Patient Priorities
The Report
Over the course of 35+ interviews, patients, caregivers, and providers shared ideas to improve the experience of pancreatitis patients. Below, we highlight strategies that shaped our care framework to improve the patient experience and outcomes that are concrete and mutually reinforcing. A combination of these strategies is already in place in certain medical centers, and we hope to spread and scale these practices so that all patients can access high-quality care.
The Strategies
Comprehensive Standards of Care that Prioritize Patient Outcomes
Patients and caregivers expressed a need for a standard protocol that can be used by medical providers when serving patients with symptoms related to chronic or recurrent acute pancreatitis. Several aspects of care were noted:
- A consistent set of tests and diagnostics to avoid misdiagnosis and/or delayed diagnosis;
- A tiered management plan that considers the unique symptoms presented by each patient and lays down a set of options to manage diet, pain, mental well-being, and surgical or endoscopic interventions, as needed;
- Tracking of patient outcomes to adjust and adapt the plan and proactively delay the progression of the disease; and
- A plan to recover from flare-ups, including self-management at home and ability to access testing and intravenous fluids at a local medical center, before heading to a hospital’s emergency room.
A comprehensive care protocol that prioritizes patient outcomes will empower both patients and their providers to be in control of managing pancreatitis.
Multi-disciplinary and Coordinated Care to Manage Pancreatitis and Related Conditions
Several patients, caregivers, and providers suggested a multi-disciplinary team of medical providers who understand the causes and presentation of pancreatitis and provide holistic care, including:
- Pancreas care: A team of local and remote gastroenterologists who specialize in pancreatic diseases to provide surgical, endoscopic, and other interventions.
- Pain management: Early access to pain management specialist(s) who work in close coordination with the patient to develop an integrated approach, including pharmacological and alternative therapies, to provide a personalized pain management plan.
- Mental well-being: Mental health experts to help patients manage the fear and anxiety of an impending flare-up, recognize and regulate emotions that may trigger a flare-up, learn skills to communicate with providers and advocate for their needs, “listen” and adhere to their treatment plan, and adapt their lifestyle to best manage pancreatitis.
- Wholesome diet: A dietician who can help manage the nutritional deficiencies that can result from pancreatitis such as malabsorption and pancreatic exocrine insufficiency, help identify food triggers, and work to create a personalized diet plan for patients, including suggestions on how to participate in social settings.
- Care coordination: A central advocate to help patients navigate through medical and non-medical issues, such as applying for disability and coordinating referrals and flow of information between different providers. Caregivers of young patients highlighted the need for a structured handoff from pediatric to adult providers to enable a smooth transition.
Provider Education that Integrates Patient Experience and New Research
Providers, patients and caregivers expressed a need to expand all aspects of medical training— residency, fellowships, and continuing medical education (CME)—to include insights from emerging research, evidence-based best practices, and patient experience to:
- Create a deeper understanding of the causes and presentation of pancreatitis to overcome misinformation and bias about alcohol;
- Assess, diagnose, and proactively manage pancreatitis;
- A care for patients with respect, empathy, and a commitment for their health.
A Pathway to Information, Connection, and Hope
To navigate the complex, technical, and sometimes incorrect information available online, patients and providers articulated a strong desire for a centralized clearinghouse for information about pancreatitis that is easy to understand. Patients suggested including information on causes of pancreatitis, therapies available to manage the condition, and promising approaches—such as clinical and drug repurposing trials—that are underway or soon to be launched that patients can track or participate in. These resources not only provide valuable information but are also a source of hope for patients and their caregivers as they live with pancreatitis.
