Beliefs about hydroxyurea in youth with sickle cell disease

Badawy, Sherif M.; Thompson, Alexis A.; Liem, Robert I.

doi:10.1016/j.hemonc.2018.01.001

Cited by 42 publications

(51 citation statements)

References 57 publications

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“…16 These categories of nonadherence could play an important role in helping care providers more fully understand adherence behaviors among people with SCD, especially given the demonstrated mistrust of medical providers and the medical establishment overall, including the perceived lack of agency in this power dynamic, 31,32 evidence of low health literacy among people living with SCD, 33 and beliefs about the efficacy and safety of hydroxyurea. 34,35 The purpose of this article is to add to the literature on hydroxyurea adherence by exploring, via qualitative methodology, the unintentional and intentional nonadherence factors that influence adherence decisions among individuals with SCD who participated in a multicenter study and who represented a diverse geographic distribution in the United States.…”

Section: Introductionmentioning

confidence: 99%

Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study

et al. 2020

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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 = 52) were currently taking hydroxyurea, 28.9% (n = 26) were former hydroxyurea users at the time of the interview, and 13.3% (n = 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.

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Section: Introductionmentioning

confidence: 99%

Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study

et al. 2020

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“…Hydroxyurea was approved in 1998. Although it has clinical efficacy and has been to decrease hospitalizations to 47% and pain crises to 43% [38], adherence to hydroxyurea always remained a challenge [39]. Moreover, patients taking hydroxyurea still experience end-organ damage, crisis episodes, and decreased life expectancy [40].…”

Section: Discussionmentioning

confidence: 99%

“…SCD drugs have low compliance because of the daily dosing schedule [39]. Crizanlizumab has the benefit of a single dose in 4 weeks, which can increase compliance with this drug.…”

Section: Discussionmentioning

confidence: 99%

Efficacy and safety of recently approved drugs for sickle cell disease: a review of clinical trials

Ali

Ahmad

Chaudry

et al. 2020

Experimental Hematology

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MAA was responsible for conceptualization, methodology, and writing of the original draft. AA was responsible for visualization, supervision, and validation. HC was responsible for data curation, reviewing, and editing. WA was responsible for data curation and writing of the original draft. SA was responsible for data curation and writing of the original draft. MYA was responsible for data curation, writing, reviewing, editing, and software. AK was responsible for data curation and methodology.

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“…Patients and families may have a variety of different medication concerns (eg, potential side effects, overuse of medications), which are closely associated with long-term HU medication adherence. 16 As a result, it can be challenging to educate, counsel, and coach patients regarding chronic medications during the limited time of an outpatient visit. The presence of additional support staff can help improve clinic efficiency.…”

Section: Discussionmentioning

confidence: 99%

Barriers to Pediatric Sickle Cell Disease Guideline Recommendations

Cabana

Kanter

Marsh

et al. 2019

Global Pediatric Health

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National guidelines recommend that providers counsel all patients with sickle cell anemia about hydroxyurea (HU) therapy and screen children with sickle cell anemia annually for the risk of stroke with transcranial Doppler (TCD). We surveyed a national convenience sample of sickle cell disease clinicians to assess factors associated with low adherence. Adherence was 46% for TCD screening. Low adherence was associated with a lack of outcome expectancy (eg, a belief that there would be poor patient follow-up to TCD testing; P < .05). Adherence was 72% for HU counseling. Practice barriers (eg, lack of support staff or time) and a lack of agreement with HU recommendations were associated with low adherence ( P < .05). This study demonstrates that different types of strategies are needed to improve TCD screening (to address follow-up and access to testing) versus HU counseling (to address physician agreement and practice barriers).

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Beliefs about hydroxyurea in youth with sickle cell disease

Abstract: Beliefs about hydroxyurea correlated with HRQOL scores and adherence levels. Addressing patients' concern about hydroxyurea and medications overall as well as routine assessment of adherence and beliefs could help to overcome adherence barriers.

Cited by 42 publications

References 57 publications

Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study

Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study

Efficacy and safety of recently approved drugs for sickle cell disease: a review of clinical trials

Barriers to Pediatric Sickle Cell Disease Guideline Recommendations

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