Effectiveness of a Computerized Tool (PAINRelieveIt) to Help Manage Pain Related to Sickle Cell Disease
Effectiveness of a Computerized Tool (PAINRelieveIt) to Help Manage Pain Related to Sickle Cell Disease
Sickle cell disease (SCD) is a blood disorder that is characterized by intense, painful
 episodes known as sickle cell crises. This study will evaluate the effectiveness of
 PAINRelieveIt, a three-part computer-based pain management tool, in treating adults with SCD.
SCD is an inherited blood disorder that mainly affects people of African, Mediterranean, or
 Latin descent. Symptoms include anemia, infections, organ damage, and painful sickle cell
 crises. Adults with SCD who experience frequent painful crises are more likely to die sooner
 than are adults with SCD who have fewer painful crises. Experts suggest that SCD pain be
 treated in the same way that cancer pain is treated because both types of pain are sustained
 and severe. However, unlike the research directed towards cancer pain, research focused on
 the characteristics of SCD pain has been limited. Although medications are available to treat
 SCD pain, the SCD pain management process is complex and often requires more time than what
 is available during the typical medical appointment. Recent advances in computer technologies
 may provide an opportunity to improve the effectiveness of SCD pain management by combining
 online patient education with decision-making support tools for doctors. This study will
 evaluate three touch screen computerized tools that are known collectively as PAINRelieveIt.
 The three tools include the following:

 1. PAINReportIt-a pain assessment data collection tool

 2. PAINUCope-a multimedia patient education program tailored to the participant's SCD pain
 management misconceptions

 3. PAINConsultN-a decision support tool for doctors that will provide algorithm-based pain
 medication therapies tailored to each participant's pain level

 This two-part study will evaluate the effectiveness of PAINReportIt and PAINUCope, alone and
 in combination with PAINConsultN, at improving participants' SCD pain by educating
 participants about their role in pain management and by providing decision-making support to
 doctors.

 This study comprises two parts. Part 1 of the study will enroll patients who are receiving
 care at the University of Illinois at Chicago Sickle Cell Clinic. The patients will be
 randomly assigned to receive 3 months of either access to PAINReportIt and PAINUCope or usual
 care. At baseline and Month 3, participants will complete questionnaires on misconceptions
 about pain, medication adherence, and pain intensity. The same participants from Part 1 of
 the study will be enrolled into Part 2 of the study, which will last 2 years. Part 2
 participants will be randomly assigned to receive either care from doctors who have access to
 PAINConsultN or usual care. All participants will have access to PAINReportIt and PAINUCope.
 At baseline and Year 2, participants will complete questionnaires on pain episodes.
 Information will also be collected from doctors, including pain documentation,
 appropriateness of prescribed pain medications, and the number of emergency department visits
 by and hospitalizations of participants experiencing painful SCD crises.
Inclusion Criteria:

 -  Diagnosed with SCD

 -  Scheduled for continuing care at the University of Illinois at Chicago Sickle Cell
 Clinic

 -  Experienced a moderate to severe level of pain (at least 3 on 0 to 10 scale) related
 to the SCD within the 12 months prior to study entry

 -  Had a emergency department visit or hospitalization within the 2 years prior to study
 entry

 -  Speaks and reads English

 Exclusion Criteria:

 -  Legally blind

 -  Physically unable to complete study questionnaire