Effectiveness of a Computerized Tool (PAINRelieveIt) to Help Manage Pain Related to Sickle Cell Disease

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