Online patient self-assessment for chronic pancreatic and other pain

描述（由申请人提供）：慢性胰腺炎相关疼痛的治疗和研究具有挑战性。慢性胰腺疼痛（CPP）反映了多种潜在机制：内脏因素（如梗阻、炎症）、中枢致敏引起的神经性疼痛，以及社会心理和行为因素（如抑郁、焦虑障碍、创伤或虐待、难以耐受的压力和缺乏社会支持）。吸烟和酒精滥用会导致疼痛和慢性胰腺炎。尽管有公认的需求，但没有实用的综合评估工具可用于收集和跟踪患者护理或研究的综合评估。因此，医生和研究人员经常通过针孔来观察CPP。解决方案：我们的目标是为现有的在线、分支、患者自我评估系统CarePrep开发CPP的生物医学、社会心理、行为和生活质量（生物心理社会，BPS）维度的评估，从而识别有难治性疼痛和残疾风险的患者，测量疼痛的影响，阐明机制，指导管理，并跟踪治疗状态和反应。此外，我们的目标是满足患者和临床医生对加强沟通和以患者为中心的护理的需求，并产生足够的价值，以确保在常规护理途径中安装；从而透明地获取研究数据。初步的、通用的在线护理准备评估（OCA）正在诊所进行；它允许患者在家中或诊所通过互联网轻松输入和跟踪BPS数据。OCA是可维护的、可扩展的，并且准备好支持提议的工作。方法：目标1)与专家合作，我们将审查文献、已建立的工具和当前的OCA内容；制定一个全面的疼痛评估计划；然后优先考虑并指定第一阶段合理范围的核心CPP评估的要素。我们将在我们的站点部署该系统，并开始患者测试，收集反馈以指导改进。患者将被要求在就诊前做CarePrep，并在就诊前将报告交给医生。目标2)关注核心CPP内容，我们将使用认知访谈来评估内容效度；使用患者对OCA报告准确性的评分来评估结构效度；并将OCA数据与两位评估者的结构化访谈进行比较，检查评估者之间的可靠性。目的3)我们将使用医生和患者的自我报告来评估可行性和实用性。IMPACT源于1)创建一个泛维度的、精简的、可扩展的评估，最大限度地减少冗余，最大限度地提高相关性，从而促进收集对患者护理和研究有用的全方位数据；2)创建一个BPS疼痛评估资源，对相关利益相关者产生足够的价值，以保证日常使用，从而促进BPS护理；3)使用共识流程创建该评估资源，从而最大化患者护理和研究的价值；4)使用安装在常规护理路径中的OCA透明地捕获数据，从而促进实践环境中的研究进行。

DESCRIPTION (provided by applicant): 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. PUBLIC HEALTH RELEVANCE: 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.