Assessment of Personal Medical History Knowledge in Adolescents with Sickle Cell Disease: A Pilot Study

Journal of Clinical Outcomes Management. 2016 June;June 2016, VOL. 23, NO. 6:

June 8, 2016|Journal of Clinical Outcomes Management

Mimi S. Zhao, MA;Margery Johnson, LCSW;Amanda Pullen, MSSW, LCSW;Kathryn M. Russell, PhD;Kimberly M. Wesley, PsyD;Jane S. Hankins, MD, MS;Jerlym S. Porter, PhD, MPH

Results

Patient Characteristics

During the period of analysis, there were 95 eligible adolescents with SCD; all were approached, and 68 (71.6%) completed the PHR. Reasons for non-completion included recurrent missed visits, lack of time during the visit, or refusal. Of the 68 who completed the PHR, all were African American, 52.9% were male, and their mean age was 16.8 (± 0.9; range, 15–18) years (Table). Completion of the PHR took on average 15 minutes.

Knowledge Accuracy Among Adolescents with SCD

Seventeen items in 6 PHR domains had the highest number of data points (at least 75% verified), and therefore were the only items that could be analyzed. Analyzed items included information about sickle cell genotype, eye doctor care, comorbid health issues (eg, asthma), allergies, hospitalizations, surgeries, transfusions, acute chest syndrome (ACS) episodes, eye problems, baseline hemoglobin level, and vaccination history as well as adolescents’ knowledge of current medications, including hydroxyurea, penicillin, and opioid pain medications.

The accuracy of knowledge for select items is presented in the Figure. Adolescents were accurate reporters of SCD genotype (100%), hospitalizations in the previous year (96.5%), transfusion history (93.8%), and allergies (85.2%). Knowledge deficits included previous diagnosis of ACS (50.9%), baseline hemoglobin levels (41.8%), and hepatitis (43.3%), pneumovax (30.2%), and menactra (14.5%) vaccinations. Regarding current medications, adolescents were more accurate at reporting penicillin (97.1%) and hydroxyurea (88.2%) utilization, but less accurate regarding opioid pain medications (52.9%). No participants were able to report their health history with 100% accuracy.

Gender was not significantly associated with overall accuracy (P = 0.36). A significant difference was found in sickle genotype such that individuals with HbSC/Sβ+ thalassemia genotype (mean number of items, 8.23; SD = 1.70) were more accurate reporters of their medical history than those with HbSS/Sβ⁰ thalassemia genotype (mean number of items, 7.14; SD = 1.75; t(65) = –2.59, P = 0.01). Specifically, those with HbSS/Sβ⁰ thalassemia genotype were significantly less accurate reporters of vaccination history (meningococcus t(60) = 3.55, P = 0.001; pneumococcus t(60) = 2.46, P = 0.02; hepatitis t(64) = 2.18, P = 0.03, eye problems t(62) = 3.62; P = 0.001, and surgical history t(62) = 2.14, P = 0.04).

References