King's College London, Institute of Psychiatry, Henry Wellcome Building, De Crespigny Park, London, SE5 8AF UK.
UCL, Institute of Neurology, 33 Queen Square, London, WC1N 3BG UK.
Alzheimers Res Ther. 2015 Apr 1;7(1):15. doi: 10.1186/s13195-015-0103-8. eCollection 2015.
Patients can provide consent to have their clinical records linked to a research register, a process known as consent for contact (C4C). There is evidence about how to engage people with mental illness in C4C, but nothing specific to older adults. This is a priority area for research (for example, dementia trials), although sign-up rates to C4C are lower than for younger populations. Through this study we seek to understand these disparities.
This was a two-stage cross-sectional observational study. In phase one, focus groups with service users, carers and clinicians informed a framework for clinicians to explain C4C to those on their caseload. In phase two, clinicians explained C4C to 26 service users (and carers where applicable). These conversations were recorded, and their content was analysed. Service users and carers were then interviewed to provide further feedback on their conversations with clinicians. A total of 31 service users, 24 carers and 13 clinical staff took part across the two phases.
In phase one, service users and carers sought assurance of the right to refuse participation in further studies (after joining C4C). Clinicians expressed concerns over legal and practical implications of ascertaining mental capacity and best interest. In phase two, clinicians' explanations were less thorough than similar explanations given to younger adults with psychosis. Clinicians omitted details of service users' right to stipulate contact arrangements, which was significantly associated with whether service users/carers agreed to join. Common reasons for joining C4C included altruism and the chance to speak to new people. Few participants refused to join, but reasons included avoidance of stress (potentially alleviated through the presence of a carer).
Implementing C4C in older adults' services requires clinicians to deliver concise, simple explanations to individuals and their carers where applicable. Older adults can be suspicious of unsolicited contact; thus, explanations must emphasise freedom to negotiate suitable contact arrangements. Hearing about research opportunities can be in the best interests of older adults, but communicating these opportunities requires a tailored approach.
患者可以同意将其临床记录与研究登记处关联，这一过程称为同意联系（C4C）。已经有关于如何让患有精神疾病的人参与 C4C 的证据，但针对老年人的具体证据很少。这是一个优先研究领域（例如，痴呆症试验），尽管 C4C 的注册率低于年轻人群。通过这项研究，我们试图了解这些差异。
这是一项两阶段的横断面观察性研究。在第一阶段，通过与服务使用者、照顾者和临床医生进行焦点小组讨论，为临床医生制定了向其患者解释 C4C 的框架。在第二阶段，临床医生向 26 名服务使用者（如有必要，还包括照顾者）解释了 C4C。这些对话被记录下来，并对其内容进行了分析。然后对服务使用者和照顾者进行了访谈，以提供他们与临床医生对话的进一步反馈。在两个阶段共有 31 名服务使用者、24 名照顾者和 13 名临床工作人员参与。
在第一阶段，服务使用者和照顾者要求保证有权拒绝参加进一步的研究（加入 C4C 后）。临床医生对确定心理能力和最佳利益的法律和实际影响表示担忧。在第二阶段，临床医生的解释不如向患有精神病的年轻成年人提供的类似解释详细。临床医生省略了服务使用者规定联系安排的权利的细节，这与服务使用者/照顾者是否同意加入有显著关联。加入 C4C 的常见原因包括利他主义和与新人交谈的机会。很少有参与者拒绝加入，但原因包括避免压力（通过照顾者的存在可能缓解）。
在老年服务中实施 C4C 需要临床医生向个人及其照顾者提供简洁、简单的解释（如适用）。老年人可能对未经请求的联系持怀疑态度；因此，解释必须强调自由协商合适的联系安排。听到研究机会可能符合老年人的最佳利益，但传达这些机会需要采取量身定制的方法。
