Mortality in adults with sickle cell disease: Results from the sickle cell disease implementation consortium (SCDIC) registry Article Swipe
Franklin Njoku
,
Norma Pugh
,
Donald Brambilla
,
Barbara L. Kroner
,
Nirmish Shah
,
Marsha Treadwell
,
Robert W. Gibson
,
Lewis L. Hsu
,
Victor R. Gordeuk
,
Jeffrey Glassberg
,
Jane S. Hankins
,
Abdullah Kutlar
,
Allison A. King
,
Julie Kanter
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1002/ajh.27279
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1002/ajh.27279
The cause of death in people affected by sickle cell disease (SCD) is often challenging to define as prior studies have used retrospective or administrative data for analysis. We used a prospective longitudinal registry to assess mortality and clinical co‐morbidities among subjects enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry. At enrollment, we collected the following data: patient‐reported demographics, SCD phenotype, baseline laboratory values, comorbidities, and current medications. Subjects were followed for a median of 4.7 years before the present analysis. The relationship of clinical co‐morbidities (at time of enrollment) to mortality was determined using survival analysis, adjusting for SCD phenotype and gender. There was a total of 2439 people with SCD enrolled in the SCDIC registry. One hundred and twenty‐eight participants (5%) died during the observation period (2017–2022). Six people died from trauma and were excluded from further analysis. Proximate cause of death was unwitnessed in 17% of the deaths, but commonest causes of death include cardiac (18%), acute chest or respiratory failure (11%), sudden unexplained death (8%). Enrollment characteristics of the individuals who died ( n = 122) were compared to those of survivors ( n = 2317). Several co‐morbidities at enrollment increased the odds of death on univariate analysis. All co‐morbidities were included in a multivariable model. After backward elimination, iron overload, pulmonary hypertension, and depression, remained statistically significant predictors of the risk of death. SCD reduces life expectancy. Improved comprehensive and supportive care to prevent end‐organ damage and address comorbidities is needed for this population.
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Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1002/ajh.27279
- https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajh.27279
- OA Status
- hybrid
- Cited By
- 17
- References
- 39
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4392553169
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4392553169Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1002/ajh.27279Digital Object Identifier
- Title
-
Mortality in adults with sickle cell disease: Results from the sickle cell disease implementation consortium (SCDIC) registryWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
-
2024Year of publication
- Publication date
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2024-03-07Full publication date if available
- Authors
-
Franklin Njoku, Norma Pugh, Donald Brambilla, Barbara L. Kroner, Nirmish Shah, Marsha Treadwell, Robert W. Gibson, Lewis L. Hsu, Victor R. Gordeuk, Jeffrey Glassberg, Jane S. Hankins, Abdullah Kutlar, Allison A. King, Julie KanterList of authors in order
- Landing page
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https://doi.org/10.1002/ajh.27279Publisher landing page
- PDF URL
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https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajh.27279Direct link to full text PDF
- Open access
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YesWhether a free full text is available
- OA status
-
hybridOpen access status per OpenAlex
- OA URL
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https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajh.27279Direct OA link when available
- Concepts
-
Medicine, Population, Acute chest syndrome, Disease, Cause of death, Internal medicine, Univariate analysis, Disease registry, Pediatrics, Sickle cell anemia, Intensive care medicine, Multivariate analysis, Environmental healthTop concepts (fields/topics) attached by OpenAlex
- Cited by
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17Total citation count in OpenAlex
- Citations by year (recent)
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2025: 10, 2024: 7Per-year citation counts (last 5 years)
- References (count)
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39Number of works referenced by this work
- Related works (count)
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10Other works algorithmically related by OpenAlex
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| abstract_inverted_index.among | 41 |
| abstract_inverted_index.cause | 2, 144 |
| abstract_inverted_index.chest | 163 |
| abstract_inverted_index.data: | 59 |
| abstract_inverted_index.death | 4, 146, 158, 170, 201 |
| abstract_inverted_index.often | 14 |
| abstract_inverted_index.prior | 19 |
| abstract_inverted_index.those | 186 |
| abstract_inverted_index.total | 109 |
| abstract_inverted_index.using | 97 |
| abstract_inverted_index.years | 79 |
| abstract_inverted_index.(11%), | 167 |
| abstract_inverted_index.(18%), | 161 |
| abstract_inverted_index.2317). | 192 |
| abstract_inverted_index.Sickle | 46 |
