A medication adherence app for children with sickle cell disease: qualitative study

Kristina Curtis, Anastasiya Lebedev, Elisa Aguirre, Stephan Lobitz

    Research output: Contribution to journalArticlepeer-review

    15 Citations (Scopus)
    93 Downloads (Pure)


    Background: Young people with sickle cell disease (SCD) often demonstrate low medication adherence and low motivation for effectively self-managing their condition. The growing sophistication of mobile phones and their popularity among young people render them a promising platform for increasing medication adherence. However, so far, few apps targeting SCD have been developed from research with the target population and underpinned with theory and evidence.

    Objective: The aim of this study was to develop a theory-and-evidence-based medication adherence app to support children and adolescents with SCD.

    Methods: The Behavior Change Wheel (BCW), a theoretically based intervention development framework, along with a review of the literature, 10 interviews with children and adolescents with SCD aged between 12 and 18 years, and consultation with experts informed app development. Thematic analysis of interviews provided relevant theoretical and evidence-based components to underpin the design and development of the app.

    Results: Findings suggested that some patients had lapses in memory for taking their medication (capability); variation in beliefs toward the effectiveness of medication and confidence in self-managing their condition (motivation); a limited time to take medication; and barriers and enablers within the changing context of social support during the transition into adulthood (opportunity). Steps were taken to select the appropriate behavioral change components (involving behavior change techniques [BCTs] such as information on antecedents, prompts/cues; self-monitoring of the behavior; and social support) and translate them into app features designed to overcome these barriers to medication adherence.

    Conclusions: Patients with SCD have complex barriers to medication adherence necessitating the need for comprehensive models of behavior change to analyze the problem. Children and adolescents require an app that goes beyond simple medication reminders and takes into account the patient’s beliefs, emotions, and environmental barriers to medication adherence.
    Original languageEnglish
    Article numbere8130
    Number of pages19
    JournalJMIR mHealth and uHealth
    Issue number6
    Publication statusPublished - 18 Jun 2019

    Bibliographical note

    This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mhealth and uhealth, is properly cited. The complete bibliographic information, a link to the original publication on http://mhealth.jmir.org/, as well as this copyright and license information must be included


    Dive into the research topics of 'A medication adherence app for children with sickle cell disease: qualitative study'. Together they form a unique fingerprint.

    Cite this