Evidence map›Paper›PMID 33249456›Full record

ArticleJournal of pediatric psychology2021

Empirically Derived Profiles of Health-Related Quality of Life in Youth and Young Adults with Sickle Cell Disease.

Mary E Keenan, Megan Loew, Kristoffer S Berlin, Jason Hodges, Nicole M Alberts, Jane S Hankins, Jerlym S Porter

Open access · greenAbstract read
In one paragraph

Article in Journal of pediatric psychology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
0.9field-weighted citation impact, top 25% 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, 14 citations in OpenAlex.

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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

7 authors at 3 institutions in 2 countries.

Mary E KeenanDepartment of Psychology, St. Jude Children's Research Hospital, Memphis, TN.
Megan LoewDepartment of Psychology, St. Jude Children's Research Hospital, Memphis, TN.
Kristoffer S BerlinDepartment of Psychology, The University of Memphis, Memphis, TN.
Jason HodgesDepartment of Hematology, St. Jude Children's Research Hospital, Memphis, TN.
Nicole M AlbertsDepartment of Psychology, St. Jude Children's Research Hospital, Memphis, TN.
Jane S HankinsDepartment of Hematology, St. Jude Children's Research Hospital, Memphis, TN.
Jerlym S PorterDepartment of Psychology, St. Jude Children's Research Hospital, Memphis, TN.
St. Jude Children's Research Hospital · USConcordia University · CAUniversity of Memphis · US

Funding

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
Identification of Predictors and Outcomes of Sickle Cell Health Care TransitionK01HL125495 · NHLBI · ST. JUDE CHILDREN'S RESEARCH HOSPITAL · PI PORTER, JERLYM S · 2016 to 2020
$767k
NHLBI NIH HHS K01 HL125495NHLBI NIH HHS U01 HL133996
6 · The paper itself

Abstract

objectiveDetermining how the health-related quality of life (HRQOL) is impacted by living with Sickle Cell Disease (SCD) can inform psychosocial interventions. The purpose of the present study is to determine if demographic and treatment variables predict membership into empirically derived subgroups of HRQOL among youth and young adults with SCD.

methodsThree hundred and seven youth and young adults with SCD (mean 17.63 years ± 3.74 years, 50.5% female) completed the Pediatric Quality of Life InventoryTM Sickle Cell Disease Module. Latent profile analysis examined subgroups/classes of HRQOL and relationships with demographic and treatment variables.

resultsThree distinct classes emerged: High HRQOL (34% of the sample), Moderate HRQOL (44% of the sample), and Low HRQOL (22% of the sample). Being female was associated with increased odds of being in the moderate or low groups. Living with more severe SCD (genotypes HbSS and HbSβ0 thalassemia) was associated with increased odds of being in the Low HRQOL group. Treatment with chronic red blood cell transfusion therapy was associated with increased odds of being in the High HRQOL group. Older age predicted a small increase in the odds of being in the Low versus High HRQOL group.

conclusionsThe present study adds to the literature on HRQOL in SCD by exploring person-centered, empirically derived groups of HRQOL. Identification of demographic and treatment factors that predict membership into those groups within a large sample assists in tailoring needed psychosocial interventions for youth with SCD.

Indexed as

Anemia, Sickle CellQuality of LifeAdolescentAgedChildFemaleHumansMaleYoung Adultchronic illnessquality of lifesickle cell diseasestatistical approach

Identifiers

PMID33249456
PMCPMC7977438
OpenAlexW3108385144

What OpenQuestion holds

Textmetadata
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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.