Health Literacy - Neurocognitive Screening in Pediatric SCD
Condition: Sickle Cell Disease
MeSH terms: Anemia, Sickle Cell
Study type: Interventional

Summary: 
      The purpose of this study is to determine feasibility and potential benefits of providing a
      passport card with a summary of neurocognitive feedback results to families of patients with
      sickle cell disease. Given recent literature suggesting the need to be conscious of health
      literacy in populations with low socioeconomic status, this project is intended to provide a
      more health-literate appropriate format of neurocognitive evaluation feedback in the context
      of a routine screening program offered as a standard of care in the CHW pediatric sickle cell
      disease clinic. The specific aims is (1) to evaluate differences in caregiver understanding
      of neurocognitive report findings when provided with a health-literate passport card compared
      to control group and (2) to evaluate differences in follow-through on neurocognitive report
      recommendations when provided with a health-literate passport card compared to control group.
    

Detailed description: 
      Pediatric sickle cell disease (SCD) is a blood disorder affecting approximately 70,000 to
      100,000 individuals in the United States. Approximately 80% of individuals affected by SCD
      are African American, with approximately one out of every 346 individuals in this racial
      group diagnosed. Sickle cell disease is associated with broad neurocognitive impairment.
      Compared to their healthy peers, children with SCD demonstrate deficits in intellectual
      functioning, verbal abilities, visual-motor, and visual-spatial skills, short-term memory,
      executive functioning, attention and focus, and processing speed.

      Neurocognitive deficits can result from primary disease-related factors including chronic
      anemia, hypoxemia, or cerebrovascular ischemia; as well as secondary factors such as missed
      school and a higher prevalence of socio-economic disadvantages in African American children.
      While direct neurological impact appears to be associated with neurocognitive performance, it
      was found that even children with no MRI abnormality evidence lower intellectual functioning
      skills than healthy controls, suggesting that "biological, socioeconomic, and environmental"
      factors are all implicated in neurocognitive impairment.

      Because of these deficits, children with SCD are more likely to be retained in school
      relative to other African American students at the local and national levels. In addition,
      poorer cognitive and academic performance is associated with a decrease in patient-reported
      quality of life and general psychosocial functioning. In turn, greater levels of stress and
      negative mood are correlated with higher levels of reported pain, greater health care
      utilization, and reduced physical activity. It appears that sickle cell disease not only
      contributes to poorer neurocognitive and social-emotional well-being, but that declines in
      these domains can further exacerbate sickle cell disease symptoms.

      Because of the deficits in neurocognitive functioning of children with SCD, routine screening
      is recommended to assess for cognitive deficits and provide appropriate recommendations.
      Unfortunately, prior research in SCD suggests limited follow-up on referrals and
      recommendations. For example, it was found that 25% of children with SCD evaluated by a
      neuropsychologist met the criteria for ADHD, but only 21% of the children subsequently
      diagnosed with ADHD were prescribed medication. In addition, it was found that children with
      SCD were not universally receiving appropriate school accommodations and interventions based
      on their cognitive deficits, despite the recommendation that school-based services be
      implemented immediately for children with SCD.

      The disconnect between the cognitive, emotional/behavioral, and academic deficits are
      typically seen in children with SCD and the actual support received may be due in part to low
      health literacy and the provision of complex reports following testing. Health literacy has
      been found to be low in adolescents and adults with sickle cell disease. Another study found
      that caregivers of children with SCD had a low level of baseline disease-related knowledge
      but that this knowledge did improve with in-person education; however, this knowledge
      appeared to decline over time. Unfortunately, materials developed to improve knowledge often
      do not fit criteria for broad population health literacy. One study found that patient
      education materials developed for patients with sickle cell disease and their families ranged
      from an 8th to 12th grade reading level, with limited potential to translate written
      recommendations into concrete actions.

      Broadly, research suggests the need for a change within the historical format of
      neurocognitive evaluation reports. It is noted as a need to make written reports provided to
      families more efficient, readable, and effective. Providing appropriate feedback to families
      appears essential, as it can improve health-related quality of life, coping, and
      understanding. An informal calculation of the current reports provided to families in our
      clinic's neurocognitive screening program suggested that reports averaged a reading level
      grade of 12.3 and approximately 17,500 words, standing in stark contrast to health literacy
      recommendations. Addressing the poor health literacy of neurocognitive feedback evaluations
      has two primary problems. First, these reports often have multiple intended audiences beyond
      caregivers, including teachers, school psychologists, physicians, and other professionals
      working with the child. These individuals may benefit from more detailed and technical
      information. In addition, some of the wording used in neurocognitive reports is standardized
      and can lose meaning or be technically incorrect if simplified. Thus, it appears essential to
      evaluate whether the addition of a health-literate passport card will help address
      disparities in understanding of results and patient/family follow-through after receiving a
      neurocognitive evaluation.

      This study is innovative in being the first to our knowledge to investigate the use of a
      tangible tool, namely a "passport" style printed card, to address health literacy concerns by
      conveying the most important findings and recommended follow-up after completion of a
      neurocognitive evaluation. In other contexts, healthcare passport cards have demonstrated the
      ability to improve communication among families and other providers, make information and
      recommendations portable, and enhance continuity of care. However, the use of passport cards
      has not been evaluated as a potential solution to the problem plaguing neuropsychological
      evaluations, namely the provision of overly lengthy and complex reports following testing.
    

Intervention name(s): Passport Card; No Passport card
Intervention type(s): Behavioral; Behavioral
Intervention description(s): After receiving neurocognitive testing, caregivers in the health-literacy group will be provided with a color-coded "passport" (a two-sided wallet-sized card) highlighting key findings and recommendations along with their written report. Then, approximately 7 - 14 weeks after testing, caregivers will complete a brief questionnaire in person during their follow-up clinic visit or via phone if necessary. The person completing the parent/caregiver/guardian report must have been present for the evaluation and feedback session and must be the parent/caregiver/guardian who received the feedback passport card and evaluation report.; After receiving neurocognitive testing and verbal feedback from the psychologist, approximately 7 - 14 weeks after testing, caregivers will complete a brief questionnaire in person during their follow-up clinic visit or via phone if necessary. The person completing the parent/caregiver/guardian report must have been present for the evaluation and feedback session and must be the parent/caregiver/guardian who received the feedback and evaluation report, but not the passport card.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Single (Investigator)
Primary purpose: Health Services Research
Keywords: Health Literacy; Neuropsychology; Hematology; academic achievement