Evidence map›Paper›PMID 35445915›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2022

An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model.

Marsha J Treadwell, Swapandeep Mushiana, Sherif M Badawy, Liliana Preiss, Allison A King, Barbara Kroner, Yumei Chen, Jeffrey Glassberg, Victor Gordeuk, Nirmish Shah and 3 more

Open access · hybridAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
1.8field-weighted citation impact, top 14% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 1 synthesis or guideline pooled it, 14 citations in OpenAlex.

  1. Pooled it
  2. Article
  3. Article
  4. Article
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 10 institutions in 1 country.

Marsha J TreadwellUniversity of California San Francisco Benioff Children's Hospital Oakland, 747 52nd Street, Oakland, CA, 94609, USA. marsha.treadwell@ucsf.edu.ORCID http://orcid.org/0000-0003-0521-1846
Swapandeep MushianaMedical College of Georgia - Augusta University, Augusta, GA, USA.
Sherif M BadawyAnne & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Liliana PreissResearch Triangle International, Research Triangle Park, NC, USA.
Allison A KingWashington University St. Louis, St. Louis, MO, USA.
Barbara KronerResearch Triangle International, Research Triangle Park, NC, USA.
Yumei ChenUniversity of California San Francisco Benioff Children's Hospital Oakland, 747 52nd Street, Oakland, CA, 94609, USA.
Jeffrey GlassbergMount Sinai Hospital, New York, NY, USA.
Victor GordeukUniversity of Illinois Chicago, Chicago, IL, USA.
Nirmish ShahDuke University, Chapel Hill, NC, USA.
Angela SnyderGeorgia State University, Atlanta, GA, USA.
Theodore WunUniversity of California Davis, Sacramento, CA, USA.
Sickle Cell Disease Implementation Consortium (SCDIC)
RTI International · USUniversity of California, San Francisco · USAugusta University · USGeorgia State University · USMount Sinai Hospital · USNorthwestern University · USUniversity of California, Davis · USUniversity of Illinois Chicago · USUniversity of North Carolina at Chapel Hill · USWashington University in St. Louis · US

Funding

Data Coordinating Center for Sickle Cell Disease Implementation Consortium (SCDIC)U24HL133948 · NHLBI · RESEARCH TRIANGLE INSTITUTE · PI JACOBS, SARA RUBIN, KRONER, BARBARA L · 2016 to 2021
$7.3M
New York City Sickle Cell Implementation Science ConsortiumU01HL133997 · NHLBI · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · PI RICHARDSON, LYNNE D. · 2016 to 2021
$5.4M
The Implementation of Cognitive Screening and Educational Support to Improve Outcomes of Adolescents and Young Adults with Sickle Cell Disease: From Clinic to the Community and BackU01HL133994 · NHLBI · WASHINGTON UNIVERSITY · PI KING, ALLISON A · 2016 to 2021
$5.2M
Improving Sickle cell care in Adolescents & Adults in Chicago (ISAAC)U01HL134042 · NHLBI · UNIVERSITY OF ILLINOIS AT CHICAGO · PI GORDEUK, VICTOR R, HIRSCHTICK, JANA · 2016 to 2021
$5.1M
Improving SCD Care using Web-based Guidelines, Nurse Care Managers and Peer Mentors in Primary Care and Emergency Departments in Central North CarolinaU01HL133964 · NHLBI · DUKE UNIVERSITY · PI SHAH, NIRMISH R, TANABE, PAULA · 2016 to 2021
$4.8M
RE-aiming at Hydroxyurea Adherence for Sickle cell with mHealth (RE-HASH)U01HL133996 · NHLBI · ST. JUDE CHILDREN'S RESEARCH HOSPITAL · PI HANKINS, JANE SILVA, KLESGES, LISA M · 2016 to 2021
$4.6M
SC-Links - Linking the Sickle Cell Community, Providers and Systems to Improve Sickle Cell Disease CareU01HL134007 · NHLBI · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI TREADWELL, MARSHA J, VICHINSKY, ELLIOTT P · 2016 to 2021
$4.1M
NHLBI NIH HHS HL 133948NHLBI NIH HHS HL133964NHLBI NIH HHS HL133994NHLBI NIH HHS HL133997NHLBI NIH HHS HL134007NHLBI NIH HHS HL 134042NHLBI NIH HHS U01 HL133964NHLBI NIH HHS U01 HL133994NHLBI NIH HHS U01 HL133996NHLBI NIH HHS U01 HL133997NHLBI NIH HHS U01 HL134007NHLBI NIH HHS U01 HL134042NHLBI NIH HHS U24 HL133948
6 · The paper itself

Abstract

purposeTo examine the relations between patient-reported outcomes (PROs) within a conceptual model for adults with sickle cell disease (SCD) ages 18 - 45 years enrolled in the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) registry. We hypothesized that patient and SCD-related factors, particularly pain, and barriers to care would independently contribute to functioning as measured using PRO domains.

methodsParticipants (N = 2054) completed a 48-item survey including socio-demographics and PRO measures, e.g., social functioning, pain impact, emotional distress, and cognitive functioning. Participants reported on lifetime SCD complications, pain episode frequency and severity, and barriers to healthcare.

resultsHigher pain frequency was associated with higher odds of worse outcomes in all PRO domains, controlling for age, gender and site (OR range 1.02-1.10, 95% CI range [1.004-1.12]). Reported history of treatment for depression was associated with 5 of 7 PRO measures (OR range 1.58-3.28 95% CI range [1.18-4.32]). Fewer individual barriers to care and fewer SCD complications were associated with better outcomes in the emotion domain (OR range 0.46-0.64, 95% CI range [0.34-0.86]).

conclusionsStudy results highlight the importance of the biopsychosocial model to enhance understanding of the needs of this complex population, and to design multi-dimensional approaches for providing more effective interventions to improve outcomes.

Indexed as

Anemia, Sickle CellQuality of LifeAdolescentAdultHumansMiddle AgedPainPatient Reported Outcome MeasuresSurveys and QuestionnairesYoung AdultImplementation scienceModels—biopsychosocialPatient-reported outcome measuresSickle cell disease

Identifiers

PMID35445915
PMCPMC9356962
OpenAlexW4224219135

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.