The use of a Patient Support Program for patients with pancreatic exocrine insufficiency in Sweden to improve usage and adherence to treatment.
Authors: Svahn Joakim , Orera Peña María Luisa 
Published: March 2023

Introduction

Pancreatic enzyme replacement therapy (PERT) is the main treatment for pancreatic exocrine insufficiency (PEI). The objective is to deliver sufficient enzymatic activity into the duodenal lumen as simultaneously as possible with the meal in order to restore nutrient digestion and aid absorption. PERT is available in capsules or tablets for an oral intake. It is important that patients understand how their pancreatic enzymes work in order to dose properly and to help optimize compliance and timing of administration. Educational programs and tools as Patient Support Programs (PSP) that help the patient to manage PEI can improve PERT management and clinical outcomes

Aims

To present the benefit of a PSP to improve PERT usage and adherence in patients suffering from PEI in Sweden.

Materials and Methods

The PSP is available for any patient who has been prescribed PERT in Sweden. Patients enroll in the program by giving their consent to participate via a dedicated website. Participation is free of charge and does not affect other care provided to the patient by the healthcare system. All information gathered is confidential. Patients may withdraw from the program at any point and have all their personal information deleted.
Participation involves two surveys (at week 1 and 26), two phone consultations with a trained nurse, as well as 5 text messages and 4 emails, and has a total duration of 36 weeks.
The two surveys capture information regarding the underlying condition, specialty of the physician prescribing PERT, frequency and timing of PERT dosing relative to food intake, number of PERT capsules taken per day, whether the patient avoids high fat meals to avoid gastrointestinal symptoms, and stool frequency and consistency. The text messages remind the patient to take their prescribed treatment and contact the PSP staff if they have questions.
The emails sent out to participants contain reminders to take their medication as prescribed as well as links to useful information resources about PERT and PEI.
All advice given by the nurses in the PSP staff are based on generally accepted knowledge about PEI. Any information provided regarding the use of PERT is limited to what is contained in the approved summary of product characteristics.
The PSP is financially supported by BGP Products, a Viatris company, and has been open for enrollment since June 2016.

Results

374 patients have enrolled (as per March 20, 2022). Survey 1 has been sent out to all enrolled individuals. 190 surveys have been completed. Approximately 57% of respondents stated they are female. 19% have chronic pancreatitis, 15% have pancreatic cancer, 13% have undergone gastric surgery, and the remaining have other underlying conditions. 28% have been prescribed PERT by a surgeon, 24% by a GP, and 18% by a gastroenterologist. Survey 2 has been sent to 328 enrollees and has been completed by 116.
Comparing the responses from survey 1 and survey 2, there is a trend toward an improvement in bowel function (pain, discomfort, number of stools and stool consistency) over time; average score 5,9 (survey 1) vs 6,7 (survey 2) on a rating scale from 1 to 10.
Likewise, a slight increase in the mean number of times per day that PERT was taken can be observed; average number of times per day 3,7 (survey 1) vs 3,8 (survey 2).
Overall, 78% of the individuals who responded to survey 2 report that participation in the PSP has had a positive impact on the management of their PEI.

Conclusion

The use of a PSP program in a Swedish population suffering PEI is a valuable aid for patients to self-manage the prescribed treatment.