Home-based Pain Management Protocol for Children With Sickle Cell Disease

"Home-Based Pain Management Protocol for Children with Sickle Cell Disease"

BACKGROUND: Sickle cell disease (SCD) is a devastating chronic health condition that primarily affects African-Americans. Painful episodes are the most frequent form of morbidity in SCD and the most frequent reason for hospitalization. Cognitive-behavioral interventions for pain management have shown efficacy for improving coping abilities, reducing the amount of medication needed to manage pain, and improving daily functioning during painful episodes. However, difficulties with disseminating and implementing cognitive-behavioral treatments have resulted in almost no use of these techniques in pediatric settings. In South Carolina these difficulties are compounded by social and geographical factors that pose particular challenges. A major issue with implementing quality pain management protocols is the difficulty with providing adequate practice and monitoring of the use of the techniques, particularly given the rural population in South Carolina and transportation difficulties for economically disadvantaged families. Due to a history of under-treating pain in SCD it is also critical that psychological and medical treatments are presented in an integrated manner so that these approaches are viewed as complimentary, not mutually exclusive, approaches to pain management. Finally, we believe the same implementation issues for improving the use of behavioral coping skills are also important for improving adherence to medication protocols for appropriate home-based pain management.

PURPOSE: The purpose of this research is to implement and evaluate a pain management protocol that uses portable electronic devices (PDA) and other technologies to increase the practice of psychosocial pain management techniques, improve adherence to the overall biopsychosocial pain management protocol, and improve the clinician's ability to track progress with fewer office visits. In addition to addressing important dissemination issues, by embedding methods to assess for adherence into the technology it will be possible to continuously evaluate and modify protocol efficacy, resulting in a product that is effective, empirically sound, and flexible.

STUDY PROCEDURES:

Recruitment and Assignment to Study Conditions. Families will be approached as part of their routine psychosocial screenings currently conducted at the Children's Cancer and Blood Disorder Center. Parental informed consent and child assent will be obtained from families who meet inclusion criteria and agree to participate. Next, participants will be randomly assigned to waitlist control or intervention groups through the use of a random assignment procedure. The researcher will explain details of the participation incentive system to the families at this time, including the number of coupons assigned for each phase of study completion and how to redeem coupons for toys and gift cards. All participants (waitlist control group and intervention group) will complete the initial measures: Background Information Questionnaire ; Structured Pain History Interview - Parent and Child Forms; Coping Strategies Questionnaire (CSQ); Pediatric Quality of Life Inventory (PEDS-QL); Pediatric Pain Questionnaire (PPQ); Child Health Locus of Control during the initial meeting and the second set of measures (CSQ, PEDS-QL and PPQ) 4 weeks after the initial meeting.