What are the experiences of individuals suffering from chronic pancreatitis and acute recurrent pancreatitis as they seek care and support?
How does this condition change the way that they go about their daily lives?
If pancreatic patients could reimagine their ideal care experience, what would that look like?
These were some of the questions that we sought to answer as we spoke with patients and caregivers of those suffering from chronic pancreatitis and recurrent acute pancreatitis.
Over the course of 20 interviews, we listened to stories of excruciating pain, anxiety, and hopelessness as individuals and their families grappled with the medical system in search of a diagnosis or even just sufficient care. These conversations deepened our understanding of the immense impact of pancreatitis on the social, emotional, mental, and financial well-being of individuals and families – challenges that are rarely discussed while managing the physiological aspects of the condition. And we walked away from these conversations with a strong sense of urgency to do all that we could to ensure that patients battling pancreatitis could receive the holistic, compassionate, patient-centered care necessary to improve their well-being and lead resilient lives.
This report highlights the experience of patients and caregivers through their own words, identifies gaps in current approaches to care, and weaves together concrete ideas shared by patients, caregivers, and providers to improve patient outcomes and quality of life.
Inspired by these conversations, the team at Mission: Cure has identified concrete next steps to create a new patient-centered care model in which pancreatitis patients receive compassionate and holistic care that improves all aspects of their well-being and quality of life. We hope that the stories and themes noted in the report will inspire you and spark an actionable dialogue with providers, payers, and other stakeholders to drive measurable improvement in patient outcomes and experience.