Literature DB >> 29571930

HABIT, a Randomized Feasibility Trial to Increase Hydroxyurea Adherence, Suggests Improved Health-Related Quality of Life in Youths with Sickle Cell Disease.

Arlene Smaldone1, Sally Findley2, Deepa Manwani3, Haomiao Jia4, Nancy S Green5.   

Abstract

OBJECTIVES: To examine the effect of a community health worker (CHW) intervention, augmented by tailored text messages, on adherence to hydroxyurea therapy in youths with sickle cell disease, as well as on generic and disease-specific health-related quality of life (HrQL) and youth-parent self-management responsibility concordance. STUDY
DESIGN: We conducted a 2-site randomized controlled feasibility study (Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment [HABIT]) with 2:1 intervention allocation. Youths and parents participated as dyads. Intervention dyads received CHW visits and text message reminders. Data were analyzed using descriptive statistics, the Wilcoxon signed-rank test, and growth models adjusting for group assignment, time, and multiple comparisons. Changes in outcomes from 0 to 6 months were compared with their respective minimal clinically important differences.
RESULTS: A total of 28 dyads (mean age of youths, 14.3 ± 2.6 years; 50% Hispanic) participated (18 in the intervention group, 10 in the control group), with 10.7% attrition. Accounting for group assignment, time, and multiple comparisons, at 6 months intervention youths reported improved generic HrQL total score (9.8 points; 95% CI, 0.4-19.2) and Emotions subscale score (15.0 points; 95% CI, 1.6-28.4); improved disease-specific subscale scores for Worry I (30.0 points; 95% CI, 8.5-51.5), Emotions (37.0 points, 95% CI, 9.4-64.5), and Communication I (17.8 points; 95% CI, 0.5-35.1); and 3-month dyad self-management responsibility concordance (3.5 points; 95% CI, -0.2 to 7.1). There were no differences in parent proxy-reported HrQL measures at 6 months.
CONCLUSIONS: These findings add to research examining effects of behavioral interventions on HrQL outcomes in youths with sickle cell disease. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02029742.
Copyright © 2018 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  community health worker; health related quality of life; hydroxyurea; medication adherence; sickle cell disease

Mesh:

Substances:

Year:  2018        PMID: 29571930      PMCID: PMC5970970          DOI: 10.1016/j.jpeds.2018.01.054

Source DB:  PubMed          Journal:  J Pediatr        ISSN: 0022-3476            Impact factor:   4.406


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2.  Community Health Workers as Support for Sickle Cell Care.

Authors:  Lewis L Hsu; Nancy S Green; E Donnell Ivy; Cindy E Neunert; Arlene Smaldone; Shirley Johnson; Sheila Castillo; Amparo Castillo; Trevor Thompson; Kisha Hampton; John J Strouse; Rosalyn Stewart; TaLana Hughes; Sonja Banks; Kim Smith-Whitley; Allison King; Mary Brown; Kwaku Ohene-Frempong; Wally R Smith; Molly Martin
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3.  Hydroxyurea therapy for sickle cell disease in community-based practices: a survey of Florida and North Carolina hematologists/oncologists.

Authors:  Marc S Zumberg; Suresh Reddy; Robert L Boyette; Robert J Schwartz; Thomas R Konrad; Richard Lottenberg
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4.  Health-related quality of life in children with sickle cell disease using the child health questionnaire.

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Review 5.  Systematic and Meta-Analytic Review: Medication Adherence Among Pediatric Patients With Sickle Cell Disease.

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6.  Improving asthma outcomes in minority children: a randomized, controlled trial of parent mentors.

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7.  Validity of the Pediatric Quality Of Life Inventory for youth with sickle cell disease.

Authors:  Catherine B McClellan; Jeffrey Schatz; Carmen Sanchez; Carla W Roberts
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8.  A multicenter randomized controlled trial of intravenous magnesium for sickle cell pain crisis in children.

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Journal:  Blood       Date:  2015-07-31       Impact factor: 22.113

9.  The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity.

Authors:  James W Varni; Tasha M Burwinkle; Michael Seid; Douglas Skarr
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  3 in total

1.  Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth.

Authors:  Jennel C Osborne; Nancy S Green; Arlene M Smaldone
Journal:  Hisp Health Care Int       Date:  2020-03-03

2.  HABIT efficacy and sustainability trial, a multi-center randomized controlled trial to improve hydroxyurea adherence in youth with sickle cell disease: a study protocol.

Authors:  Arlene Smaldone; Deepa Manwani; Banu Aygun; Kim Smith-Whitley; Haomiao Jia; Jean-Marie Bruzzese; Sally Findley; Joshua Massei; Nancy S Green
Journal:  BMC Pediatr       Date:  2019-10-15       Impact factor: 2.567

Review 3.  Health-Related Quality of Life and Adherence to Hydroxyurea and Other Disease-Modifying Therapies among Individuals with Sickle Cell Disease: A Systematic Review.

Authors:  Mira Yang; Lena Elmuti; Sherif M Badawy
Journal:  Biomed Res Int       Date:  2022-07-18       Impact factor: 3.246

  3 in total

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