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A study of patient-reported distress measures

Dr. Itsvan Mucsi, M.D., Ph.D.
Toronto General Hospital
Biomedical Research Grant
2019 - 2021
$99,670
Quality of Life
Lay Summary
Chronic kidney disease is a life-changing illness. People living with chronic kidney disease have high rates of distress, such as anxiety, depression, social or physical difficulties, pain or sleep problems. When combined, these emotional and physical difficulties can lead to poor health outcomes for patients. For example, patients may fail to take their medication, end up in hospitals more often, have higher rates of other diseases or even die sooner. Their overall quality of life can suffer. However, the current treatment for kidney disease does not include methods for screening or treating distress symptoms. Thus, distress experienced by patients often goes unrecognized and undertreated.
 
Some doctors who treat patients with chronic illnesses use tools called Patient Reported Outcome Measures to detect distress and physical symptoms. These tools are usually computer- or paper-based questionnaires. They do better in recognizing distress than routine assessments by healthcare providers. Using Patient Reported Outcome Measures can improve doctor-patient communication and give patients a greater say in their care. It will also enhance their satisfaction with their treatment and can also help improve patients’ survival. Thus, the use of Patient Reported Outcome Measures in kidney care can improve patient care and should be of high priority. To do so, we need tools that are comprehensive, highly accurate, and not too long. To generate such tools, the National Institutes of Health developed a system called the Patient-Reported Outcomes Measurement Information System – Computer Adaptive Testing (PROMIS CAT). Its questions are designed to detect distress and symptoms both in healthy individuals and in patients with chronic diseases. Based on the answer to the previous question the computer will determine what the next best question will be for that particular participant.
 
Dr. Mucsi’s project will compare the PROMIS CATs to current questionnaires and investigate if they are precise enough to help clinicians detect distress. He will develop a toolkit to guide clinicians in using the PROMIS CAT in clinics and test if a subsequent study is feasible and acceptable for patients and healthcare professionals. He predicts that PROMIS CATs will become a useful tool for kidney care teams, helping them provide more effective, patient-centred care.