From trust to skepticism: An in-depth analysis across age groups of adults with sickle cell disease on their perspectives regarding hydroxyurea

• Type of Material: Article
• Authors: Cynthia B. Sinha, Emory University; Nitya Bakshi, Emory University; Diana Ross, Emory University; Lakshmanan Krishnamurti, Emory University
• Language: English
• Date: 2018-06-27
• Publisher: Public Library of Science
• Publication Version: Final Published Version
• Copyright Statement: © 2018 Sinha et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1371/journal.pone.0199375
• Title of Journal or Parent Work: PLoS ONE
• ISSN: 1932-6203
• Volume: 13
• Issue: 6
• Start Page: e0199375
• End Page: e0199375
• Grant/Funding Information: This work was supported by Patient Centered Outcomes Research Institute (PCORI) - ce-12-114318; https://www.pcori.org/.; The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
• Keywords: TREATMENT FATIGUE; Multidisciplinary Sciences; BURDEN; MANAGEMENT; Science & Technology; CHILDREN; MORTALITY; THERAPY; Science & Technology - Other Topics; BARRIERS; HEALTH; ANEMIA; ADHERENCE
• Research Categories: Health Sciences, Medicine and Surgery; Health Sciences, Oncology

Abstract

Despite its efficacy, the uptake of HU in adults with sickle cell disease (SCD) is poor likely due to a combination of system, provider, and patient-related factors. We investigated attitudes of adult patients towards HU by conducting qualitative interviews with 95 adult SCD patients (age 18 to 67 years old, 71 were female). While 53% of all participants reported that they were currently taking HU, patients ranging in age 18–30 years (Group 1) were more likely to report current HU use as compared to those (Group 2) ranging in age 31–67 years (65% vs. 41% P = 0.01). Most Group 1 participants who reported currently taking HU indicated that the decision to start HU was made by a parent, though some made the decision themselves as a young adult. Group 1 participants expressed trust in the efficacy of HU as well as trust that their physician adequately shared risks and benefits for the medication. The Group 2 participants, who were not currently on HU, were skeptical that all the risks and benefits of HU were known, were concerned that the efficacy of HU was not proven, and that they were not receiving complete information about its potential side effects. Of Group 2 participants who reported currently being on HU, 25% were concerned about the side effects and efficacy of HU and reported continuing HU because of a lack of effective alternatives. These data suggest that there are significant differences by age in adult SCD patients’ attitudes towards, utilization and understanding of the risks and benefits of HU.