We were able to exceed our goal of ensuring that at least 85% of eligible patients in our population had a home plan in place. This is clinically significant as most SCD pain episodes occur at home [11]. Typically, the pain management strategies used by patients and families at home are inconsistent, and several studies indicate that parents may be reluctant to use analgesics for their children, use a dose that is too small, or do not give the medicine often enough [12–14]. Developing an home pain plan with a patient and family allowed for education about distinguishing different types of pain and the appropriate use of medications for specific types of pain.
Challenges to implementation of the home plan protocol included limited time during clinics visit to integrate the plan given competing clinical issues. Some families felt the visit lasted too long and were eager to leave the clinic without further delays. Additionally, the fixed design of the EMR posed some limitations related to documentation, medication reconciliation, and updating of the home plan because different team members could not simultaneously access some parts of the EMR. We also initially overlooked the need to educate other providers in our division about the home plan, such as fellows who take calls about patients after hours. This has subsequently been addressed via ongoing PDSAs to test processes for making fellows aware of the home pain plan and to ensure they use it consistently to coordinate care.
Following implementation of the protocol, the percentage of ED visits for SCD uncomplicated pain decreased by 84%. These results build on the previous literature which has focused primarily on standardized pain management protocols in the ED [15–17]. However, it makes a unique contribution in that the focus was on systematically teaching families strategies to use at home with the goal of minimizing the need for ED or urgent care intervention. We also learned more about the reasons for some ED visits: there were patients who presented to the ED with presumed acute SCD pain that actually had acute exacerbations of chronic back pain (8 patients), headaches (5 patients), or abdominal pain due to constipation (12 patients). Each of these is managed differently than acute SCD pain, and the HPMP was not designed for these conditions. In addition, we discovered that a few patients (3 patients) used opiate analgesics for difficulties with sleeping rather than pain, further supporting the need for ongoing patient/family education about pain management in pediatric SCD.
We conclude that the home pain plan intervention served to empower patients with SCD and their families by providing them with the tools to manage uncomplicated pain events at home thereby reduce utilization of the ED. Hence, the home plan intervention has the potential to improve patient outcomes by decreasing avoidable ED visits and reducing overall health care costs. It is hoped that other clinics or hospitals could use QI methods to implement home pain plans that would allow achievement of similar outcomes. Finally, this paper contributes to the limited literature on both QI and home management in pediatric SCD and addresses a critical gap in the literature: a clinical approach to reducing potentially preventable ED visits and subsequent hospitalizations for youth with SCD. It also serves as the basis for future innovative research examining the relationship between a home pain management, health care utilization, and health care costs.