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

描述（由申请人提供）：使用结构化问卷评估症状、疾病活动和生活质量（QOL），并指导皮肤病（DD）和风湿病（RD）的治疗，改善结局。此外，心理社会和行为问题（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有更大的影响。然而，目前还没有实用的综合系统来评估生物医学、心理社会和行为（BPSB）问题，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的集成BPSB护理。对于第1阶段，我们专注于银屑病（Ps）和银屑病关节炎（PsA），这提出了具有挑战性的BPSB问题。CarePrep的基本版本现已在诊所运行，允许患者通过互联网从任何网站轻松输入BPSB数据。我们将扩展内容，以评估与DD和RD相关的BPSB、QOL和残疾问题的全方位。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-风湿科医生的合作，医生-患者沟通和以患者为中心的护理，并为患者和临床医生产生足够的价值，以保证在常规护理中使用，CarePrep将跟踪表现，自然史和治疗反应，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：方法很简单：项目开发、内容验证，并初步检验信度、效度和临床可行性。目标1）调整和扩展适用于Ps/PsA的CarePrep：我们将与专家合作，审查已建立的工具和现有的CarePrep内容;制定RD/DD评估计划;然后优先考虑第1阶段适当范围的核心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）为Ps/PsA评估CarePrep：我们将对患者进行访谈，以评估他们在回应时的理解和思维过程;使用患者和CarePrep报告准确性的专家评级评估有效性;并进行结构化访谈，以与CarePrep数据进行比较。目的3）使用MD和PT自我报告评估可行性。IMPACT依赖于为DD和RD提供BPSB护理管理系统：1）跟踪疾病状态，QOL和残疾-确定需要早期干预或治疗调整的患者; 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心理干预，减少昂贵的，不适当的护理; 4）通过促进医疗环境中有效的BPSB护理来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;使所有利益攸关方受益;促进研究将证明常规使用和维持影响是合理的。 公共卫生相关性：社会心理和行为问题（例如，焦虑、抑郁或无助感）放大了皮肤病和风湿病对患者生活质量和残疾的影响。我们的长期目标是从一开始就将心理社会和行为护理与生物医学治疗相结合，以提高护理的针对性，满足患者的个人需求。因此，这项工作的社会价值是改善患者的治疗结果，同时减少不必要的护理和成本。我们将通过调整现有的在线自我评估系统来实现这一目标，以直接从患者那里收集与皮肤病和风湿病疾病的护理和调查相关的全方位数据。首先关注银屑病和银屑病关节炎，我们将首先开发疾病相关的组件，包括皮肤，关节和其他身体症状以及心理，社会，行为和生活质量问题。然后，我们将测试评估工具的准确性、可行性和易用性。不幸的是，大多数医生无法有效地处理患者的心理和行为问题。因此，在拟议工作的第二阶段，我们将开发我们的评估工具，为灵活的综合干预措施提供系统支持，有效地提供生物心理社会和行为护理，然后进行研究，以检查对结果和成本的影响。

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.