Demographic, neurocognitive, disease impact, and social characteristics of patients served by embedded neuropsychological services in an adult sickle cell clinic

Abstract Individuals with sickle cell disease (SCD) face elevated risk of neurocognitive and psychosocial difficulties due to medical factors and social determinants of health (SDoH; e.g., income, healthcare access, environmental deprivation), highlighting the need for neuropsychological evaluation (NPE). However, NPE access is often limited by systemic barriers (e.g., insurance coverage, provider access/availability). Prior research has described benefits of NPE for healthcare cost reduction, however requires replication. This study describes characteristics and correlates of SDoH in patients with SCD served over 8 months by a grant-funded neuropsychological service embedded in an academic medical center (AMC) SCD clinic. The goal of this study is to inform providers of the value of embedded, accessible NPE for patients with SCD. Descriptive statistics were computed on sociodemographic, normative neurocognitive, and self-report data from 34 adults with SCD who completed focused NPE at a public, urban AMC SCD clinic. Demographically-corrected neurocognitive performance scores were derived from standardized tests, including the California Verbal Learning Test – 3rd Edition – Brief Form, Trail Making Test, Wechsler Adult Intelligence Scale – 4th Edition Digit Span and Coding subtests, and Wisconsin Card Sorting Test. Composite indices of memory, complex attention, processing speed, and flexible problem solving were derived from means across subtests. Self-report of SCD impact was measured by the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) standardized T-scores. SDoH variables included insurance type (i.e., private, Medicare, Medicaid), area deprivation index (ADI, national percentile), and years of education. Multivariate analyses of variance (MANOVA) compared cognitive performance and SCD impact by insurance type. Pearson correlations evaluated associations between ADI and cognitive , education, and ASCQ-Me variables. Of 61 patients referred for NPE, 34 completed testing. Scheduling was complicated by 10 no-shows, 14 reschedules, and 2 hospitalizations. Of those who completed NPE, mean age was 37.1 years (range=22-72), education 13.9 years, and ADI national percentile was 62.2 (range=23-92). All patients were Black. All patients were insured (private n=6; Medicare n=11; Medicaid n=17). Cognitively, group performance was average for auditory learning (42%ile) and composite memory (50%ile). Composite complex attention, processing speed, and flexible problem-solving were low average (19-21%ile). Self-reported pain crisis frequency and severity, and SCD impact on social functioning and sleep were average (30-55%ile). Self-reported pain, stiffness, and emotional impact were below average (9-13%ile). Following NPE, the most frequent recommendations were additional social work intervention (n=18), more detailed outpatient NPE (n=12), cognitive compensatory strategies (n=12), behavioral sleep strategies (n=10), psychotherapy (n=10), and school/work accommodations (n=5). MANOVA for cognitive performance and self-reported SCD impact (Vs=0.49-0.50, η2ps=.25, ps=.23-.72) by insurance status were not statistically significant, however had very large effect sizes. ADI was not correlated with any cognitive variable and ADI and education were not correlated with any SCD impact variable (rs < .20, ps > .05). This study described sample characteristics and SDoH correlates among adult SCD patients who accessed embedded NPE in a public AMC outpatient SCD clinic. Cognitive performance and self-reported disease impact were within normal limits. However, several patients were referred for more comprehensive evaluation, work/school accommodations, and social services. Although patients did not significantly differ on cognitive performance or SCD impact by insurance status, large effect sizes suggest meaningful differences may exist, however detection was limited by low statistical power. Conversely, variance in cognition and SCD impact is independent of ADI and education, as correlations were weak and nonsignificant. Collectively, results emphasize the importance of NPE access for all SCD patients. Limitations include small sample size and selection bias, as patients who did not complete NPE may differ from this sample. Additional research is required as additional longitudinal data are collected.