Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Greater Number of Perceived Barriers to Hydroxyurea Associated With Poorer Health-Related Quality of Life in Youth With Sickle Cell Disease
source: Pediatric Blood & Cancer
year: 2019
authors: Arlene Smaldone, Deepa Manwani, Nancy S. Green
summary/abstract:Background:
Despite medical benefits, hydroxyurea adherence in adolescents is often poor. As part of a baseline assessment of 28 youth (10-18 years) parent dyads who participated in a 6-month feasibility trial to improve hydroxyurea adherence, we measured the relationship between greater barriers to adherence and health-related quality of life (HRQL) from youth and parent perspectives.
Procedure:
Barriers were measured using the Adolescent and Parent Medication Barriers Scales with nine hydroxyurea items added. Barriers reported by >=25% of the sample were considered common. Generic and disease-specific HRQL were measured by PedsQL and PedsQL Sickle Cell Disease modules. Data were analyzed using descriptive statistics, Cronbach alpha, Spearman correlation coefficients, and paired t tests.
Results:
Fifty-six subjects (28 dyads) participated. Youth reported greater barriers compared with parents (5.0 ± 3.9 and 3.5 ± 3.2; P = 0.03), with >80% of respondents reporting >=1 barriers. Twelve barriers were reported by >=25% of adolescents, whereas six were reported by >=25% of parents. Of these, only two were common to both dyad members. Approximately one-third of youth had generic and disease-specific HRQL scores that fell at or below cutoff scores, suggesting being at risk for impaired HRQL. Greater barriers were inversely associated with poorer generic (parent r = -0.43, P = 0.03; youth r = -0.44, P < 0.001) and disease-specific HRQL (parent r = -0.53, P = 0.005; youth r = -0.53, P < 0.001).
Conclusions:
Hydroxyurea barriers were frequently reported but differed by dyad members’ perspective. Greater barriers were associated with poorer generic and disease-specific HRQL. To reduce barriers to hydroxyurea in youth with sickle cell disease, perspectives of both dyad members should be addressed.
DOI: 10.1002/pbc.27740
read more full text
Related Content
-
Development of a Hydroxyurea Decision Aid for Parents of Children With Sickle Cell AnemiaNational evidence-based guidelines recom...
-
Transition: Taking Charge of Your Health and Health CareTransition is the process of young peopl...
-
Paulette E. Forbes, MPH, MS, APNMs. Paulette E. Forbes serves as an inpa...
-
Sickle Cell Disease Research Shows Progress in Preventing Related Complications and DeathStudies aim to limit pain crises, preven...
-
4 Transition Stages of Sickle Cell Disease and Tips for Each Stagehttps://www.onescdvoice.com/wp-content/u...
-
Stepping up: Kevin’s Decisionhttps://www.youtube.com/watch?v=THZN849V...
-
Discovery could help treatments for sickle cell diseaseResearch team establishes biomarkers for...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.