| abstract_inverted_index.assess | 36 |
| abstract_inverted_index.before | 80 |
| abstract_inverted_index.causes | 156 |
| abstract_inverted_index.damage | 243 |
| abstract_inverted_index.death. | 230 |
| abstract_inverted_index.define | 17 |
| abstract_inverted_index.during | 127 |
| abstract_inverted_index.median | 76 |
| abstract_inverted_index.model. | 212 |
| abstract_inverted_index.needed | 248 |
| abstract_inverted_index.people | 6, 112, 133 |
| abstract_inverted_index.period | 130 |
| abstract_inverted_index.sickle | 9 |
| abstract_inverted_index.sudden | 168 |
| abstract_inverted_index.trauma | 136 |
| abstract_inverted_index.(SCDIC) | 51 |
| abstract_inverted_index.Disease | 48 |
| abstract_inverted_index.Several | 193 |
| abstract_inverted_index.address | 245 |
| abstract_inverted_index.cardiac | 160 |
| abstract_inverted_index.current | 69 |
| abstract_inverted_index.deaths, | 153 |
| abstract_inverted_index.disease | 11 |
| abstract_inverted_index.failure | 166 |
| abstract_inverted_index.further | 141 |
| abstract_inverted_index.gender. | 105 |
| abstract_inverted_index.hundred | 121 |
| abstract_inverted_index.include | 159 |
| abstract_inverted_index.present | 82 |
| abstract_inverted_index.prevent | 241 |
| abstract_inverted_index.reduces | 232 |
| abstract_inverted_index.studies | 20 |
| abstract_inverted_index.values, | 66 |
| abstract_inverted_index.Abstract | 0 |
| abstract_inverted_index.Improved | 235 |
| abstract_inverted_index.Subjects | 71 |
| abstract_inverted_index.affected | 7 |
| abstract_inverted_index.backward | 214 |
| abstract_inverted_index.baseline | 64 |
| abstract_inverted_index.clinical | 39, 87 |
| abstract_inverted_index.compared | 184 |
| abstract_inverted_index.enrolled | 43, 115 |
| abstract_inverted_index.excluded | 139 |
| abstract_inverted_index.followed | 73 |
| abstract_inverted_index.included | 208 |
| abstract_inverted_index.registry | 34 |
| abstract_inverted_index.remained | 222 |
| abstract_inverted_index.subjects | 42 |
| abstract_inverted_index.survival | 98 |
| abstract_inverted_index.Proximate | 143 |
| abstract_inverted_index.adjusting | 100 |
| abstract_inverted_index.analysis, | 99 |
| abstract_inverted_index.analysis. | 28, 83, 142, 204 |
| abstract_inverted_index.collected | 56 |
| abstract_inverted_index.commonest | 155 |
| abstract_inverted_index.following | 58 |
| abstract_inverted_index.increased | 197 |
| abstract_inverted_index.mortality | 37, 94 |
| abstract_inverted_index.overload, | 217 |
| abstract_inverted_index.phenotype | 103 |
| abstract_inverted_index.pulmonary | 218 |
| abstract_inverted_index.registry. | 52, 119 |
| abstract_inverted_index.survivors | 188 |
| abstract_inverted_index.Consortium | 50 |
| abstract_inverted_index.Enrollment | 172 |
| abstract_inverted_index.determined | 96 |
| abstract_inverted_index.enrollment | 196 |
| abstract_inverted_index.laboratory | 65 |
| abstract_inverted_index.phenotype, | 63 |
| abstract_inverted_index.predictors | 225 |
| abstract_inverted_index.supportive | 238 |
| abstract_inverted_index.univariate | 203 |
| abstract_inverted_index.challenging | 15 |
| abstract_inverted_index.depression, | 221 |
| abstract_inverted_index.end‐organ | 242 |
| abstract_inverted_index.enrollment) | 92 |
| abstract_inverted_index.enrollment, | 54 |
| abstract_inverted_index.expectancy. | 234 |
| abstract_inverted_index.individuals | 176 |
| abstract_inverted_index.observation | 129 |
| abstract_inverted_index.population. | 251 |
| abstract_inverted_index.prospective | 32 |
| abstract_inverted_index.respiratory | 165 |
| abstract_inverted_index.significant | 224 |
| abstract_inverted_index.unexplained | 169 |
| abstract_inverted_index.unwitnessed | 148 |
| abstract_inverted_index.elimination, | 215 |
| abstract_inverted_index.longitudinal | 33 |
| abstract_inverted_index.medications. | 70 |
| abstract_inverted_index.participants | 124 |
| abstract_inverted_index.relationship | 85 |
| abstract_inverted_index.comorbidities | 246 |
| abstract_inverted_index.comprehensive | 236 |
| abstract_inverted_index.demographics, | 61 |
| abstract_inverted_index.hypertension, | 219 |
| abstract_inverted_index.multivariable | 211 |
| abstract_inverted_index.retrospective | 23 |
| abstract_inverted_index.statistically | 223 |
| abstract_inverted_index.(2017–2022). | 131 |
| abstract_inverted_index.Implementation | 49 |
| abstract_inverted_index.administrative | 25 |
| abstract_inverted_index.comorbidities, | 67 |
| abstract_inverted_index.twenty‐eight | 123 |
| abstract_inverted_index.characteristics | 173 |
| abstract_inverted_index.co‐morbidities | 40, 88, 194, 206 |
| abstract_inverted_index.patient‐reported | 60 |
| cited_by_percentile_year.max | 99 |
| cited_by_percentile_year.min | 98 |
| corresponding_author_ids | https://openalex.org/A5010079454 |
| countries_distinct_count | 1 |
| institutions_distinct_count | 14 |
| corresponding_institution_ids | https://openalex.org/I39422238 |
| sustainable_development_goals[0].id | https://metadata.un.org/sdg/3 |
| sustainable_development_goals[0].score | 0.8500000238418579 |
| sustainable_development_goals[0].display_name | Good health and well-being |
| citation_normalized_percentile.value | 0.98546571 |
| citation_normalized_percentile.is_in_top_1_percent | True |
| citation_normalized_percentile.is_in_top_10_percent | True |