Research Article: Integrating Interactive Web-Based Technology to Assess Adherence and Clinical Outcomes in Pediatric Sickle Cell Disease

Date Published: June 4, 2012

Publisher: Hindawi Publishing Corporation

Author(s): Lori E. Crosby, Ilana Barach, Meghan E. McGrady, Karen A. Kalinyak, Adryan R. Eastin, Monica J. Mitchell.


Research indicates that the quality of the adherence assessment is one of the best predictors for improving clinical outcomes. Newer technologies represent an opportunity for developing high quality standardized assessments to assess clinical outcomes such as patient experience of care but have not been tested systematically in pediatric sickle cell disease (SCD). The goal of the current study was to pilot an interactive web-based tool, the Take-Charge Program, to assess adherence to clinic visits and hydroxyurea (HU), barriers to adherence, solutions to overcome these barriers, and clinical outcomes in 43 patients with SCD age 6–21 years. Results indicate that the web-based tool was successfully integrated into the clinical setting while maintaining high patient satisfaction (>90%). The tool provided data consistent with the medical record, staff report, and/or clinical lab data. Participants reported that forgetting and transportation were major barriers for adherence to both clinic attendance and HU. A greater number of self-reported barriers (P < .01) and older age (P < .05) were associated with poorer clinic attendance and HU adherence. In summary, the tool represents an innovative approach to integrate newer technology to assess adherence and clinical outcomes for pediatric patients with SCD.

Partial Text

Sickle cell disease (SCD) is a genetic red blood cell disorder characterized by the sickling of red blood cells resulting in pain episodes, organ damage, risk for infections, and decreased life expectancy [1]. Care guidelines for SCD recommend that patients attend routine clinic appointments one to two times per year and more frequently if there are complications or if clinical monitoring is needed to assess tolerance to medications and other treatments [1, 2]. Preventative care such as flu shots, immunizations, and monitoring labs is also essential to effectively manage sickle cell disease [3]. Hydroxyurea (HU), which is used to increase fetal hemoglobin (Hb F), has been shown to decrease morbidity and mortality in patients with SCD [4]. Studies have indicated that daily oral HU use is associated with reduced pain crises, hospitalizations, acute chest syndrome, and transfusions and improved growth and health-related quality of life [5–9]. Thus, the consequences of nonadherence to clinic attendance and HU treatments result in increased morbidity [10], healthcare costs [11], and decreased quality of life [12].

Data presented in this paper are from the baseline assessment of a larger longitudinal study being conducted at a tertiary urban pediatric medical center in the Midwest. Eligible participants were patients of a comprehensive SCD clinic, age 6 to 21 years (and their caregivers), and prescribed hydroxyurea (HU) therapy or referred by clinic staff for attendance problems. Patients who had significant health complications (e.g., acute illness, recent stroke) that would interfere with the completion of the study or significant cognitive or developmental disabilities were excluded due to the demand on participants to understand questions in the assessment. Of the 182 patients in the clinic, 98 were eligible based on the above criteria. To date, 47 patients have been enrolled in the study with 4 being withdrawn because they no longer met criteria; thus, data will be presented on the 43 participants in the sample. Potential participants were identified by the clinical staff and the research team confirmed eligibility criteria. All participants were approached during a scheduled clinic visit. After obtaining consent, data collection proceeded at that visit.

This study highlights the potential to efficiently integrate interactive web-based technology in a clinic-based setting to assess treatment adherence, patient experience of care, and disease-specific outcomes in pediatric SCD. This study is significant as it piloted an innovative and high quality assessment process for capturing adherence data, including the barriers to adherence and potential solutions for addressing these barriers. The data from the tool showed a number of interesting trends. First, the tool proved to be a useful means for collecting data to understand adherence to clinic visits. Self-reported adherence to clinic visits was consistent with data from patients’ EMR as both sources revealed a 12-month clinic attendance adherence rate (“always coming” and “attending all visits”) of approximately 50%. It should be noted that the number of missed visits and adherence may be relative given that patients had 2 to 17 visits scheduled over the course of the year based on the complexity of treatments and disease-related complications (e.g., hospital discharge followup). Taken together, these findings suggest that nearly 85% of all scheduled clinic visits were attended by participants in this study. Understanding barriers to nonadherence was also important, especially given that adherence to clinic visits does not take into account cancellations, same day cancellations or rescheduled visits as a nonattended visit. Finally, data from the Take-Charge Program was integrated with patients’ EMR data providing a wealth of data to inform clinical practice in “real time.”




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