Online patient self-assessment for chronic pancreatic and other pain

描述(申请人提供)：与慢性胰腺炎相关的疼痛是具有挑战性的治疗和调查。慢性胰腺痛(CPP)反映了多种可能的机制：内脏因素(如梗阻、炎症)、中枢敏化引起的神经病理性疼痛以及心理社会和行为因素(如抑郁、焦虑症、创伤或虐待、耐受性差的压力和不良的社会支持)。吸烟和酗酒都会导致疼痛和慢性胰腺炎。尽管有公认的需求，但目前还没有实用的综合评估工具来收集和跟踪对患者护理或研究的全面评估。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、心理社会、行为和生活质量(BiosyschosoSocial，BPS)维度的评估，从而识别有顽固性疼痛和残疾的患者风险，衡量疼痛的影响、照明机制、指导管理以及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，以保证安装在常规护理的路径上；从而透明地捕获数据用于研究。初步的、通用的在线CarePrep评估(OCA)正在临床上运行；它允许患者从家里或诊所通过互联网轻松输入和跟踪BPS数据。OCA是可维护的、可伸缩的，并且随时可以支持提议的工作。方法：目标1)与专家合作，我们将回顾文献、已建立的工具和当前的OCA内容；制定全面疼痛评估的计划；然后确定第一阶段合理范围的核心CPP评估的优先顺序和指定元素。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。患者将被要求在临床前做CarePrep，报告将在临床遇到之前提交给医生。目的2)针对CPP的核心内容，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其结构效度；将OCA数据与由两位评估者进行的结构化访谈进行比较，以检验评分者之间的信度。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。影响来自1)创建一个全方位、精简、可扩展的评估，以最大限度地减少冗余并最大化相关性，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BPS疼痛评估资源，其为相关利益攸关方生成足够的价值以保证常规使用，从而促进BPS护理；3)通过协商一致的程序创建这种评估资源，从而使患者护理和研究的价值最大化；4)使用安装在常规护理路径中的OCA透明地捕获数据，从而促进在实践环境中进行研究。 公共卫生相关性：这项工作开发了一个在线的患者自我评估系统，以支持慢性胰腺疾病的护理和临床调查，特别是慢性胰腺疼痛。我们目前在临床上运行的在线系统的一个初步版本收集了一个通用的、全面的评估。这项拟议的工作将开发涵盖与慢性胰腺疼痛相关的医疗、心理、社会、行为和生活质量问题的组成部分。该系统还将收集线索来识别神经病理性疼痛，当神经系统未能适当调节疼痛信号时就会发生这种疼痛。这些因素中的任何一个都可能导致慢性疼痛，因此，对所有疼痛患者进行全面评估是很重要的。这些因素可以帮助解开疼痛的原因，并为更有效的治疗指明方向。虽然我们专注于慢性胰腺疼痛，但我们使用的一般方法将适用于任何慢性疼痛或非疼痛症状。

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.