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Why I Promote “Activated” Patients in My IBD Practice

Millie D. Long, MD, MPH

Associate Professor of Medicine
Director,
Gastroenterology and Hepatology Fellowship Program
Vice-Chief for Education
Division of Gastroenterology and Hepatology 
University of North Carolina at Chapel Hill
Chapel Hill, North Carolina


Millie D. Long, MD, MPH, has disclosed that she has received consulting fees from AbbVie, Gilead Sciences, Janssen, Pfizer, Prometheus, Salix, Takeda, Target PharmaSolutions, UCB, and Valeant and funds for research support from Pfizer and Takeda.


View ClinicalThoughts from this Author

Released: July 13, 2021

Patients who understand their care and have the skills and confidence to manage its intricacies are considered to be “activated” patients. Highly activated patients in primary care have been shown to have better treatment adherence and fewer complications from hypertension, HIV, and other chronic diseases. Here, I discuss my research on patient activation in inflammatory bowel disease (IBD) and share how I apply it in my clinical practice.

Patient Activation in IBD
Successful management of IBD depends on patient adherence, so my colleagues and I investigated whether high levels of patient activation are associated with improvements in disease-related outcomes. In a large Internet cohort of patients with IBD, we administered baseline and follow-up assessments with a validated scale known as the Patient Activation Measure, which measures patient skills, knowledge, and motivation and classifies patients as having low or high levels of activation. We found that patients with high levels of baseline activation were more likely to report clinical remission during the follow-up period than patients who had low activation, after controlling for other aspects of disease. Several factors were associated with the level of patient activation: Longer disease duration and a history of previous IBD-related surgery were associated with high levels of activation, whereas high levels of anxiety and depression were associated with low levels of patient activation.

The association between anxiety and depression and reduced patient activation reinforces the need for routine screening for these conditions. So much of treating IBD is about taking care of the whole patient, and if we can control anxiety and depression, it can help with disease-related outcomes. I have found in my own clinical practice that patients with high levels of activation, who ask me questions and want to learn and engage in their care, have better clinical outcomes. I think this is because the activated patients better understand the need for laboratory monitoring, follow-up endoscopies, and the options available for medical care and use this knowledge to make informed decisions that motivate their long-term treatment adherence.

Highly activated patients often have the knowledge and skill to administer subcutaneous injections on their own according to the dosing schedule, which helps increase treatment adherence. This is particularly important since treatment effectiveness can be lost if patients take a “drug holiday” from their biologic and then antidrug antibodies develop. I have many patients who thought they could never administer their own injections, but now do so after understanding the rationale and learning how to do it. Many of my highly activated patients also use an app to monitor symptoms of diarrhea, abdominal pain, and bleeding. So if there are changes from baseline, patients can alert us, allowing us to act earlier during IBD exacerbations.

Increasing Patient Activation
Gastroenterologists in clinical practice can employ one or more aspects of patient activation right now. For example, use shared decision-making with patients when recommending drug therapy. With patient buy-in and education, gastroenterologists will be much more successful than just prescribing patients a drug without consideration for their needs and understanding.

Team care is also very important for patient activation. Nurses, nurse practitioners, physician assistants, and primary care physicians all have a role in supporting and treating the whole patient and can be incredibly helpful to gastroenterologists in caring for patients with IBD. In my practice, we have nurses trained to educate patients with IBD and teach them how to monitor their disease, track their systems, and come up with a communications plan. I think that if you empower nurses, nurse practitioners, physician assistants, and other personnel in your clinic to provide patient education and training, it will pay off in spades.

Your Thoughts?
How are you incorporating patient activation in your clinical practice? Join the conversation by sharing your experiences in the discussion section.

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