A Partnership to Enhance Research Related to the Management of Chronic Disease

描述(由申请者提供)：利用参与性研究过程，慢性病患者倡导公司、12名患者合作伙伴和慢性病管理中心将对1500名目前患有消化、神经或风湿病(不包括关节炎)的患者进行调查。调查的目的是确定以下方面的共同点：a)这些疾病患者在日常管理中面临的社会、行为、经济和临床挑战；b)患者对NIH类型研究(生物、行为、临床)的重要性和价值，以及他们如何相信这类研究可以帮助他们；以及c)针对他们的干预和交流可以得到加强的方式，使其更容易获得、信息更丰富和更有帮助。自律模式与患者伴侣的直接日常经验相结合，将指导研究工具的开发和调查的实施。虽然关于心脏病、癌症、呼吸系统疾病、关节炎和糖尿病患者的自我管理的信息很多，但对具有目标条件的患者的管理任务的探索很少。这项研究的结果有望为帮助这类患者的临床医生和志愿团体的努力提供参考，并导致制定自我管理干预措施来帮助他们。个人及其家人在管理慢性病方面面临着巨大的社会、行为、经济和临床挑战，对消化、神经和风湿(不包括关节炎)疾病的这些挑战的共性知之甚少。患者如何发现和评价与这些疾病相关的研究也没有得到很好的理解。这项参与性研究将确定常见的患者管理挑战，以及如何使1500名管理目标病情的患者更容易获得、提供信息和更有帮助的研究和干预措施。

DESCRIPTION (as provided by applicant): Using a participatory research process, Advocacy for Patients with Chronic Illness Inc, 12 Patient Partners, and the Center for Managing Chronic Disease will conduct a survey of 1500 patients currently managing digestive, neurological or rheumatological (excluding arthritis) conditions. The aim of the survey is to identify the commonalities in a) the social, behavioral, economic and clinical challenges in day to day management by patients across these conditions; b) the importance and value that patients place on NIH-type research (biological, behavioral, clinical) and how they believe such research can help them; and c) the ways in which interventions and communications directed to them could be enhanced to be more accessible, informative and helpful. A model of self regulation combined with the direct day to day experience of the patient partners will guide the development of research instruments and implementation of the survey. Although considerable information about self management by patients with heart, cancer, respiratory disease, arthritis and diabetes is available, very little exploration of management tasks by patients with the targeted conditions is available. Findings from the study are expected to inform the efforts of clinicians and voluntary groups assisting such patients and to lead to the development of self management intervention to assist them. Individuals and their families face significant social, behavioral, economic and clinical challenges in managing a chronic condition and little is known about the commonalities in these challenges across digestive, neurological, and rheumatological (excluding arthritis) diseases. How patients find out about and value research related to these diseases is also not well understood. This participatory research will identify the common patient management challenges and how research and interventions can be made more accessible, informative, and helpful to patients among 1500 people managing the target conditions.