What We’re Learning: PaTH Cohorts Prepare to Analyze Data

Researchers will soon analyze data from surveys sent to patient participants in each PaTH cohort. Currently, PaTH focuses on three main cohorts: Idiopathic Pulmonary Fibrosis (IPF), Atrial Fibrillation (AF), and Healthy Lifestyles and Weight (HLW). Like all PCORnet Clinical Research Networks, the PaTH cohorts represent a rare disease (IPF), a common disease (AF), and body weight (HLW).

Each cohort covers an important health topic that can benefit from further research. For instance, IPF is a rare and often severe lung disease with no known cure. AF is the most common rhythm abnormality affecting the heart and increases patients’ risk of having a stroke. Over a third of adults in the United States struggle with obesity, which can lead to heart disease, type 2 diabetes, and certain types of cancer; many others are not obese, but their sedentary lifestyles can contribute to a wide range of health problems.

Each cohort’s survey assessed different outcomes, says Project Manager Brandon Mahler. For instance, the AF follow-up surveys included questions about participants’ general health and their adherence to blood-thinning medications, while patients in the IPF cohort answered questions about their quality of life and medication preferences. HLW participants, on the other hand, were asked about nutrition, physical activity, and weight management practices. The research teams engaged patients and clinicians to determine the right questions for each cohort.

Although surveys such as these are invaluable to research, they can be tedious to complete, so it can be challenging to help participants stay involved with a survey that repeats over time. The AF cohort sent out 1,025 six-month follow-up surveys and received back 755 for a 74% overall completion rate. Likewise, the HLW cohort sent out 1,194 six-month surveys and received back 794 (66%) with site-specific response rates of 52% to 80%.

The IPF response rates were lower, which likely reflects the severity of illness of participants in this study group. At three months, researchers sent out 141 surveys and received 87 completed ones (62%). The six-month response rate was 51%, and the nine-month response rate was 54%. Research teams understand how difficult it can be for patients in this cohort to respond to surveys and are very grateful to those who did.

PaTH researchers will use these survey data to understand patients’ experiences with health and the health care system. Some of the paper topics that are being developed include:

  • Predictors of major bleeding and stroke among AF patients who are prescribed different blood thinning medications
  • The association of oxygen use and with survival, quality of life, exercise tolerance, neurocognitive function, and dyspnea (shortness of breath) in IPF patients
  • Using patient-reported outcomes to understand how to improve primary care for patients who are overweight

PaTH is thankful to the many patients who took the time to complete these surveys to date and looks forward to the discussions between patient partners, clinicians, and researchers as plans for examining the data continue and analyses get underway this summer.

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