposed themes that were revised by all research team members. Feedback was incorporated into a revised pamphlet. RESULTS: A two-page pamphlet describing reproductive options for people with SCD including IVF + PGT was acceptable to key stakeholders, including people with SCD. Material about this complex topic met health literacy standards, including being written at a 5th grade level. Patients reported feeling hopeful after reviewing the pamphlet, and participants considered the pamphlet useful, clear, and appropriate for distribution in clinics and online. CONCLUSIONS: Though awareness of reproductive options for those with SCD or trait is low, patients and providers find a novel pamphlet about this topic acceptable and useful. Educational materials about complex topics including IVF + PGT can be written at a level understandable to the average American. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10815-021-02358-z.

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c39f29b69492f37fbfa9741d73c4609fTest
https://europepmc.org/articles/PMC8866599Test/

المؤلفون: Arik V. Marcell, Macy L. Early, Mindy S. Christianson, Cathleen Lawson, Lydia H. Pecker, Priyanka Kumar

المصدر: J Assist Reprod Genet

مصطلحات موضوعية: 0301 basic medicine, Adult, medicine.medical_specialty, media_common.quotation_subject, Reproductive medicine, Fertilization in Vitro, Reading level, Literacy, 03 medical and health sciences, 0302 clinical medicine, Patient Education as Topic, Pregnancy, Reading (process), Genetics, medicine, Humans, Family, Genetic Testing, Assisted Reproduction Technologies, Genetics (clinical), Preimplantation Diagnosis, Genetic testing, media_common, Internet, 030219 obstetrics & reproductive medicine, Literacy skill, medicine.diagnostic_test, business.industry, Obstetrics and Gynecology, General Medicine, Embryo Transfer, United States, 030104 developmental biology, Reproductive Medicine, Reading, Family medicine, Professional association, Female, business, Developmental Biology, Patient education

الوصف: PURPOSE: In vitro fertilization with preimplantation genetic testing (IVF+PGT-M) reduces the risk of having a child affected by a heritable condition, yet only one-third of eligible patients are aware of this reproductive option. Access to education materials written at appropriate literacy levels could raise patients’ awareness, but there is a mismatch between patient reading ability and the literacy demand of most materials. This study aimed to systematically identify written education materials on IVF+PGT-M and evaluate their literacy levels. We hypothesized that materials would fail to meet standards set by the Joint Commission and Centers for Disease Control and Prevention (CDC). METHODS: To identify patient education materials about IVF+PGT-M from academic databases and public-facing sources, an environmental scan was performed. Materials were analyzed using three validated scales: Simple Measure of Gobbledygook, Patient Education Materials Assessment Tool, and Clear Communication Index. RESULTS: Seventeen patient education materials about IVF+PGT-M were identified from patient education databases, a consumer search engine, and professional organizations. The median reading level was 14.5 grade, median understandability was 74.2%, and median comprehensibility was 73.3%. CONCLUSIONS: For most American adults, materials about IVF+PGT-M are not readable, understandable, or clear. The Joint Commission requires patient education materials be written at or below 5th grade reading level and the CDC recommends a 90% minimum score for comprehensibility. No evaluated material met these guidelines. Patient education materials that exceed average American literacy skills may perpetuate disparities in the utilization of IVF+PGT-M. Materials that communicate this complicated subject at an understandable level are needed.

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ce29477cd55c436691be720e48e07f01Test
https://europepmc.org/articles/PMC7468013Test/