Document Type

Final Project

Graduation Date

Spring 5-7-2022

Degree Name

Doctor of Nursing Practice

First Advisor

Dr. Shirley Wiggins

Second Advisor

Dr. Amy Ford


Background: Vaso-occlusive (VOC) pain crisis in sickle cell pediatric patients is a hallmark symptom, and both unpredictable and crippling. There is a lack of evidence as to what is best practice to avoid a VOC pain crisis in pediatric sickle cell patients. Individualized Pain Plans were created and trialed based off the format asthma action plans with goals to improve overall pain management and to prevent or decrease emergency department visits and hospitalizations.

Aims: This is a cross-sectional and quality improvement study designed to evaluate the effectiveness of previously implemented Individualized Sickle Cell Pain Plans in a midwestern children’s hospital. The primary aim was to evaluate the physical and psychosocial risk factors related to the pain experiences in the post implementation timeline of receiving their individualized pain plan. The second aim was to evaluate the satisfaction and use by both parent and child of the pain plans.

Methods: Evaluation of outcomes of these plans were done by survey using the Pediatric Pain Screening Tool (PPST), satisfaction questionnaires, and chart audits of Emergency Department (ED) visits due to pain crisis pre and post implementation administered by the Hematology/Oncology (H/O) team.

Settings: This study was conducted at a midwestern children’s hospital and associated H/O clinic.

Participants/Subjects: Sample population included pediatric patients, aged four to 18 years old, who are diagnosed with sickle cell disease who have an individualized pain plan created by their Hematology provider, and their parent(s) and/or caregivers. Each patient/parent/caregiver gave verbal consent to participate.

Design: The data was collected at a routine follow up appointment at the H/O clinic. Surveys were administered at the appointments including the PPST, demographics, and a satisfaction/use survey for the patient and parent. A chart audit of ED visits due to pain crisis pre and post pain plan implementation was also performed.

Results: A total of eleven patients and eleven parents were captured in this study that qualified based on the inclusion criteria. 73% of responses being mostly satisfied and very satisfied with the pain plans, 27% of responses were sometimes satisfied and satisfied, and one response with no satisfaction. Eleven parents were asked how often the pain plans were being used and/or referenced, 18% said they were not using it and needed help with how to use it better, 9% use it when their child cannot sleep at night due to pain, 45% use it when their child cannot play or go to school due to pain, and 27% said they use it when their child tells them they have pain. Six patients were then asked how often they were using the pain plans, one said they do not use it because he lost it, one said they do not know how to use the pain plan, one said they use it when they cannot play, and three (50%) say they use it when an adult tells them to. When compared, the number of ED and inpatient hospital admissions (IHA) for each patient pre and post pain plan implementation, it was found that ED visits increased from pre (16 of 74 patients) to post (29 of 74 patients).

Conclusions: Individualized pain plans provide guidance for patients and families when a pain crisis begins. It is recommended that these pain plans be implemented at other pediatric hospitals across the nation to support patients with sickle cell disease and their families. It would be recommended that the clinic continue to collect data indefinitely due to the small sample population of this study as this could provide stronger evidence for the use of the individualized pain plans.