This cross-sectional mixed media survey study captured a range of participants with pancreatic cancer across New Zealand and Australia. Our study engaged with people diagnosed with pancreatic cancer directly and asked them to report on their experience of PERT. Patient-reported outcome studies encourage patients to identify their symptoms, help determine the efficacy of medications and can prompt action.[19] Our study highlighted the lack of awareness of PERT in New Zealand and Australian participants with pancreatic cancer, with 30–40% of those respectively reporting they had not heard of PERT. There were highly variably prescribing patterns that are inconsistent with international guidelines, despite PERT being found to be highly effective in improving malabsorption symptoms. Compliance with PERT was found to be high amongst the participants once started on the medication.
Evidence from across the world has shown that PERT is under-utilised as the intervention for PEI in pancreatic cancer patients.[15, 20, 21] A recent national prospective study in the UK reported significant variation in the prescription of PERT between those with resectable disease and metastatic diagnoses.[21] In this study a smaller proportion of patients were on PERT if they had unresectable disease, treatment at a regional centre, were older, and had multiple co-morbidities. A US study, which used a patient registry disseminated through a patient advocacy group to investigate lived experience with PERT and pancreatic cancer reported 85% of participants had spoken to a health professional about PERT, with 89% of them prescribed PERT.[22] The majority of prescribers were medical oncologists, in contrast to our study which demonstrated surgeons as the most common prescriber.
The same US study found high rates of awareness of enzyme replacement (73%) in people with pancreatic cancer, but with only 46% taking the medication.[22] Carnie et al. assessed the feasibility of an algorithm to guide prescribing of PERT and showed that almost 88% of participants were already on PERT, although almost 50% were taking it incorrectly.[16] They also reported that compliance with the treatment was only moderate. Our results in this study showed the majority of people on PERT took the medication as prescribed. Current guidelines state that the best-practice dosing regime is to have a starting dose of two capsules with every meal and one with every snack, with up titration for large or high fat meals and snacks.[23] Only 18% and 27% of the participants in New Zealand and Australia were reported to have received this instruction in our study, with a wide variety of advice given to patients in both countries around dosing regimen. Patients, therefore, followed advice and prescription instructions that were not best practice.
Evidence from previous studies suggests that PERT plays a major role in symptom management, and potentially survival, for people with pancreatic cancer.[10, 16, 22] The US study reported symptoms in 88% of participants with pancreatic cancer, with self-reported resolution of these symptoms in almost half the recruits.[22] Our study outcomes are consistent with current literature, supporting the use of PERT to improve symptoms such as abdominal pain, bloating and diarrhoea which are known to significantly impact on the quality of life of people with pancreatic cancer.[8] Few adverse effects from the use of PERT in pancreatic cancer have been reported, suggesting the medication is safe and well-tolerated.[9] Our study found similarly low rates of side-effects from enzyme replacement that could be attributable to the medication.
Implications for clinical practice
There are a significant number of patients in New Zealand and Australia with pancreatic cancer who are likely to have malabsorption secondary to PEI, who are not receiving PERT as a standard of care. Our study has demonstrated that those patients are often prescribed an incorrect dose and/or timing regime. Patients experienced few adverse effects related to the enzyme replacement. We therefore recommend that clinicians should be discussing PERT with all patients diagnosed with pancreatic cancer, which is consistent with international guidelines.
Strengths and limitations
This survey study has some limitations. As it was completed by patients without any assistance from a clinician, the diagnosis was self-reported. The survey was advertised through mixed media and would only target those with access to platforms such as Instagram, Facebook, and Twitter. This methodology may not have engaged participants from culturally and linguistically diverse populations, homeless or people from lower socio-economic backgrounds. The main strength of this study was effective promotion of the study to potential participants and improved recruitment efforts, especially in rural areas. Our research team also had strong connections with multiple consumer advocacy groups for people with pancreatic cancer.