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Adherence to hydroxyurea, health-related quality of life domains and attitudes towards a smartphone app among Irish adolescents and young adults with sickle cell disease

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posted on 01.10.2021, 11:15 authored by Helen FogartyHelen Fogarty, Alan Gaul, Saifullah Syed, Natalija Aleksejenko, Rosena Geoghegan, Helena Conroy, Edel Crampton, Noel Ngwenya, Emma Tuohy, Corrina McMahon

Introduction: SCD patients experience declines in health-related quality of life (HRQOL) domains compared with healthy controls. Despite evidence supporting the benefits of hydroxyurea, medication non-adherence remains problematic, especially in adolescents and young adults (AYA). Adherence barriers include forgetfulness and lack of knowledge. Recently, increased interest in technology-based strategies to improve medication adherence has emerged. No data currently exists on hydroxyurea adherence, HRQOL or perceptions of technology-based tools in the Irish SCD population.

Methods: In order to interrogate these domains among Irish AYA SCD patients we administered an anonymous survey at two tertiary referral centres in Dublin, Ireland, in July 2019.

Results: Sixty-three patients participated; 63% female and 37% male, with a median and mean age of 17 and 19 years, respectively. Average monthly adherence was 76% using a visual analogue scale. Recall barriers were present in 62% while 26% omit hydroxyurea for reasons other than forgetting. Reviewing HRQOL; only 36.5% felt always physically able to engage in recreational activities, while 51% experienced disruption to school/college/work due to pain. Eighty-one percent reported that anxiety about health interferes with their lives and non-adherence correlated with worse HRQOL outcomes. Interest in a smartphone app was expressed by the majority, with daily medication reminders being the most popular feature. Sharing adherence data with doctors and discussion forums were less appealing.

Conclusions: Representing over 10% of the Irish SCD population, our survey provides novel and valuable insights into medication adherence and HRQOL domains. Preferred app features may inform future technology-based interventions to improve medication adherence in SCD and other chronic health conditions

Funding

Wellcome Trust

Health Research Board (Grant Number 203930/B/16/Z)

Health Service Executive, National Doctors Training and Planning

Health and Social Care, Research and Development Division, Northern Ireland

History

Comments

The original article is available at https://link.springer.com

Published Citation

Fogarty H. et al. Adherence to hydroxyurea, health-related quality of life domains and attitudes towards a smartphone app among Irish adolescents and young adults with sickle cell disease. Ir J Med Sci. 2021 Mar 20.

Publication Date

20 March 2021

PubMed ID

33745105

Department/Unit

  • Irish Centre for Vascular Biology
  • School of Pharmacy and Biomolecular Sciences
  • Undergraduate Research

Publisher

Springer Science and Business Media LLC

Version

  • Published Version (Version of Record)