Employing irritable bowel syndrome patient-reported outcomes in the clinical trenches

Although past literature has reported inconsistent benefits of using PROs in clinical practice,⁵ including that from our own work,⁶ there is a growing number of studies that have noted improved clinical outcomes through employing PROs.^7-9 A compelling example is provided by Basch et al,⁷ who randomized patients receiving chemotherapy for metastatic cancer to either weekly symptom reporting using electronically delivered PRO instruments vs. usual care, which consisted of symptom reporting at the discretion of clinicians. Here, they found that the intervention group had higher HRQOL, were less likely to visit the emergency department, and remained on chemotherapy for a longer period of time. Interestingly, the benefits from PROs were greater among participants who lacked prior computer experience vs. those who were computer savvy. Basch et al⁹ also noted that the use of PROs extended survival by 5 months when compared with the control group (31.2 vs. 26.0 mo; P = .03). Longitudinal symptom reporting among IBS patients using PROs, when implemented well, may similarly lead to improved patient satisfaction, HRQOL, and clinical outcomes.

Measuring PROs in the clinical trenches

PROs generally are measured with patient questionnaires that collect data across several areas, including physical, social, and psychological functioning. Although PROs may enhance the patient–provider relationship and improve communication and shared decision making, we acknowledge that there are important barriers to its use in routine clinical practice.¹⁰ First, many providers (and their patients) may find use of PRO instruments burdensome, and it can be time consuming to collect PROs from patients and securely transmit the data into the electronic health record (EHR). This can make it untenable for use in busy practices. Second, many gastroenterologists have not received formal training in performing complete biopsychosocial evaluations with PROs, and it can be difficult to understand and act upon PRO scores. Third, there are many PROs to choose from and there is a lack of measurement standards across questionnaires. These challenges limit widespread use of PROs in clinical practice, and it is understandable why most providers instead opt for informal measurement of symptoms and function. Later, we detail strategies for overcoming the earlier-described challenges in employing PROs in everyday practice along with relevant IBS PRO instruments.

IBS–specific PRO instruments

There have been several IBS-specific PRO instruments described in the literature, all of which vary in length, content, and amount of data supporting their validity (Table 1). Examples of IBS symptoms scales include the Adequate Relief measure, Irritable Bowel Syndrome Severity Scoring System, Gastrointestinal Symptom Rating Scale in IBS, Functional Bowel Disorder Severity Index, IBS Symptom Questionnaire, and Birmingham IBS Symptom Questionnaire.^15,24 There are also IBS-specific HRQOL instruments, such as the Irritable Bowel Syndrome Quality of Life measurement, Digestive Health Status Instrument, Functional Digestive Disorder Quality of Life questionnaire, Irritable Bowel Syndrome Health Related Quality of Life questionnaire, and IBS-36, among others.^21,24

Bijkerk et al²⁴ evaluated and compared the validity and appropriateness of both the symptom and QOL scales. Among the examined IBS symptom instruments, they found that the Adequate Relief question (Did you have adequate relief of IBS-related abdominal pain or discomfort?) is the best choice for assessing global symptomatology, and the Irritable Bowel Syndrome Severity Scoring System is optimal for obtaining information on more specific symptoms.²⁴ As for the QOL scales, the Irritable Bowel Syndrome Quality of Life measurement, which comprises 34 items, is the preferred instrument for assessing changes in HRQOL because it is the most extensively validated.²⁴ Bijkerk et al²⁴ also concluded that although the studied instruments showed reasonable psychometric and methodologic qualities, the use of these instruments in daily clinical practice is debatable because the measures (save for the Adequate Relief question) are lengthy and/or cumbersome to use. Because these instruments may not be practical for use during everyday care, this leads to a discussion of the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS), a novel approach to measuring PROs in the clinical trenches.