Most of us went into medicine principally to serve patients. We took the Hippocratic Oath and pledged primum non nocere. We learned how to take careful patient histories and became experts in the art and science of improving patient outcomes. We practiced how to communicate with empathy, facilitated shared decision-making, and supported our patients through the highs and lows of their illness experience. In short, we became gastroenterologists and hepatologists to improve the lives of our patients.
As co-editors of the American Journal of Gastroenterology, we recognize that medical journals like ours sometime publish research that is tangential to the patient experience. The biomedical literature is full of studies that report physiologic or surrogate outcomes of unclear direct relevance to patient care. Those types of studies are important as they contribute immensely to our understanding of pathophysiology and the basis of disease. However, their impact on daily medical care often seems distant. In this issue of AJG, called “Putting Patients First,” we collected studies that directly measure patient reported outcomes (PROs) and emphasize the patient’s experience of their disease.
Earlier this year, we distributed a request for manuscripts that put patients first. We emphasized that clinical gastroenterologists and hepatologists are unified by a singular mission: to deliver exceptional care to their patients. The call for papers stated that “although there are many stakeholders in healthcare, ranging from administrators to billers to providers, the ultimate goal of clinical care is to help patients.”
With this background, we called for high-quality studies that use a PRO as the primary metric of treatment success. PROs include everything from symptom reports to quality-of-life measurements to satisfaction with care—all reported directly by patients. We wanted to know what improves the patient experience, how to reduce the burden of symptoms, or how to improve health-related quality-of-life. Then we collected the very best studies and combined them into this special issue highlighting the most practical and noteworthy efforts to put patients first.
We were thrilled with the response and hope you will find this issue to be a satisfying and inspiring collection. After reading these pages, you will learn how a patient who nearly lost his life after a small bowel transplant invented a “smart” ostomy bag with a sensor that automatically measures fluid collections, reports the data to a smartphone app, and warns patients when their bag is about to overflow. You will learn how a monitoring program improved symptoms and facilitated weight loss in obese patients with acid reflux disease, discover the link between psychosocial distress and quality-of-life impairments in proton pump inhibitor non-responders, and consider the effect of a novel treatment for pruritis, an oftentimes maddening symptom of primary biliary cholangitis. Other studies demonstrate how to optimize selection of biologics in inflammatory bowel disease (IBD) using a patient decision aid and how to measure IBD outcomes with the Patient-Reported Outcome Measurement Information System (PROMIS). We included studies evaluating the impact of functional gastrointestinal disorders on somatization, quality-of-life, and healthcare utilization; a trial of baclofen for symptoms of rumination syndrome; and a trial of low-dose linaclotide on patient symptoms of chronic idiopathic constipation, among many other studies. All of these studies have in common a focus on the patient experience and a recognition that clinical success is measured by patients, first and foremost.
We hope you enjoy reading this collection of world-class studies that put patients first.