A first-of-its-kind computer program developed by researchers now at the University of Illinois at Chicago College of Nursing will be used to study how individuals with sickle cell disease can manage the pain associated with the inherited blood disorder.
The $2.9 million four-year study will assist adult patients at the University of Illinois Medical Center at Chicago Comprehensive Sickle Cell Center by using computers to educate them about pain management and provide information to their health care providers.
Affecting more than 70,000 Americans, sickle cell disease causes red blood cells to become hard and pointed instead of soft and round. Sickle cell disease can cause organ damage, stroke and excruciating pain.
Episodic pain is the hallmark of sickle cell disease, often causing absenteeism from school and work and requiring emergency care and hospitalization, Wilkie said.
"Although therapies to manage pain and normalize a patient's life are readily available, significant barriers often impede patient reporting and providers prescribing these treatment methods," she said. "Sickle cell-related pain, however, can be partially or totally relieved through deliberate use of medications and learned behavioral interventions, such as patient education."
During the first phase of the two-part study, 250 sickle cell patients will use a pen tablet computer with a touch screen to show their physician exactly where their pain is located. Patients can also mark boxes alongside words to describe the pain and numerically rate how much pain they have.
In some clinical practice settings, Wilkie said, pain assessment is hindered by infrequent use of pain assessment tools, leading providers to disbelieve the severity of the pain or fear patients will become addicted to pain medications. In these cases, providers may under-prescribe treatment or administer placebos.
"The sickle cell pain management process is complex and often requires more time than is available during a typical doctor's appointment," Wilkie said. "Managing sickle cell pain requires new strategies. Fortunately, recent advances in computer technologies provide innovative opportunities to improve effectiveness of pain management."
In the second phase of the study, the same 250 patients will be used to compare the computer program to a physician's usual care. Half of the patients will receive care without providing pain information via the computer program.