Hematologist encounters among Medicaid patients who have sickle cell disease

Horiuchi, Sophia; Zhou, Mi; Snyder, Angela; Paulukonis, Susan

doi:10.1182/bloodadvances.2022007622

Cited by 10 publications

(10 citation statements)

References 19 publications

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“…Clinical registries draw primarily from patient populations that are under the care of specialists such as hematologists. Adults with SCD have been found to have low rates of encounters with hematologists; therefore, they are likely to be missed in these data sources 37. To track the health care and outcomes of people with this severe, life-threatening disease should be a top state and federal priority.…”

Section: Discussionmentioning

confidence: 99%

COVID-19 Infection and Outcomes in Newborn Screening Cohorts of Sickle Cell Trait and Sickle Cell Disease in Michigan and Georgia

Paulukonis

Snyder

Smeltzer

et al. 2023

Journal of Pediatric Hematology/Oncology

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The sickle cell mutation increases morbidity in those with sickle cell disease (SCD) and potentially sickle cell trait, impacting pulmonary, coagulation, renal, and other systems that are implicated in COVID-19 severity. There are no population-based registries for hemoglobinopathies, and they are not tracked in COVID-19 testing. We used COVID-19 test data from 2 states linked to newborn screening data to estimate COVID outcomes in people with SCD or trait compared with normal hemoglobin. We linked historical newborn screening data to COVID-19 tests, hospitalization, and mortality data and modeled the odds of hospitalization and mortality. Georgia’s cohort aged 0 to 12 years; Michigan’s, 0 to 33 years. Over 8% of those in Michigan were linked to positive COVID-19 results, and 4% in Georgia. Those with SCD showed significantly higher rates of COVID-19 hospitalization than the normal hemoglobin Black cohort, and Michigan had higher rates of mortality as well. Outcomes among those with the trait did not differ significantly from the normal hemoglobin Black group. People with SCD are at increased risk of COVID-19–related hospitalization and mortality and are encouraged to be vaccinated and avoid infection. Persons with the trait were not at higher risk of COVID-related severe outcomes.

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Section: Discussionmentioning

confidence: 99%

COVID-19 Infection and Outcomes in Newborn Screening Cohorts of Sickle Cell Trait and Sickle Cell Disease in Michigan and Georgia

Paulukonis

Snyder

Smeltzer

et al. 2023

Journal of Pediatric Hematology/Oncology

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“…Understanding this context helps us contextualize the results -this is likely a group of individuals who have better support and connection to information than others in the sickle cell disease community. For example, the high proportion of respondents with a connection to a hematologist (78%) contradicts recent evidence that adults with sickle cell in two states have low rates of connection with such specialists, nding that 56% in California and 34% in Georgia had no encounters with a hematologist over a three-year period (Horiuchi et al 2022).…”

Section: Discussionmentioning

confidence: 90%

Support and information needs identified in a survey of adults with sickle cell disease

Paulukonis

Coker

Brocks-Capla³

et al. 2023

Preprint

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Newborn screening and early treatment for sickle cell disease has dramatically improved outcomes for impacted children, but adults with the disease live with chronic and acute pain, organ damage, a high risk of mortality, and diminished quality of life. Adults’ access to quality care and knowledgeable providers is limited compared to other genetic diseases. Adults living with the disease and associated with two community-based organizations were asked to complete a survey describing their health education and information needs with regard to sickle cell, as well as their challenges finding supportive and knowledgeable care. Nearly 600 responses were received. Respondents describe their information needs, such as the best care providers nearby, insurance options, connections to support groups. Questions also address the utility of different types of support services, as ranked by respondents. Respondents also described actions they take when experiencing a vaso-occlusive/pain crisis and answered an open-ended question about their greatest needs to improve quality of life. Findings suggest that support groups along with knowledgeable and compassionate care are important identified needs to those living with sickle cell disease. Respondents noted reliance on friends and family as well as social media for information about their disease. They reported that the emergency room was the primary source of medical care sought when an acute pain crisis happens. These survey results highlight the many unmet needs for adults living with sickle cell disease.

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“…This study's limitations include its cross‐sectional design, small sample size, and restriction to AYA with SCD who successfully transition to adult SCD care. This patient population is distinguished by prior and likely future access to expert disease‐specific medical care that is not universally available [34]. Our survey's findings may not extend to this out‐of‐care population.…”

Section: Discussionmentioning

confidence: 98%

Family planning needs of young adults with sickle cell disease

Linton

Williams

Early

et al. 2023

eJHaem

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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.

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Hematologist encounters among Medicaid patients who have sickle cell disease

Cited by 10 publications

References 19 publications

COVID-19 Infection and Outcomes in Newborn Screening Cohorts of Sickle Cell Trait and Sickle Cell Disease in Michigan and Georgia

COVID-19 Infection and Outcomes in Newborn Screening Cohorts of Sickle Cell Trait and Sickle Cell Disease in Michigan and Georgia

Support and information needs identified in a survey of adults with sickle cell disease

Family planning needs of young adults with sickle cell disease

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