Endocrine Abstracts

Background: Pancreatic Enzyme Insufficiency (PEI) is a recognised potential consequence of pancreatic pathology and / or somatostatin analog therapy. It is known to be detrimental to patient quality of life and nutritional status (1). Patients with PEI can experience gastrointestinal symptoms, vitamin and micronutrient deficiencies, malnutrition, and even reduced survival (2). Pancreatic enzyme replacement therapy (PERT) is the expert guideline recommended treatment for PEI, associated with both improved survival and quality of life (QoL).(1,2) However, over the last 12 months, there has been a significant supply issue to the UK, predicted to continue until 2026. A Patient Safety Alert was released in May 2024 (3). Neuroendocrine Cancer UK, undertook a patient survey to understand the impact shortages have had on the patient community.

Methods: An online survey was developed, comprising of questions about usual PERT supply and others to identify any changes since shortages were first reported. Results were collated, alongside a thematic analysis of free text answers on the impact on well-being.

Findings: A total of 148 responses were received - with all respondents answering all questions. 68% reported difficulties with PERT supply on 1 or more occasions: 75% were told this was due to no stock. Of the 61% offered an alternative, 50% had difficulty obtaining this: 38% have run out completely at least once. More than 65% have tried to manage supply by reducing dose: 42% have gone without eating. 66% report an adverse impact on well-being: common themes included increased anxiety, symptom exacerbation, isolation, impact on work and finances, intolerance of treatment, weight loss and fear: I am finding this frightening, and depressing, I am a very positive person, and feel I’ve handled my life with NET quite well, always being careful not to be too far from a loo, but now yes, I am fearful. Respondents also reported low awareness amongst GPs, clinicians and pharmacists about PSA recommendations (3,4) - leaving them unsupported in obtaining supply: I am exhausted and stressed at this unsustainable situation of trying to obtain PERT and feel unable to continue doing this. My quality of life has significantly reduced.