Online patient self-assessment system for care and research of joint and skin dis

描述（由申请人提供）：使用结构化问卷来评估症状、疾病活动性和生活质量（QOL），并指导皮肤病（DD）和风湿病（RD）的治疗，改善预后。此外，社会心理和行为问题（例如，焦虑、抑郁和适应不良的疾病信念和应对）往往比疾病活动本身对生活质量和残疾的影响更大。然而，目前还没有实用的、综合的系统来评估生物医学、社会心理和行为（BPSB）问题，而且医生往往缺乏时间和资源来进行这种全面的护理。解决方案：我们的目标是扩展现有的在线患者（pt）自我评估系统，称为CarePrep，以支持RD和DD的综合BPSB护理。在第一阶段，我们专注于牛皮癣（Ps）和银屑病关节炎（PsA），这是具有挑战性的BPSB问题。CarePrep的一个基本版本现在在诊所运行，允许患者从任何网站通过互联网轻松输入BPSB数据。我们将扩大内容，全面评估与DD和RD相关的BPSB、生活质量和残疾问题。CarePrep软件是可维护的、可扩展的，并准备好支持这项工作。此外，我们的当务之急是加强皮肤科医生与风湿病专家的合作、医生与患者之间的沟通和以患者为中心的护理，并为患者和临床医生创造足够的价值，以保证在常规护理中使用，CarePrep将跟踪患者的表现、自然病史和治疗反应，并透明地支持研究。因此，CarePrep不仅仅是一个管理问卷的自动化系统。方法：项目开发、内容验证、临床初步检验信度、效度和可行性。目标1)适应和扩展针对Ps/PsA的CarePrep：与专家合作，我们将审查已建立的工具和现有的CarePrep内容；制定研发/研发评估计划；然后优先考虑第一阶段合适范围的核心Ps/PsA评估要素。我们将修改或安装内容，部署系统，并开始pt测试，收集反馈以指导改进。目标2)验证Ps/PsA的护理准备：我们将采访患者以评估他们在回应时的理解和思维过程；使用pt和专家评分评估CarePrep报告准确性的有效性；并进行结构化访谈，与CarePrep的数据进行比较。目的3)使用MD和pt自我报告评估可行性。影响取决于为DD和RD提供BPSB护理管理系统，该系统：1)跟踪疾病状态、生活质量和残疾——识别需要早期干预或修改治疗的患者；2)发现和评估需要治疗的BPSB问题；3)帮助个性化及时的医疗和社会心理干预，减少昂贵的、不适当的护理；4)通过在医疗环境中促进高效的BPSB护理，支持医生提供综合护理；5)透明地支持实践环境中的研究，例如检查综合BPSB护理对结果和成本的影响。提高成本效益;使所有利益相关者受益；促进研究将证明常规使用是合理的，并维持影响。

DESCRIPTION (provided by applicant): The use of structured questionnaires to assess symptoms, disease activity, and quality of life (QOL) and to guide treatment of dermatologic disease (DD) and rheumatologic disease (RD) improves outcomes. Further, psychosocial and behavioral issues (e.g., anxiety, depression, and maladaptive illness beliefs and coping) often have greater impact on QOL and disability than disease activity per se. However, there are no practical, integrated systems for assessing biomedical, psychosocial, and behavioral (BPSB) issues--and physicians often lack the time and resources for such total care. SOLUTION: Our goal is to extend an existing online patient (pt) self-assessment system, called CarePrep, to support integrated BPSB care for RD and DD. For Phase 1 we focus on psoriasis (Ps) and psoriatic arthritis (PsA), which present challenging BPSB issues. A basic version of CarePrep is now operational in clinic, allowing pts to easily enter BPSB data over the Internet from any site. We will expand content to assess the full spectrum of BPSB, QOL, and disability issues relevant to DD and RD. The CarePrep software is maintainable, scalable, and ready to support this work. Moreover, our imperative is to enhance dermatologist-rheumatologist collaboration, physician-pt communication, and pt-centered care, and to generate sufficient value to pts and clinicians to warrant use in routine care, where CarePrep will track the presentation, natural history, and treatment responsiveness and transparently support research. Thus CarePrep is much more than an automated system for administering questionnaires. APPROACH: Methods are straightforward: item development, content validation, and then preliminarily testing reliability, validity, and feasibility in clinic. Aim 1) Adapt and Extend CarePrep for Ps/PsA: Working with experts, we will review established instruments and existing CarePrep content; develop a plan for the RD/DD assessment; and then prioritize elements of a core Ps/PsA assessment of appropriate scope for Phase 1. We will revise or install content, deploy the system, and start pt testing, gathering feedback to guide refinement. Aim 2) Validate CarePrep for Ps/PsA: We will interview pts to assess their understanding and thought process in responding; assess validity using pt and expert ratings of CarePrep report accuracy; and do structured interviews to compare with CarePrep data. Aim 3) Assess feasibility using MD and pt self-reports. IMPACT rests upon delivering a BPSB care management system for DD and RD that: 1) tracks disease status, QOL, and disability--identifying pts in need of early intervention or treatment modifications; 2) uncovers and assesses BPSB issues that warrant treatment; 3) helps individualize timely medical and psychosocial interventions, reducing costly, inappropriate care; 4) supports physicians delivering integrated care by facilitating efficient BPSB care in medical settings and 5) transparently supports research in practice settings, such as examining the impact of integrated BPSB care on outcomes and costs. Improving cost-effectiveness; benefiting all stakeholders; and facilitating research will justify routine use and sustain impact. PUBLIC HEALTH RELEVANCE: Psychosocial and behavioral issues (e.g., anxiety, depression, or feeling helpless) amplify the impact of dermatologic and rheumatologic disease on patients' quality of life and disability. Our long-term goal is to integrate psychosocial and behavioral care with biomedical treatment from the outset to improve the targeting of care to a patient's individual needs. The societal value of the work is therefore to improve outcomes for patients while reducing unnecessary care and costs. We will accomplish this by adapting an existing online self-assessment system to gather directly from patients the full spectrum of data relevant to the care and investigation of dermatologic and rheumatologic disorders. Focusing initially on psoriasis and psoriatic arthritis, we will first develop disease-relevant components covering skin, joint, and other physical symptoms and psychological, social, behavioral, and quality of life issues. Then, we will test accuracy, feasibility, and ease of use of the assessment tool. Unfortunately, most physicians are unable to effectively deal with their patients' psychosocial and behavioral issues. Therefore, in Phase 2 of the proposed work we will develop our assessment tool to provide systems support for flexible, integrated interventions that efficiently deliver biopsychosocial and behavioral care, and then conduct a study to examine the impact on outcomes and costs.