Evidence map›Paper›PMID 41052714›Full record

ArticleContemporary clinical trials2025

Self-Management for Youth Living with Sickle Cell Disease (SMYLS): A study protocol for a multisite randomized controlled trial testing a behavioral, mHealth app.

Shannon Phillips, Kaila Martin, Alyssa M Schlenz, Julie Kanter, Martina Mueller, Jeffery Lebensburger, Najibah Galandanci, Beng R Fuh, Chelsea Rivenbark, Ofelia A Alvarez and 4 more

Registry-linked trialAbstract readClinical Trial Protocol
PubMed Full text at PMC Publisher
In one paragraph

Article in Contemporary clinical trials, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06035939 (Self-Management for Youth Living With Sickle Cell Disease), which is not on this map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
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.

NCT06035939 narecruitingnot on this map

Self-Management for Youth Living With Sickle Cell Disease: SMYLS Multi-site Trial

TypeinterventionalSponsorMedical University of South CarolinaRan2024 to 2028Enrolled272ConditionsSickle Cell DiseaseArmsVoice Crisis Alert V2, Electronic educational materials
3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

14 authors.

Shannon PhillipsCollege of Nursing, Medical University of South Carolina, 99 Jonathan Lucas St., Room 516, Charleston, SC 29425, USA. Electronic address: phillipss@musc.edu.
Kaila MartinCollege of Medicine, Medical University of South Carolina, 268 Calhoun St., Charleston, SC 29425, USA. Electronic address: martikai@musc.edu.
Alyssa M SchlenzDepartment of Pediatrics, University of Colorado School of Medicine, 13123 E 16(th) Ave, Aurora, CO 80045, USA. Electronic address: alyssa.schlenz@childrenscolorado.org.
Julie KanterDivision of Hematology & Oncology, University of Alabama at Birmingham, 1720 2nd Street South, Birmingham, AL 35294, USA. Electronic address: jkanter@uabmc.edu.
Martina MuellerCollege of Nursing, Medical University of South Carolina, 99 Jonathan Lucas St., Room 516, Charleston, SC 29425, USA. Electronic address: muellerm@musc.edu.
Jeffery LebensburgerDivision of Pediatric Hematology and Oncology, University of Alabama at Birmingham, 1600 7(th) Avenue S, Lowder 512, Birmingham, AL 35233, United States of America. Electronic address: jlebensburger@uabmc.edu.
Najibah GalandanciDivision of Hematology & Oncology, University of Alabama at Birmingham, 1720 2nd Street South, Birmingham, AL 35294, USA. Electronic address: ngaladanci@uabmc.edu.
Beng R FuhDivision of Pediatric Hematology / Oncology, East Carolina University, Greenville, NC, USA. Electronic address: fuhb@ecu.edu.
Chelsea RivenbarkDivision of Pediatric Hematology / Oncology, East Carolina University, Greenville, NC, USA. Electronic address: rivenbarkc@ecu.edu.
Ofelia A AlvarezDivision of Hematology, University of Miami School of Medicine, Miami, FL, USA. Electronic address: oalvarez2@med.miami.edu.
Rochelle F HansonDepartment of Psychiatry and Behavioral Sciences, Medical University of South Carolina, Charleston, SC, USA. Electronic address: hansonrf@musc.edu.
Mohan MadisettiCollege of Nursing, Medical University of South Carolina, 99 Jonathan Lucas St., Room 516, Charleston, SC 29425, USA. Electronic address: madisett@musc.edu.
Margaret PrenticeCollege of Nursing, Medical University of South Carolina, 99 Jonathan Lucas St., Room 516, Charleston, SC 29425, USA. Electronic address: prenticm@musc.edu.
Teresa J KelechiCollege of Nursing, Medical University of South Carolina, 99 Jonathan Lucas St., Room 516, Charleston, SC 29425, USA. Electronic address: kelechtj@musc.edu.

Funding

Self-Management for Youth Living with Sickle Cell Disease (SMYLS)R01NR020606 · NINR · MEDICAL UNIVERSITY OF SOUTH CAROLINA · PI Shannon M. Phillips · 2023 to 2026
$2.1M
NINR NIH HHS R01 NR020606
6 · The paper itself

Abstract

Adolescents and young adults (AYA) with sickle cell disease (SCD) encounter adverse health events during transition to adult care. While AYA with SCD face complex barriers to care, negative outcomes can be mitigated by the development of self-management behaviors. Self-Management for Youth Living with Sickle Cell Disease (SMYLS) is an application designed to improve SCD specific self-management, with promising results from feasibility studies. This paper describes the next stage of SMYLS, a multisite, hybrid type 1 effectiveness-implementation randomized controlled trial. Trial aims are to evaluate the effectiveness of the mHealth application, including the role of patient activation; assess potential for wide-scale implementation; and explore the impact of socioenvironmental and psychosocial factors on outcomes. There will be 272 AYA with SCD and their caregivers enrolled and randomized to control or intervention arm (1:1) after assessing activation level. The intervention arm will receive usual care and be encouraged to use the application daily for an initial intervention period and a later "booster" period, while the control arm will receive usual care plus a version of the application with SCD educational materials. Study aims will be evaluated using mixed methods (participant surveys at 1, 3, 6, 9, and 12 months and interviews with participants and providers/clinic administrators post-intervention). The SMYLS intervention has the potential to inform widescale adoption of a self-management intervention for AYA with SCD. The results may have broader applicability for conducting trials among youth with chronic illnesses facing similar barriers to care and for studying engagement in mHealth self-management interventions. Clinical trial registration number. NCT06035939.

Indexed as

Anemia, Sickle CellMobile ApplicationsSelf-ManagementAdolescentFemaleHumansMaleMulticenter Studies as TopicQuality of LifeRandomized Controlled Trials as TopicTelemedicineYoung AdultAdolescentsmHealthSelf-managementSickle cell diseaseYoung adults

Identifiers

PMID41052714
PMCPMC13159485

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Registered trials

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.