After discussing the results with the team, a medical provider reviewed the findings with the patient and family and developed a plan for pharmacologic pain management at home utilizing a stepwise approach based on the World Health Organization (WHO) analgesic ladder for selecting pain-relief drugs [4,5] and the American Pain Society guidelines for management of acute and chronic sickle cell pain [6]. The medication’s method of action, side effects, risks, and benefits were reviewed and prescriptions were provided as needed.
During the same visit, patients who reported acute or chronic pain within the last month met with the team psychology provider. The psychology provider educated the patient and family about pain, the mind-body connection, and nonpharmacologic approaches to pain management that could be incorporated in the home plan. Following the education, the psychology provider taught the patient at least one relaxation strategy (eg, diaphragmatic breathing, guided imagery, progressive muscle relaxation) and provided written materials to take home to encourage practice. At the time of discharge from the clinic, patients and families received a copy of the comprehensive home pain plan and any needed prescriptions for analgesics. Families were encouraged to access a copy of their plan at home by logging on to MyChart (Epic Systems), a limited version of the child’s EMR designed for patients and families.
After each ED or urgent care visit for uncomplicated SCD pain, the nurse care manager attempted to call the family within 3 business days to ask whether the home pain management plan had been used and determine if it needed to be revised. Medication refills were confirmed via phone follow-up by the nurse care manager at this time. Laminated pocket guides for the care managers facilitated and standardized the follow-up questions. A maximum of 3 attempts were made to contact the family. Information from the telephone encounter was documented in the patient’s EMR in a standard format and location. This information was then communicated to the SCD provider (nurse practitioner or physician) who modified the plan as needed. If the patient did not have any ED or acute care outpatient visits, the HPMP was reviewed every 6 months at a routinely scheduled comprehensive visit.
The team used multiple plan-do-study-act cycles (PDSAs) to refine the intervention and implementation process. One PDSA involved a focus group consisting of 3 young adult patients and 1 parent. Participants were asked if they knew what we were referring to when we used the term “home pain management plan,” what they remembered about their plan, and if they thought we should keep or change the name. All 4 participants reported that they were familiar with the term and were able to describe aspects of their or their child’s home pain management plan. Although 1 participant suggested shortening the name, the SCD team had worked to develop a high level of familiarity with the name, so it was retained. Another PDSA was conducted to assess whether the pediatric hematology fellows (post-graduate trainees) were aware of the HPMP and how to access it in the EMR. Eight of the 10 fellows responded, and the majority indicated that they were aware of the HPMP; however, only 1 fellow knew where to locate it in the EMR. This resulted in PDSAs to increase fellows’ awareness and use of the HPMP.