Examining the characteristics and beliefs of hydroxyurea users and nonusers among adults with sickle cell disease

Abstract

The attitudes of patients with sickle cell disease (SCD) toward the use of hydroxyurea (HU) therapy may contribute to the underutilization of HU in the United States, yet our understanding of these attitudes is limited. We examined the attitudes and beliefs of 94 adult SCD patients, comparing those who never used HU (n = 37), formerly used HU (n = 23), and were currently using HU (n = 34). Seventy percent of current HU users reported some level of improvement from the drug (“average” or “very much”) and 80% reported little or no trouble from side effects. Fifty-seven percent of former users reported taking HU for less than 6 months, with “doctor's recommendation,” or “not liking the way it made me feel” given as the most commonly reported reasons for stopping HU. Fifty percent of the never users reported receiving no information about HU from any source, and 85% of the never users thought that they would receive no improvement if they were to take HU. A deeper understanding of patient perspectives toward HU utilization is required as part of multipronged efforts to combat its underutilization in the treatment of SCD.

Adherence to hydroxyurea, health-related quality of life domains, and patients’ perceptions of sickle cell disease and hydroxyurea: a cross-sectional study in adolescents and young adults

“…A recent meta-analysis reported lower adherence rates in older patients and those with more identified barriers [16], which are numerous and varied in the literature [13–22]. Nevertheless, the relationship between patients’ perceptions of both hydroxyurea and SCD and their adherence to hydroxyurea has not been previously examined.…”

Parental and other factors associated with hydroxyurea use for pediatric sickle cell disease

“…[15] Insights from prior research in other health conditions suggest barriers to medication use among chronically ill under-served populations generally involve provider-patient relationship dynamics [16–18]. Additional barriers to medication use include incomplete knowledge of drug benefit and logistical factors that impede access to care [19–21]. As a chemotherapeutic agent, barriers to off-label HU therapy likely also include concerns about the safety of short- and long-term use [21].…”

“…Additional barriers to medication use include incomplete knowledge of drug benefit and logistical factors that impede access to care [19–21]. As a chemotherapeutic agent, barriers to off-label HU therapy likely also include concerns about the safety of short- and long-term use [21]. While providers have been surveyed about their perceived barriers to HU therapy [15,22–25], no studies on barriers to HU among parents of children with SCD have been reported.…”

Hydroxycarbamide treatment in sickle cell disease: estimates of possible leukaemia risk and of hospitalization survival benefit

“…There is also evidence that HC increases survival in SCA (Steinberg et al, 2010;Voskaridou et al, 2010;Lobo et al, 2013), and its use is being recommended to a growing number of SCA patients, including children (McGann & Ware, 2011), In practice, however, many eligible patients are not taking the drug (Rees, 2011). One reason for this is the perception that HC could be carcinogenic (Zumberg et al, 2005;Haywood et al, 2011). Although therapy-related acute myeloid leukaemia (t-AML) has been associated with a number of chaemotherapeutic agents, HC has not been shown to be leukaemogenic.…”