Assessment of Personal Medical History Knowledge in Adolescents with Sickle Cell Disease: A Pilot Study
From the Departments of Psychology (Ms. Zhao, Drs. Russell, Wesley, and Porter) and Hematology (Mss. Johnson and Pullen, Dr. Hankins), St. Jude Children’s Research Hospital, Memphis, TN.
Abstract
- Background: Children with sickle cell disease (SCD) are surviving into adulthood. Mastery of disease knowledge may facilitate treatment continuity in adult care.
- Objective: To assess the accuracy and extent of medical history knowledge among adolescents with SCD through the use of a personal health record (PHR) form.
- Methods: 68 adolescent patients with SCD (52.9% male; mean age, 16.8 years; 100% African American) completed a PHR listing significant prior medical events (eg, disease complications, diagnostic evaluations, treatments). Responses were compared against participants’ electronic medical record. An agreement percentage was calculated to determine accuracy of knowledge.
- Results: Most adolescents correctly reported their sickle cell genotype (100%), usage of penicillin (97.1%), prior hospitalizations (96.5%), history of prior blood transfusions (93.8%), usage of hydroxyurea (88.2%), and allergies (85.2%). Fewer adolescents accurately reported usage of opioids (52.9%), prior acute chest syndrome events (50.9%), baseline hemoglobin (41.8%), and hepatitis (43.3%), pneumovax (30.2%), and menactra (14.5%) vaccinations.
- Conclusion: Adolescents are aware of most but not all aspects of their medical history. The present findings can inform areas of knowledge deficits. Future targeted interventions for transition education and preparation may be tailored based on individual disease knowledge.
Sickle cell disease (SCD) is a genetic disorder characterized by abnormal sickle hemoglobin resulting in chronic hemolytic anemia and vaso-occlusion [1]. More than 95% of children with SCD in the United States survive into adulthood; however, young adults (YAs) are at risk for mortality shortly after transfer to adult health care [2–5]. Specifically, YAs with SCD (ages 18 to 30) have increased hospital utilization, emergency department visits, and mortality compared to other age-groups [4–7]. During this critical period, transition preparation that includes improving disease literacy and ensuring medical history knowledge may be necessary for optimal outcomes.
In the extant YA literature, significant gaps in medical history knowledge during the transition period were observed in pediatric cancer and inflammatory bowel disease patients [8,9]. YAs often require multidisciplinary management of their chronic disease complications [10]. Therefore, possessing comprehensive knowledge of personal health history may facilitate communication with different adult care providers and promote continuity of care. In the SCD transition literature, transition readiness measures have been developed to assess several aspects of knowledge, including medical and disease knowledge; however, these measures are primarily self-reported perceptions of knowledge and do not evaluate the accuracy of knowledge [11,12]. The current pilot study addresses this gap with the aim of assessing medical history knowledge accuracy in adolescents with SCD.
Methods
Participants
From March 2011 to January 2014, adolescents (aged 15–18 years) with SCD (any genotype) were approached during their regular health maintenance visits by hematology social workers. They were invited to complete the Personal Health Record (PHR) as an implementation effort of transition preparation within our pediatric SCD program.
Personal Health Record
The PHR was developed through literature review and discussions with area adult hematologists. The form was modeled after first visit intake forms used in adult hematology clinics. It was reviewed by the hematology medical team and the institution’s patient education committee. Prior to implementation, the form was piloted to obtain patient feedback on format and content. The PHR consists of 33 questions with 168 possible items/data points covering 12 domains: personal information (eg, contact information, SCD genotype), health provider information, personal health history (ie, health diagnoses), blood transfusion history, sickle cell pain events, hospitalization history in the previous year, diagnostic testing history (eg, laboratory tests), current medications, immunizations, advance directives, resource information (eg, disability benefits), and activities of daily living. Some questions required patients to check “Yes” or “No” (eg, “Have you been hospitalized in the past year? Have you received flu vaccine?”) while some required a written response (eg, “What medicines do you currently take?”).
Adolescents were instructed to complete the PHR independently without the help of their caregivers. After completing the form, the social worker reviewed the answers and/or asked participants’ perspectives about communicating health information to providers. A copy of the completed PHR was provided to the adolescent to promote continued education regarding medical history knowledge. The retrospective review of the PHR answers and participants’ characteristics was approved by the institutional review board with a waiver of consent from participants.
Statistical Methods
PHR answers were compared with each individual’s electronic medical record (EMR) for accuracy of responses. PHR responses were considered accurate only if they matched the information in the EMR. PHR items absent in the EMR were not coded (inability to verify the accuracy of responses) to capture the most accurate depiction of adolescents’ medical history knowledge. Coding was checked by at least 2 coders for response accuracy. Due to lack of EMR information for certain items, we could not verify the accuracy of many PHR items. Therefore, only items with at least 75% of data verified (across all patients who completed the PHR) were included in subsequent analyses.
Using SPSS (version 18), an agreement percentage was calculated for each patient across verifiable items and used as the primary outcome measure of knowledge accuracy. We used t tests to investigate gender or genotype differences in medical history accuracy. To examine genotype differences, we stratified the sample by SCD genotype: HbSS/Sβ0 thalassemia and HbSC/Sβ+ thalassemia [13].
