A Patient Event Diary Improves Self-Management In Pediatric Sickle Cell Disease Patients

Promotion of chronic illness self-management is crucial to improve outcomes of children with sickle cell disease (SCD). Improvements in patient outcomes and quality of life as well as enhancement in health literacy and patient agency are also imperative. Through an event diary developed by the Bronx Lebanon Hospital Sickle Cell Program, our pediatric SCD patients are better able to track significant health events and health care appointments. This study seeks to validate the effectiveness of the patient event diary as a tool for improvement in self management, allowing for improvement in medication and clinic visit compliance, as well as in a reduction in number of emergency room visits. Additionally, the education section at the beginning of the diary has become an integral teaching tool and reference for patients and their families. It is our hypothesis that the event diary as an educational tool, a self management tool, and a tool for providers, will lead to better management of chronic illness and improved patient outcomes.

We utilized laboratory and demographic data from the Bronx Lebanon Hospital Center patient electronic medical record between July 2011 and July 2013. Our sample included a population of 50 sickle cell disease patients aged 0 to 21, median age being 7 years. Sickle cell disease types included SS (64%), SC (32%), Sβ⁺ thalassemia and Sβ⁰thalassemia (4%). We used a paired, two tailed t-test to assess patients’ medication compliance on vitamin D (22 patients) and hydroxyurea (14 patients) through 25-hydroxyvitamin D (25-OHD) and MCV (mean corpuscular volume) levels, respectively. Increased MCV was used as a proxy to indicate improved medication compliance in patients on hydroxyurea. We compared patients on hydroxyurea and vitamin D six months before receiving the event diary and six months after.

Additionally, we compared compliance with hematology clinic visits one year before and one year after receiving the event diary. We also compared the number emergency room visits during the year before and the year after patients received the event diary.

25-OHD data from six months after receiving the event diary showed significantly improved compliance with vitamin D treatment (M = 47, SD = 20) as compared to six months before receiving the event diary (M = 26, SD = 15), t(20) = 2.1, p < 0.05. Additionally, there was a statistically significant improvement in MCV levels six months after receiving the event diary (M=101.6, SD=9.6), as opposed to six months before receiving it (M=97.7, SD=5.6), t(12)=2.2, p<0.05. When looking at patient hematology clinic appointment compliance, there was an improvement, however not statistically significant, in compliance with appointments between one year before (M=33.3%, SD=41.7%) and one year after patients received the event diary (M= 27.2%, SD=30.3%), t(17)=2.1, p=0.2. Emergency department visits did decrease, however not significantly, one year before receiving the event diary (M=1.8, SD=2.5) to one year after receiving the event diary (M= 1.3, SD=1.9), t(47)=2.0, p=0.17.

These data suggest the patient event diary has significantly improved patient self-management. We believe this effect is due to enhanced understanding of disease processes and increased confidence and skills in self-management of the disease. There is improved compliance with hydroxyurea and vitamin D, as well as a trend toward improvement in clinic visit compliance and decreased emergency room visits. The patient event diary is crucial to improved patient outcomes in the pediatric SCD population, and may be useful for other pediatric populations with chronic illness. It is a significant part of our current practice and our ability to teach and empower patients and their families to manage sickle cell disease while at home. Additionally, this tool allows for better management of patients by providers. The event diary helps to elucidate difficulties in patient self-management and gives better insight into complications patients are experiencing at home. In the future, we hope to see that with improved patient knowledge of sickle cell disease and self-management facilitated by use of the event diary, there will be significantly fewer emergency room visits, fewer hospital admissions, and most important, quality of life.

Moulton:HRSA: Research Funding; New York State Grant: Research Funding.