The pain associated with chronic pancreatitis is challenging to treat and to investigate. Chronic pancreatic pain (CPP) reflects multiple potential mechanisms: visceral factors (e.g., obstruction, inflammation), neuropathic pain due to central sensitization, and psychosocial and behavioral factors (e.g., depression, anxiety disorders, trauma or abuse, poorly tolerated stress, and poor social support). Smoking and alcohol misuse contribute both to the pain and the chronic pancreatitis. Despite a recognized need, no practical, integrated assessment tools are available to gather and track a comprehensive assessment for either patient care or research. Therefore, physicians and investigators are often looking at CPP through a pinhole. SOLUTION: Our objective is to develop an assessment for the biomedical, psychosocial, behavioral, and quality-of-life (biopsychosocial, BPS) dimensions of CPP for an existing online, branching, patient self- assessment system called CarePrep, thereby identifying patients at risk for refractory pain and disability, measuring pain's impact, illuminating mechanisms, guiding management, and tracking status and response to treatment. Moreover, our goals are to meet the needs of patients and clinicians for enhancing communication and patient-centered care, and to generate sufficient value to warrant installation in the pathway of routine care;thereby transparently capturing data for research. A preliminary, generic Online, CarePrep Assessment (OCA) is operating in clinic;it allows patients to easily enter and track BPS data over the Internet from home or clinic. The OCA is maintainable, scalable, and ready to support the proposed work. APPROACH:
Aim 1) Working with experts, we will review the literature, established instruments, and current OCA content;develop a plan for a comprehensive pain assessment;and then prioritize and designate elements of a core CPP assessment of reasonable scope for Phase 1. We will deploy the system at our sites and start patient testing, gathering feedback to guide refinement. Patients will be asked to do CarePrep before clinic, and the report will be delivered to physicians before the clinic encounter.
Aim 2) Focusing on core CPP content, we will assess content validity using cognitive interviews;assess construct validity using patient ratings of OCA report accuracy;and comparing OCA data to structured interviews by two evaluators, examining inter-rater reliability.
Aim 3) We will use physician and patient self-reports to assess feasibility and utility. IMPACT stems from 1) creating a pandimensional, streamlined, expandable assessment that minimizes redundancy and maximizes relevance, thereby facilitating collection of the full spectrum of data useful for both patient care and research;2) creating a BPS pain assessment resource that generates sufficient value to relevant stakeholders to warrant routine use, thereby fostering BPS care;3) using a consensus process to create this assessment resource, thereby maximizing value for patient care and research, and 4) using the OCA installed in the pathway of routine care to transparently capture data thereby facilitating the conduct of research in practice settings.
This work develops an online, patient self-assessment system to support the care and clinical investigation of chronic pancreatic disease and chronic pancreatic pain in particular. A preliminary version of our online system now operating in clinic gathers a generic, comprehensive assessment. The proposed work will develop components covering medical, psychological, social, behavioral, and quality-of-life issues relevant to chronic pancreatic pain. The system will also gather clues to identify neuropathic pain, which occurs when the nervous system fails to properly regulate pain signals. Any of these factors could contribute to chronic pain, and, therefore, it is important to obtain a comprehensive assessment on all pain patients. These factors can help unravel the causes of the pain and point the way to more effective treatment. Although we focus on chronic pancreatic pain, we are using a general approach that will be applicable to any chronic pain or non-pain symptom.