Patients often seek care because they experience symptoms that negatively affect their health-related quality of life (HRQOL). Health care providers must then elicit, measure, and interpret patient symptoms as part of their clinical evaluation. To assist with this goal and to help bridge the gap between patients and providers, investigators have developed and validated a wide range of patient-reported outcomes (PROs) across the breadth and depth of the human health and illness experience. These PROs, which measure any aspect of a patient’s biopsychosocial health and come directly from the patient, may help direct care and improve outcomes. When PROs are collected systematically, efficiently, and in the right place at the right time, they may enhance the patient–provider relationship by improving communication and facilitating shared decision making.1-3
Within gastroenterology and hepatology, PROs have been developed for a number of conditions, including irritable bowel syndrome (IBS), chronic idiopathic constipation, cirrhosis, eosinophilic esophagitis, inflammatory bowel disease, and gastroesophageal reflux disease, among many other chronic diseases. IBS in particular is well suited for PRO measurement because it is symptom based and significantly impacts patients’ HRQOL and emotional health. Moreover, it is the most commonly diagnosed gastrointestinal condition and imparts a significant economic burden. In this article, we review the rationale for measuring IBS PROs in routine clinical practice and detail available measurement instruments.
Importance of IBS PROs in clinical practice
IBS is a functional GI disorder that is characterized by recurrent abdominal pain and altered bowel habits (i.e., diarrhea, constipation, or a mix of both). It has an estimated worldwide prevalence of 11%, and total costs are estimated at $30 billion annually in the United States alone.4 Because of the chronic relapsing nature of IBS, along with its impact on physical, mental, and social distress, it becomes important to accurately capture a patient’s illness experience with PROs. This is especially relevant to patients with IBS because we currently lack objective measurable biomarkers to assess their GI symptom burden. Instead, clinicians often are relegated to informal assessments of the severity of a patient’s symptoms, which ultimately guide their treatment recommendations: How many bowel movements have you had in the past week? Were your bowel movements hard or soft? How bad is your abdominal pain on a scale of 1 to 10? However, these traditional outcomes measured by health care providers often fail to capture other aspects of their health. For example, simply asking patients about the frequency and character of their stools will not provide any insight into how their symptoms impact their HRQOL and psychosocial health. An individual may report only two loose stools per day, but this may lead to substantial anxiety and negatively affect his or her performance at work. Similarly, the significance of the symptoms will vary from person to person; a patient with IBS who has five loose daily bowel movements may not be bothered by it, whereas another individual with three loose stools per day may feel that it severely hampers his or her daily activities. This is where PROs provide value because they provide a key component to understanding the true burden of IBS, and accounts for the HRQOL and psychosocial decrement engendered by the disease.