TY - JOUR
T1 - Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease
T2 - A qualitative study
AU - Hodges, Jason R.
AU - Phillips, Shannon M.
AU - Norell, Sarah
AU - Nwosu, Chinonyelum
AU - Khan, Hamda
AU - Luo, Lingzi
AU - Badawy, Sherif M.
AU - King, Allison
AU - Tanabe, Paula
AU - Treadwell, Marsha
AU - Smith, Lucia Rojas
AU - Calhoun, Cecelia
AU - Hankins, Jane S.
AU - Porter, Jerlym
N1 - Publisher Copyright:
© 2020 by The American Society of Hematology
PY - 2020/9
Y1 - 2020/9
N2 - Hydroxyurea is an efficacious treatment for sickle cell disease (SCD), but adoption is low among individuals with SCD. The objective of this study was to examine barriers to patients' adherence to hydroxyurea use regimens by using the intentional and unintentional medication nonadherence framework. We interviewed individuals with SCD age 15 to 49.9 years who were participants in the Sickle Cell Disease Implementation Consortium (SCDIC) Needs Assessment. The intentional and unintentional medication nonadherence framework explains barriers to using hydroxyurea and adds granularity to the understanding of medication adherence barriers unique to the SCD population. In total, 90 semi-structured interviews were completed across 5 of the 8 SCDIC sites. Among interviewed participants, 57.8% (n 5 52) were currently taking hydroxyurea, 28.9% (n 5 26) were former hydroxyurea users at the time of the interview, and 13.3% (n 5 12) had never used hydroxyurea but were familiar with the medication. Using a constructivist grounded theory approach, we discovered important themes that contributed to nonadherence to hydroxyurea, which were categorized under unintentional (eg, Forgetfulness, External Influencers) and intentional (Negative Perceptions of Hydroxyurea, Aversion to Taking Any Medications) nonadherence types. Participants more frequently endorsed adherence barriers that fell into the unintentional nonadherence type (70%) vs intentional nonadherence type (30%). Results from this study will help SCD health care providers understand patient choices and decisions as being either unintentional or intentional, guide tailored clinical discussions regarding hydroxyurea therapy, and develop specific, more nuanced interventions to address nonadherence factors.
AB - Hydroxyurea is an efficacious treatment for sickle cell disease (SCD), but adoption is low among individuals with SCD. The objective of this study was to examine barriers to patients' adherence to hydroxyurea use regimens by using the intentional and unintentional medication nonadherence framework. We interviewed individuals with SCD age 15 to 49.9 years who were participants in the Sickle Cell Disease Implementation Consortium (SCDIC) Needs Assessment. The intentional and unintentional medication nonadherence framework explains barriers to using hydroxyurea and adds granularity to the understanding of medication adherence barriers unique to the SCD population. In total, 90 semi-structured interviews were completed across 5 of the 8 SCDIC sites. Among interviewed participants, 57.8% (n 5 52) were currently taking hydroxyurea, 28.9% (n 5 26) were former hydroxyurea users at the time of the interview, and 13.3% (n 5 12) had never used hydroxyurea but were familiar with the medication. Using a constructivist grounded theory approach, we discovered important themes that contributed to nonadherence to hydroxyurea, which were categorized under unintentional (eg, Forgetfulness, External Influencers) and intentional (Negative Perceptions of Hydroxyurea, Aversion to Taking Any Medications) nonadherence types. Participants more frequently endorsed adherence barriers that fell into the unintentional nonadherence type (70%) vs intentional nonadherence type (30%). Results from this study will help SCD health care providers understand patient choices and decisions as being either unintentional or intentional, guide tailored clinical discussions regarding hydroxyurea therapy, and develop specific, more nuanced interventions to address nonadherence factors.
UR - http://www.scopus.com/inward/record.url?scp=85092251966&partnerID=8YFLogxK
U2 - 10.1182/BLOODADVANCES.2020001701
DO - 10.1182/BLOODADVANCES.2020001701
M3 - Article
C2 - 32941646
AN - SCOPUS:85092251966
SN - 2473-9529
VL - 4
SP - 4463
EP - 4473
JO - Blood Advances
JF - Blood Advances
IS - 18
ER -