Department of Psychiatry, University of Iowa Carver College of Medicine, Iowa City, 52242-1000, USA.
Clin Trials. 2012 Dec;9(6):798-805. doi: 10.1177/1740774512458986. Epub 2012 Oct 1.
The Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications (DCCT/EDIC) Study has sustained an extraordinarily high level of participant involvement for over two decades.
In order to identify specific characteristics of EDIC that contributed most strongly to retention, study-designed questionnaires were distributed to 1334 participants.
Confidential questionnaires were completed during EDIC Years 15-17. Participants were classified as Completely Adherent (completed all visits), Partly Adherent (missed >1 visit or major portion of a visit), or Inactive (did not participate for >5 years). Questionnaire items addressed specific aspects of clinic visits, evaluation procedures, staff-participant relationships, and medical/health-care support provided by EDIC.
The most commonly cited reasons for continuing participation were Cutting Edge Tests to assess diabetes complications (79.3%), Annual Evaluations (67.7%), a desire to Help Others (65.2%), and Better Care for Diabetes (61.6%). Women chose Cutting Edge Tests as their first or second most important reason significantly more often than men, whereas men chose Better Care for Diabetes more frequently. Individuals with at least three diabetes-related complications were more likely than those with fewer complications to choose Annual Evaluations as their first or second reason for continued involvement.
The small proportion of individuals who discontinued participation restricted our ability to identify factors associated with suspended involvement. In addition, our analysis is limited to a cohort with type 1 diabetes followed in an observational study after an average participation time of 6.5 years in a randomized trial.
The primary reasons identified by respondents for their long-term commitment are consistent with shorter-term studies and underscore the importance of expert medical care, supportive staff-participant relationships, and involvement with clinically and scientifically meaningful research.
糖尿病控制和并发症试验/糖尿病干预和并发症的流行病学（DCCT/EDIC）研究在超过二十年的时间里一直保持着极高的参与者参与度。
为了确定对保留率贡献最大的 EDIC 的具体特征，研究设计了问卷并分发给 1334 名参与者。
在 EDIC 第 15-17 年期间完成了机密问卷。参与者被分为完全依从者（完成了所有的就诊）、部分依从者（错过>1 次就诊或就诊的大部分时间）或不活跃者（>5 年未参与）。问卷项目涉及诊所就诊、评估程序、工作人员-参与者关系以及 EDIC 提供的医疗/保健支持的具体方面。
继续参与的最常见原因是进行前沿测试以评估糖尿病并发症（79.3%）、年度评估（67.7%）、帮助他人的愿望（65.2%）和更好的糖尿病护理（61.6%）。女性选择前沿测试作为他们的第一或第二重要原因的频率明显高于男性，而男性更频繁地选择更好的糖尿病护理。至少有三种糖尿病相关并发症的个体比并发症较少的个体更有可能选择年度评估作为他们继续参与的第一或第二原因。
停止参与的人数比例较小，限制了我们识别与暂停参与相关因素的能力。此外，我们的分析仅限于在一项观察性研究中，在一项随机试验中平均参与时间为 6.5 年后，对 1 型糖尿病患者进行随访的队列。
受访者长期承诺的主要原因与短期研究一致，并强调了专家医疗保健、支持性工作人员-参与者关系以及参与具有临床和科学意义的研究的重要性。
