As you may know, pancreatic cancer does a number on your digestion.
Roughly 95 percent of pancreatic cancers start in the cells where your body produces its digestive enzymes. Attacking these specific cells results in a shortage of digestive enzymes—a condition called pancreatic exocrine insufficiency (PEI). In fact, more than 80 percent of patients with pancreatic cancer have PEI. Having PEI makes it harder for your body to digest food, absorb the nutrients it contains, or store excess sugar. As a result, you may find yourself losing lots of weight.
The loss of pancreatic enzymes can be treated by pancreatic enzyme replacement therapy (PERT)—medications or supplements that replace the enzymes to help restore your digestion.
According to Stefanie Condon-Oldreive, director of operations at Craig’s Cause Pancreatic Cancer Society in Halifax, Nova Scotia, PERT is now recognized as being just as important as chemotherapy. “PERT should be standard of care because it is common, easy, safe, and effective,” she says. “It should be initiated along with a diagnosis of pancreatic cancer.”
However, getting PERT is easier said than done, for a number of reasons.
A Closer Look at Patient Needs
Because Craig’s Cause focuses on improving both survival and quality of life in Canadians diagnosed with pancreatic cancer, Condon-Oldreive is particularly aware of the issues surrounding PEI and PERT. “PEI is a very common condition that negatively impacts quality of life but remains underrecognized and undertreated,” she says. “Only 20 percent of patients diagnosed with pancreatic cancer [who have PEI] are receiving pancreatic enzyme replacement therapy, and even fewer are receiving proper dosages.”
Even worse, only about half of the 20 percent of patients with PEI receiving PERT are prescribed accurate doses. The statistics are unfortunate, because patients who receive PERT not only live longer and enjoy a better quality of life but are able to endure treatment for a longer period of time.
To better understand PEI and PERT, a needs assessment was conducted by Condon-Oldreive and her colleagues. They surveyed patients with pancreatic cancer across Canada and learned the following:
- More than 70 percent of patients diagnosed with pancreatic cancer reported their healthcare provider did not discuss nutrition with them.
- Nearly two out of every three patients (66 percent) did not receive a referral to a nutritionist.
- 64.11 percent reported not receiving information on PERT.
- Nearly half (46.16 percent) stated they are not receiving PERT.
- Roughly four out of every five (81.62 percent) doubt they are receiving the correct PEI dosage.
Craig’s Cause then partnered with the Canadian Digestive Health Foundation and discovered that patients, their caregivers, and healthcare professionals alike all lacked understanding of the following key concepts about pancreatic cancer and PEI:
- How common PEI is in patients with pancreatic cancer
- The importance of PERT
- How to appropriately prescribe or take PERT with meals
- The ability to see PERT as a standard of care
Finding the Proper Dose
To address these issues, Craig’s Cause and the Canadian Digestive Health Foundation have launched two initiatives. The first is a national campaign to raise awareness of PEI and the role it plays in pancreatic cancer.
Second, the partners created an online medical tool designed to help healthcare professionals, patients, and caregivers offer and take the correct dosage of PERT to improve their digestion and overall nutritional care. The tool, called Digest This!, was designed by Native Marketing, a branding and marketing firm that works with the World Pancreatic Cancer Coalition (WPCC). It helps patients estimate the appropriate dosage of PERT they need for each meal. Known as “the PERT calculator,” the tool also educates users on the foods they eat. With information from the user, the tool can adjust PERT dosing for a number of factors, including the country you live in and the foods you eat.
The PERT calculator is free to use, but users must register with their name, email address, ethnic or racial background, and diagnosis. After signing up, users will receive an email with a link to download the PERT app. Craig’s Cause and the Canadian Digestive Health Foundation record the information to determine who uses the app and to contact users as needed.
The PERT calculator app requires users to input certain additional information to calculate the correct PERT dosage—such as your weight (either in kilograms or pounds) and the specific brand of enzyme replacement and dosing unit prescribed. The app also educates you on how to build your meals, based on serving sizes of foods such as protein, soup, vegetables, and bread.
To educate the pancreatic cancer community about Digest This!, Craig’s Cause partnered with the WPCC for an educational webinar, which can be viewed on YouTube. Condon-Oldreive encourages anyone interested in more information about PERT or the Digest This! app to contact either Craig’s Cause or any of the other pancreatic cancer advocacy groups around the globe through the WPCC. Many of them have grants that can help you gain access to certain drugs and the videos, handouts, and other resources on PERT.