Patricia Pringle Bloom MD
Fellow
in Gastroenterology at MGH
PGY
6
Ascites
refers to fluid build-up in the abdomen, and is a common complication of liver
cirrhosis. Ascites accumulation leads to both patient discomfort and frequent
health care utilization. At MGH, 30% of cirrhotic patients admitted to the
hospital for a complication of cirrhosis are re-admitted within 90-days. Nearly
30% of those admissions and readmissions are for ascites management. Major
American and European expert groups recommend that ascites treatments be
adjusted based on body weight changes, as a surrogate of ascites volume.
However, in our current practice, outpatient weight data often does not reach
the hepatology provider.
Our
team performed an interview study of cirrhotic patients readmitted to the
hospital with a cirrhosis complication. We discovered that even in this ill and
sometimes under-served group, approximately 80% of patients had a Smartphone
and were interested in using an application to help manage their liver disease.
We also interviewed several MGH hepatology providers to better understand the
root causes of ascites readmissions and to learn about their desired features
for an outpatient ascites management program.
Two team members hard at work, bringing a scale to another patient! |
The
most significant obstacle thus far was obtaining IRB approval, specifically
with regards to the safety of patient data as it is transmitted through the
PGHD Connect application into EPIC. Even though the application is already
available for clinical use, the process to obtain regulatory approval was more
detailed and time-intensive than we anticipated.
Another
obstacle is the overall severity of medical illness in the patient population
we are treating. Rarely does a patient with cirrhosis have ascites alone – they
are also often burdened by other cirrhosis complications, co-morbidities, or
socioeconomic challenges. Working around those other issues has been a
challenge at times to ongoing patient participation.
At
present, we have enrolled 3 of our planned 20 patients for the pilot. One
patient and his provider have found the monitoring system particularly useful
when he lost a large amount of weight after hospital discharge. Our next steps
are to focus on patient recruitment and find an application developer to help
us design an application even more specific to our target population and
problem.
The
major lessons I have learned from engaging in this research have been two-fold:
1) When working in a large team, creating a plan for regular communication
about study tasks is imperative. Just as important, perhaps, is iteratively
changing that plan as needed and making sure the entire team is aware and on
board with changes. 2) Every human research study must tackle the important
task of maintaining the privacy of patient data. Using digital health tools
adds another layer to this task and must be managed thoughtfully and
proactively. When in doubt, ask someone who knows more!
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