Letter: Extending the Measurement of Inflammatory Bowel Disease Severity to Include Patient Important Outcomes

Abstract

I enjoyed reading the article by Swaminathan et al. highlighting the noninflammatory burden of IBD [1]. The inclusion of quality-of-life measures such as fatigue, psychological symptoms, sexual function and disability would certainly add value to disease-driven treat-to-target outcomes. With several validated questionnaires available (and listed in table 2 of their article [1]), the inclusion of quality-of-life indicators in disease severity indices may be relatively easy for researchers to implement. The use of these types of measures for IBD is further normalised in clinical practice by their inclusion in patient management software such as Crohn's Colitis Care (CCCare) [2]. To reduce respondent burden and simplify the analysis, it may be tempting to use streamlined ‘short form’ versions of questionnaires, which have a limited number of questions and/or constrained multiple-choice answers. However, it should be noted that the use of different validated quality-of-life measures can lead to different conclusions as demonstrated in a study on life after proctocolectomy for ulcerative colitis [3]. Furthermore, it is unclear whether the existing quality-of-life measures go far enough to capture and reflect the factors that matter to patients themselves. Patients' expectations are growing with many wanting to express their preferences through shared decision-making. Patient preferences have become even more relevant in the current environment as new therapeutics are being introduced with limited prognostic indicators available to predict response or guide sequencing choices around these new medications [4].

Qualitative methods such as focus groups provide another approach to elicit information about the factors that are important to patients. Schoefs et al. used this technique to describe unmet needs and determine the treatment outcomes relevant to patients with IBD [5]. Their results emphasised factors such as the psychological burden of ‘uncertainty’, which included worries about unpredictable symptoms and urgency, medications losing efficacy, the need for future ostomy surgery and the risk of nutritional deficiencies and intestinal failure as a result of repeated surgeries [5]. Other factors, such as changes in physical appearance and weight gain, were seen as major issues reducing quality of life [5]. The importance placed on these factors by patients can be contrasted with the often physician-determined quality-of-life indicators that appear in standardised surveys. If the real drivers of patient quality of life are not understood or acknowledged, it will be a continuing struggle to truly improve quality of life from a patient perspective.

Another way to incorporate patient preferences and perspectives is through the inclusion of patient advocates as part of project teams. This partnership approach is commonly used when researching other vulnerable groups such as indigenous populations [6]. The consensus guidelines on extraintestinal manifestations of IBD are a recent example of including IBD patient advocates as part of an interdisciplinary approach [7].

In summary, I appreciate Swaminathan et al. inclusing quality-of-life indicators in the measures of disease severity. Their willingness to address difficult-to-discuss topics such as sexual functioning will no doubt have benefits for patient well-being. I hope this can extend further with wider recognition and understanding of the IBD outcomes that patients themselves deem important.