Caregivers' Perspectives on Barriers to Transcranial Doppler Screening in Children with Sickle Cell Disease.

Children with HbSS or HbSβ^othalassemia have an 11% risk of stroke before the age of 20 without intervention. Transcranial Doppler ultrasonography (TCD) has been instrumental in detecting children with sickle cell disease (SCD) at high risk of stroke. Yearly TCD screenings are recommended for children with HbSS or HbSβ^othalassemia between the ages of 2 and 16 years. However, annual TCD compliance rates are very low. Our objective was to complete a qualitative, descriptive analysis of caregiver understanding, opinions, and barriers to their child's annual TCD screenings.

The study consisted of interviewing 28 caregivers of children diagnosed with HbSS or HbSβ^othalassemia. The interviews were structured around a Health Belief Model (HBM) framework. The HBM describes the interaction of perceived susceptibility, perceived severity, perceived barriers, perceived benefits, cues to action, self-efficacy, demographic factors, and psychosocial factors which together produce the likelihood that an individual will take a recommended health action. The interviews consisted of both open response questions and Likert scale type questions where the caregiver agreed (“5”) or disagreed (“1”) with a statement. Topics covered during the interview included caregiver knowledge of TCD, adherence to screening guidelines, perceived susceptibility of their child to stroke, barriers that may prevent annual TCD screenings, perceived benefits to screening, and self-efficacy. The interviews were audio recorded and were later transcribed and coded. Common themes were extracted from the transcriptions.

61% of the interviewed caregivers reported that their child underwent a TCD in the past year. Many caregivers perceived their child as being at high risk for stroke, as over 60% thought that stroke occurred either “sometimes” or “frequently” in children with SCD. All of the interviewed caregivers saw benefits to TCD screening. We identified seven categories of barriers expressed by caregivers: lack of knowledge, lack of self-efficacy, fear, financial barriers, transportation barriers, missed appointments, and hours of radiology clinic. Three of the most frequently mentioned barriers included lack of knowledge, lack of self-efficacy, and fear of chronic transfusions. Lack of knowledge was reported to be a barrier by 32% of caregivers who reported having very limited knowledge about TCD testing or that they had forgotten the information previously provided to them. 46% of caregivers did not know that TCD screening was an annual test, and only one of the 28 caregivers knew that chronic transfusions would result if the TCD was consistently abnormal. Additionally, only one caregiver knew the age recommendations for screening. Caregivers also seemed to lack self-efficacy, as 18% of caregivers believed they had no role in stroke prevention and 50% did not realize that they could request that their doctor order an annual TCD test. Many caregivers (29%) believed that chronic transfusions could cause their child a lot of problems. Less frequently cited barriers included financial barriers, transportation barriers, missed appointments, and daytime/weekday hours of radiology clinic.

The most commonly encountered barrier to TCD screening described by caregivers was the lack of knowledge of the purpose and recommendations for TCD screenings. We propose that health care providers provide ongoing education at each visit to caregivers regarding stroke risk, TCD screening, and the current recommendations for children with SCD. Some of the barriers identified in this study can easily be addressed to increase TCD compliance rates and decrease stroke incidence rates in children with SCD; for example, offering night and weekend radiology hours or identifying transportation issues prior to a TCD appointment and providing transportation when needed. Educating caregivers on the risks and benefits of chronic transfusions in stroke prevention could also prove beneficial in reducing caregiver fear of chronic transfusions. Strengthening the therapeutic alliance between the caregiver, child, and health care team is essential in order to increase caregiver compliance and self-efficacy with TCD screenings and decrease stroke incidence in children with SCD.

No relevant conflicts of interest to declare.