Psychoeducational Screening in Pediatric Sickle Cell Disease: An Evaluation of Academic and Health Concerns in the School Environment

Mayes, Sunnye; Wolfe‐Christensen, Cortney; Mullins, Larry L.; Cain, Joan P.

doi:10.1080/02739615.2011.566465

Cited by 9 publications

(18 citation statements)

References 13 publications

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“…Approximately 60% of children with SCD report academic difficulties related to their disease 20 . Academic deficits in SCD are associated with overt and silent stroke 13,18,21 , and school absenteeism 22,23 . Likely related to increased school absenteeism over the lifespan, academic problems also seem to increase over time 24 .…”

Section: Introductionmentioning

confidence: 99%

“…Routine screening is thus recommended to assess for cognitive and academic concerns in children with SCD 6,22 , and our institution instituted a neurocognitive screening program in 2017. This paper describes the outcomes of these evaluations, with screening methodology and referral outcomes more explicitly discussed in a separate manuscript (in preparation).…”

Section: Introductionmentioning

confidence: 99%

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Clinical Outcomes of a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

Karst

Miller

Heffelfinger

et al. 2020

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Objective: Sickle cell disease (SCD) is associated with neurocognitive and academic impairment. Routine screening is recommended to evaluate for possible concerns. This paper describes results from a neurocognitive screening battery and evaluates relationships with psychosocial and medical variables. Methods: Participants included 61 patients stratified among three age groups, including ages 6-7, ages 11-12, and ages 15-16. Patients completed a screening assessing cognitive performance, academic functioning, and attention (older subjects completed a task of executive function) and a measure assessing HRQL. Caregivers completed a clinical interview and forms evaluating HRQL, executive functioning, and attention. The impact of relevant medical variables and socioeconomic status (SES) was also considered. Results: Between 20% and 33% of participants scored [?] 1 SD below age-based means on intellectual subtests, and between 31 and 48% scored [?] 1 SD below grade-based means on academic subtests. Attention concerns were noted in 25% of patients, while 20-31% of parents reported executive function concerns. Neither disease subtype nor hemoglobin were associated with cognitive or academic functioning. There was an association between mean corpuscular volume (MCV) and both cognitive abilities and psychosocial health. Cognitive scores were correlated with SES, suggesting an impact of socioeconomic disparities on performance. Conclusions: Sickle Cell Disease negatively impacts cognitive and academic functioning both directly and indirectly due to pain, missed school, and through socioeconomic and racial disparities. These concerns may increase over time as disease processes and medication compliance often worsen. Longitudinal research is needed to further explore these trends.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Clinical Outcomes of a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

Karst

Miller

Heffelfinger

et al. 2020

Preprint

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“…Experiencing SCD episodes (i.e., pain episodes and physical complications) in the school environment presents unique challenges for students to keep up with academic and school‐related activities . Challenges of SCD in the school environment include increased school absenteeism, concerns of grade retention, noticeable declines in attention cognition, physical/academic accommodations, and psychosocial adjustment . Furthermore, the frequency, timing, extent, and manner of complications associated with SCD and how these factors vary among children may not be known by school staff, which further limits care .…”

Section: Introductionmentioning

confidence: 99%

“…7 Challenges of SCD in the school environment include increased school absenteeism, concerns of grade retention, noticeable declines in attention cognition, physical/academic accommodations, and psychosocial adjustment. [8][9][10][11][12][13] Furthermore, the frequency, timing, extent, and manner of complications associated with SCD and how these factors vary among children may not be known by school staff, which further limits care. 5,10 Additionally, most teachers are not made aware that they have students with SCD in their classroom, which further complicates the task of caring for students at school.…”

Section: Introductionmentioning

confidence: 99%

Student perspectives on managing sickle cell disease at school

Haridasa

DeBaun

Sanger

et al. 2018

Pediatric Blood & Cancer

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Objective The study objective was to identify the perceptions of children with sickle cell disease (SCD) in the school environment. Methods Semistructured interviews (N = 14) were conducted with pediatric patients ages 6 to 10 who attended Metro Nashville Public Schools. These participants were recruited through the Vanderbilt Sickle Cell Disease Clinic. Participants were asked about the perceived efficacy of their teachers to (1) understand SCD; (2) communicate with students regarding SCD; (3) handle an SCD‐related pain episode in school; and (4) identify methods to compensate for school absenteeism associated with an SCD diagnosis. Content analysis identified underlying themes. Results Five themes emerged that highlighted the perceptions and recommendations of children with SCD in the school environment: (1) perceptions that allow students to prevent SCD from limiting their school experience; (2) administrator actions to alleviate challenges associated with SCD; (3) communication about SCD; (4) how SCD interferes with school activities; and (5) ways students advocate for themselves. Students also provided four areas of recommendations for school personnel: (1) ways teachers can help with school activities; (2) make‐up work for school absences; (3) empowering students with SCD; and (4) helping with SCD episodes at school. Conclusions Students with SCD advocated strongly for their needs at school to attain their education. However, they perceived school personnel to lack knowledge about SCD management. This could be overcome with a handbook specific for teachers of students with SCD that could address each of the five themes.

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“…Similar to other pediatric chronic disease groups (e.g., Muscal et al, 2010; Wasserman et al, 2016), routine neurocognitive screening is recommended for children with SCD (Mayes et al, 2011; Noll et al, 2001). Hardy and colleagues (2017) proposed a tiered model of screening for children with medical conditions at risk for cognitive impairment, with three levels of assessment ranging from universal monitoring to targeted screening to a comprehensive evaluation.…”

mentioning

confidence: 99%

Referral Outcomes From a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

Karst¹,

Miller²,

Heffelfinger³

et al. 2023

Clinical Practice in Pediatric Psychology

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Objective: Pediatric sickle cell disease (SCD) is associated with neurocognitive and academic impairment. However, not all patients receive appropriate educational or therapeutic services. It is important to identify patients at risk of academic or psychosocial difficulties and make appropriate referrals. This article explores referrals made from a screening program within a comprehensive SCD clinic. Method: All patients seen at the clinic were eligible for participation in the screening program. Patients (N = 61) cross three age cohorts (i.e., age 6 to 7, age 11 to 12, and age 15 to 16) consented to research participation. Participants completed a 1-hr screening that included cognitive, academic, attention, and parent-report measures of behavior and executive functioning and caregiver and patient interviews. Results: Parents reported concerns across academic and learning domains, and performance on clinical measures suggested a high rate of patients at least one standard deviation below normative means. Following screening, 48% of patients were referred for additional support services via an existing Section 504 Plan/IEP, whereas 18% more were recommended to have a plan implemented. Of the participants, 41% were referred for further evaluation or counseling, whereas 26% were diagnosed with attention-deficit/hyperactivity disorder or had an existing diagnosis confirmed. Conclusions: Neurocognitive screening in SCD is essential. Participants in this program demonstrated challenges across many domains and received a broad range of recommendations and referrals. Problems were identified above and beyond parent-report concerns. Future research should identify incremental value of specific measures used and whether additional tiers of screening are necessary.

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Psychoeducational Screening in Pediatric Sickle Cell Disease: An Evaluation of Academic and Health Concerns in the School Environment

Cited by 9 publications

References 13 publications

Clinical Outcomes of a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

Clinical Outcomes of a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

Student perspectives on managing sickle cell disease at school

Referral Outcomes From a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

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