Author: Laurie Keefer, PhD, AGAF

Professor of Medicine and Psychiatry, Icahn School of Medicine at Mount Sinai
New York City, New York

When you think about the last few patients with inflammatory bowel disease (IBD) you have managed, what were the outcomes you cared about?  Deep remission? Mucosal healing? Improved IBD-related quality of life?

Over the 20 years I have practiced as a gastrointestinal (GI) health psychologist, I have observed a critical shift in how we talk to patients about their IBD. Early in my career, my focus was helping patients navigate the challenges they faced as they tried to prepare for and/or lengthen the time between expected flares or, too often, determine the best ways to delay what was an almost inevitable surgery. This reactive, “fingers crossed” approach to IBD not surprisingly fostered mental anguish—patients had to manage the unpredictability of their disease along with embarrassing symptoms, the trauma of medical emergencies, and unwelcome, sometimes serious, side effects from medications. When the IBD community finally started to ask patients about their emotional health, we—not surprisingly—saw astronomically high rates of depression, anxiety, and post-traumatic stress.

In 2021, with all of the progress we have made in IBD care, we get to share, at least with a subset of patients, a considerably more optimistic narrative. We talk about where they fit in terms of disease risk, and emphasize the importance of early, effective therapy to prevent bowel wall damage and disease progression, not just to decrease symptoms or time to flare. Perhaps most importantly, we confidently tell our patients that true healing (mucosal, clinical, emotional) is everyone’s shared goal. We tell them we expect them to “live well” with IBD.

But what does it really mean to “live well” with IBD? This question is more complex than it sounds.

The World Health Organization defines wellness as “a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity.” As such, wellness is the proactive pursuit of one’s personal best health possible across multiple life domains. Subjective well-being—the way an individual’s well-being is usually measured—is defined as the extent to which someone is satisfied with their ability to reach their potential, do meaningful work, have strong, positive relationships with others, and contribute to their community. As you can imagine, wellness, or life satisfaction, is highly dependent on the individual IBD patient—their background, their setting or geography, and their opportunities to thrive.

While we are considerably more rigorous in our approach to measuring physical IBD outcomes, we are still falling short in how we evaluate the impact of our care on patient wellness. Commonly used patient-reported outcome measures, such as the IBD Questionnaire, focus on the ways in which GI symptom relief achieved through medical therapies reduces the impact of symptoms on the patient’s social, emotional, and occupational life, including time off work due to IBD, worries about need for surgery, or delay of a social event because of IBD. As such, disease-specific quality of life almost inevitably improves as IBD symptoms improve. But are patients whose inflammation is under control, and whose disease-specific quality of life is normalized, actually well? Is the patient thriving or living up to their individual potential? 

There are some practical benefits of shifting our metrics away from disease-specific quality of life towards more holistic measures of wellness. First, existing measures of subjective well-being—such as Diener’s Satisfaction with Life Scale, Watson’s Positive and Negative Affect Scale, Kjell’s Harmony in Life Scale—are psychometrically less influenced by fluctuations in physical health, transitions in life, or single adverse events. They can therefore be administered less often and represent a broader picture of the patient’s functioning, agnostic to their IBD state. Think of it as a way to maintain tight control over emotional healing.

Finally, as our IBD community prioritizes reducing disparities in IBD care, a shift toward the metric of well-being affords us the opportunity to understand a patient’s life satisfaction and disease outcomes in context of their socioeconomic, cultural, racial, and educational background, and not just with respect to their IBD phenotype, symptoms, or experiences with care. To facilitate open discussion about wellness, we can ask our patients the question, “All things considered, how satisfied are you with your life as a whole these days?”

Just a thought: Next time you set your goals for an individual patient, will you add “living well?”

Dr Keefer will make a presentation on the topic of living well with IBD at the upcoming virtual Crohn’s and Colitis Congress, January 21-24, 2021.