Identified barriers and facilitators to stroke risk screening in children with sickle cell anemia: results from the DISPLACE consortium

Phillips, Shannon; Schlenz, Alyssa M; Mueller, Martina; Melvin, Cathy L.; Adams, Robert J.; Kanter, Julie

doi:10.1186/s43058-021-00192-z

Cited by 4 publications

(1 citation statement)

References 37 publications

(33 reference statements)

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“…For questions involving barriers to care, we applied the multiecological model of health to organize barriers that may exist at the patient/family, provider, organization, and system/policy levels (Taplin et al, 2012). This approach is consistent with a previous report from our group evaluating barriers to stroke prevention practices (Phillips et al, 2021). Barrier options were grouped as follows: patient/family level (parental difficulty understanding rationale and importance, practical barriers), provider level (lack of SCD guidelines for referral, evaluations/ services are poor quality or lack SCD expertise), organizational level (lack of available providers, lack of appointment flexibility, long waitlist), and societal/policy level (insurance does not cover, stigma around psychology services).…”

Section: Discussionmentioning

confidence: 99%

Practice patterns for addressing developmental-behavioral concerns in sickle cell specialty care.

Schlenz¹,

Phillips²,

Mueller³

et al. 2023

Clinical Practice in Pediatric Psychology

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Objective: Children with sickle cell disease (SCD) are at elevated risk for neurodevelopmental and behavioral disorders. This article describes developmental-behavioral practice patterns among sites who were part of the Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) consortium in the context of current guidelines for addressing these concerns. Methods: An internal survey was developed for the principal investigators of the DISPLACE study to identify developmental-behavioral clinical practices across the 28-site consortium, including methods for identification, referral practices, access to psychologists, and barriers to services. Descriptive data were pulled from the survey to describe practice patterns. Results: Most sites used informal methods to detect developmental-behavioral concerns, though over one third of sites were using a structured protocol. The most common referral indications for further developmental and neuropsychological evaluation were parent, provider, or school concerns or stroke. Evaluations were predominantly completed by pediatric neuropsychologists and pediatric psychologists. Despite most sites reporting access to a psychologist within the SCD clinic, sites also reported long waitlists and difficulty accessing providers for evaluation and treatment services. Insurance difficulties were also a common barrier. A range of additional barriers were reported at the patient, provider, organizational, and policy/socioenvironmental levels. Conclusions: Many sites in the DISPLACE consortium were adhering to existing care guidelines for pediatric SCD; however, there was also wide variation in practices for which guidelines are absent or unclear. Additional work is needed to inform guidelines, to specify the role of psychology within specialty SCD care, and to overcome barriers to care.

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Section: Discussionmentioning

confidence: 99%

Practice patterns for addressing developmental-behavioral concerns in sickle cell specialty care.

Schlenz¹,

Phillips²,

Mueller³

et al. 2023

Clinical Practice in Pediatric Psychology

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Limited access to transcranial Doppler screening and stroke prevention for children with sickle cell disease in Europe: Results of a multinational EuroBloodNet survey

Voi,

Gutierrez‐Valle,

Cuzzubbo

et al. 2024

Pediatric Blood & Cancer

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BackgroundEnsuring equitable access to adequate standard of care for patients with rare hematological disease is one of the aims of the European Reference Network (ERN) EuroBloodNet. Stroke is one of the most devastating complications for children with sickle cell disease (SCD). For effective prevention of stroke risk, annual transcranial Doppler (TCD) according to a defined protocol is recommended for patients aged 2–16 years, with red blood cell transfusion therapy for those at risk. There is no information regarding screening for stroke risk and stroke prevention programs in Europe.MethodsSeven SCD experts of five healthcare providers (HCPs) of ERN EuroBloodNet developed an online survey to assess the access to TCD screening and stroke prevention programs for children with SCD in Europe.ResultsEighty‐one experts in 77 HCPs from 16 European countries responded to 16 online questions. Thirty‐two of 77 (51%) HCPs were EuroBloodNet reference centers, and 36% physicians reported not having a dedicated TCD/TCD imaging service for children with SCD. Only 30% of physicians provided estimates that all their patients received annual TCD according to the standard protocol due to lack of trained staff (43%), lack of TCD instruments (11%), refusal of patients due to logistical difficulties (22%), and lack of funds for dedicated staff or equipment (11%).ConclusionsThis multinational European survey provides the first comprehensive picture of access to TCD screening and stroke prevention in European countries. Identifying the potential underlying causes of the lack of effective standardized screening, this survey also addresses possible dedicated actions to cover these needs.

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DISPLACE study shows poor quality of transcranial doppler ultrasound for stroke risk screening in sickle cell anemia

Davidow,

Miller,

Phillips

et al. 2024

Blood Advances

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Children with sickle cell anemia (SCA) are at increased risk of stroke when compared to age-based counterparts. The Stroke Prevention Trial in Sickle Cell Anemia (STOP) previously demonstrated that with the use of transcranial Doppler ultrasound (TCD; Sickle Stroke Screen) and chronic red cell transfusion, the risk of stroke risk is reduced by over 90%. The STOP criteria detailed the type and method of measurement required; the time averaged mean maximum velocity (TAMMV). Unfortunately, it has been difficult to adhere to the appropriate TAMMV measurements. The objectives of this study were to assess the quality of TCD and transcranial Doppler imaging (TCDi) reports to determine report quality and accuracy. This is a sub-analysis of the DISPLACE (Dissemination and Implementation of Stroke Prevention Looking at the Care Environment) study. Over 12,000 TCD/TCDi reports were collected during this study from 28 institutions; 391 TCDs were reviewed for this sub-analysis. There was significant variation in which vessels were assessed, the velocities used to define abnormal results, and who was interpreting the scans. In 52% of reports, it was impossible to identify whether the TAMMV was what was measured. Similarly, it was only clear in 42% of reports that the TAMMV was used to interpret the exam as normal/abnormal. Given this inconsistency, we strongly recommend standardization of TCD/TCDi reporting, specialized training for those performing and interpreting the scans in the use of TCD/TCDi in patients with SCA, internal quality assurance, and institutional quality improvement work to ensure appropriate use of this potentially lifesaving technology.

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Identified barriers and facilitators to stroke risk screening in children with sickle cell anemia: results from the DISPLACE consortium

Cited by 4 publications

References 37 publications

Practice patterns for addressing developmental-behavioral concerns in sickle cell specialty care.

Practice patterns for addressing developmental-behavioral concerns in sickle cell specialty care.

Limited access to transcranial Doppler screening and stroke prevention for children with sickle cell disease in Europe: Results of a multinational EuroBloodNet survey

DISPLACE study shows poor quality of transcranial doppler ultrasound for stroke risk screening in sickle cell anemia

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