PRACTICUM SUMMARY REPORT Name: Ebaa Jastaniah Team Members: Amy Sobota, Philippa Sprinz, Patricia Kavanagh and James Moses Project Title: Increasing Hydroxyurea Uptake in Children With Sickle Cell Disease University/Organization Name: Department of Pediatrics at Boston University School of Medicine Health System Sponsor Name: Boston Medical Center Aim of project (1-2 sentences) Our aim was to increase the initiation of hydroxyurea in children with sickle cell disease (SCD), whom are following up at the pediatric hematology clinic at Boston Medical Center (BMC). We aspired to increase the initiation of hydroxyurea by 20% before May 2013. Planned changes tested (2-3 sentences) We assessed the demographics of the active patients following up at the BMC hematology clinic. We identified our eligible sample and scheduled them for the educational appointments. We developed an educational module that was used during the educational session in order to improve the knowledge, beliefs and attitudes of the patients/guardians on hydroxyurea and ultimately its uptake. Predictions (2-3 sentences) We hoped to get a 100% of the eligible patients contacted and scheduled for the educational appointments. We also hoped that 100% of those who are scheduled would receive the educational session, score a 100% on the post-test knowledge assessment on hydroxyurea and score 5/5 on the likert scale question on likelihood of hydroxyurea initiation. Finally, we aspired that 50% of those receiving the education session initiate hydroxyurea. Results Present your results with a graph(s). Hydroxyurea education delivered n=10 30% Patient started hydroxyurea 70% Patient did not start hydroxyuea 4 100.0% 90.0% 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% 0.0% 3 2 1 0 I/my child I worry Doctor I don't I don't want do not get about side never told believe it to take a sick enough effects me about it will change daily anything medicine Other Frequency Cumlative % Figure 3: Pareto chart on the barriers of the utilization of hydroxyurea in sickle cell disease Summary of results (3-4 sentences): Of 181 active patients, 108 (61%) patients were considered eligible to take hydroxyurea. Among those eligible, 70 (65%) were already utilizing hydroxyurea. Thirty-eight patients (35.3%) were not currently on hydroxyurea. Seventeen (58.8%) patients scheduled appointments, of which 10 (41.1%) received the educational session. Eighty percent (80%) of the patients receiving the educational session scored 100% in the post-test assessment. The most common barrier for the utilization of hydroxyurea was that patients ‘do not feel sick enough’ to take it. The educational session led to a significant increase in the knowledge pretest score (median increment 0.34, p= 0.0039). Three out 10 patients (30%) initiated hydroxyurea. Learning (4-5 sentences) Comparison of questions, predictions, and analysis of data: In our first PDSA cycle, we aimed to reach out to all of the eligible patients who were not using hydroxyurea. However, not all of these patients were contacted due to a change in the eligibility criteria. A number of patients were not contacted due to invalid phone numbers. Of those contacted, 19% of them refused to schedule an appointment. The reasons were documented. Of those who scheduled appointments, 28% did not receive the educational session due to ‘no shows’. In the second PDSA, 80% of our patient scored 3/3 in the post-test knowledge assessment. Only 10% of the patients scored 3/3 in the pre-test assessment. There was an improvement in the patients' knowledge that is attributed to the educational tool kit (median score increment 0.34). In addition, 20% of our patients scored 5 on the likert scale. The median improvement in likelihood is 1. However, cognitive bias should be accounted for. Finally, 30% of the patients who received the educational material initiated hydroxyurea. There was a great resistance in the utilization of hydroxyurea and the most common barrier was that patients 'do not feel sick enough' to take it. Impact on systems (3-4 sentences) Discuss the project’s significance on the local system and any findings that may be generalizable to other systems: Hydroxyurea has proven to be effective in reducing morbidity and mortality in sickle cell disease. Increasing the initiation of hydroxyurea in patients is an initial step in improving the quality of healthcare in these patients and will reduce the overall financial burdens on the patients, healthcare providers and healthcare payers. Using the educational toolkit in hematology clinics in order to educate the patients about the role of hydroxyurea in sickle cell disease is encouraged given its significant effects on improving the patients’ knowledge, beliefs and attitudes on hydroxyurea. Conclusions (3-5 sentences) Summarize the outcome of the project. Is this project sustainable? What are the requirements for sustainability? Hydroxyurea utilization in sickle cell disease is fraught with challenges and barriers. Primarily, changing the patients’ perspectives on hydroxyurea is key to increasing its utilization. Continuing the educational programs in the BMC hematology clinics using the developed module with continuous tracking of how patients respond to it is encouraged. Due to lack of funding availability, organizational commitment to patient education and involvement may be compromised and challenged, which is a key factor in improving the knowledge and beliefs of patients with sickle cell disease. Reflections/Discussions (5-7 sentences) Discuss the factors that promoted the success of the project and that were barriers to success. What did you learn from doing this project? What are your reflections on the role of the team? First, the IHI practicum templates were very useful in guiding the learners throughout the entire projects. Although not part of the practicum, the bimonthly QI sessions that took place at BMC were helpful in reinforcing the QI concepts to learners. However, it would be of great value to have the direct mentor join the learner in the QI practicum process. This would allow for an improvement in the planning and the conduction of the project. The greatest take-home messages from this project are 1) The educational modules need to further address the perception of sickle cell patients on hydroxyurea and to emphasize that it is aimed to prevent future rather than emergent crises. 2) Leadership, management and teamwork in QI projects are very important factors in getting the most out of them, especially that QI projects ought to be dynamic and fast paced in order to be adaptive and reflective to their surrounding settings. By signing this document (electronic signature is acceptable), I attest that the information provided by the learners in this project is accurate. LEARNER(S): Signature: Signature: Printed Name: Ebaa Jastaniah, MD, MPH Printed Name: Area of Study: Public Health Area of Study: Signature: Signature: Printed Name: Printed Name: Area of Study: Area of Study: Signature: Signature: Printed Name: Printed Name: Area of Study: Area of Study: FACULTY SPONSOR: HEALTH SYSTEM SPONSOR (if different from faculty sponsor): Signature: Signature: Printed Name: James Moses, MD, MPH Printed Name: Institution: Institution: Boston Medical Center AUTHORIZATION Do the learners, faculty sponsor, and health system sponsor authorize this project for publication at www.ihi.org? ■Yes ☐ No