Adherence to transcranial Doppler screening guidelines among children with sickle cell disease

Abstract

Publicly insured children with HbSS or HbSβ(0) had increasing adherence with TCD screening guidelines between 1997 and 2008, though 31% had no TCD at all during follow-up. Increasing number of sickle cell related outpatient visits was associated with increasing adherence to screening guidelines.

Implementation of transcranial Doppler ultrasonography screening and primary stroke prevention in urban and rural sickle cell disease populations

“…The TCD program has been effective at guaranteeing that the majority (92.7%) of children have received at least one screening TCD. This rate is higher than previously published rates of 41-68.6% [8,11,12]. This likely reflects that our results are from a more recent cohort, and data show continued increase in screening rates since the publication of the STOP trial in 1998 [8,12], with screening rates of only 1.8 per 100 person-years prior to 1998.…”

“…This rate is higher than previously published rates of 41-68.6% [8,11,12]. This likely reflects that our results are from a more recent cohort, and data show continued increase in screening rates since the publication of the STOP trial in 1998 [8,12], with screening rates of only 1.8 per 100 person-years prior to 1998. This increased to 5.0 per 100 person-years between 1998 and 1999 and even further to 11.4 per 100 person-years following 1999 [8].…”

Adherence-Related Issues in Adolescents and Young Adults with Hematological Disorders

“…Nonadherence to iron chelation among children and AYAs with SCD reaches up to approximately 30-60% [33,51,52], while nonadherence to hydroxyurea may be closer to 10-30% [50,53,54] and nonadherence to transcranial Doppler ultrasonography screening was 31% [28]. In one study, only 61% of SCD participants had attended the guideline-recommended number of clinic meetings in the previous year [26].…”

“…In addition, inconsistencies in the physician's behavior, including nonadherence to practice guidelines and not meeting the needs of parents and adolescents, may cause nonadherence to medical treatment [91]. Clinic attendance does not ensure adherence to medical treatment [50] but has been associated with increased adherence to medical recommendations such as screening guidelines in SCD [28]. …”

“…In addition, there are several adherence subtypes [25] demonstrating that the term ‘adherence' relates to concordance not only with recommended medical regimens (i.e. pharmacoadherence) [25], but also with control of symptoms and adverse events, seeking medical help, attending clinic appointments [26], infectious precautions, prevention and reduction of late effects [27,28] (e.g. lifestyle recommendations [29]) and interventions aimed at improving quality of life, each of which have a different role in the therapeutic regimen.…”