Bioethics Unit, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.
Fondazione FARO, Turin, Italy.
PLoS One. 2023 Mar 23;18(3):e0282960. doi: 10.1371/journal.pone.0282960. eCollection 2023.
Advance care planning (ACP) is influenced by several factors (e.g., patient's readiness to engage, clinician's skills, and the cultural environment). Availability of reliable and valid self-reported measures of the ACP domains is crucial, including cross-cultural equivalence.
To culturally adapt into Italian the 19-item Quality of Communication (QOC) and the 4-item ACP Engagement (4-item ACP-E) questionnaires.
We translated and culturally adapted the two questionnaires and produced a significant other (SO) version of the QOC (QOC-SO). Each questionnaire was field tested via cognitive interviews with users: nine patients (QOC, 4-item ACP-E) and three SOs (QOC-SO) enrolled at three palliative care services.
We made minor changes to 5/19 QOC items, to improve clarity and internal consistency; we changed the response option 'didn't do' into 'not applicable'. Finally, we slightly revised the QOC to adapt it to the paper/electronic format. QOC debriefing revealed that the section on end of life was emotionally challenging for both patients and SOs. We simplified the 4-item ACP-E layout, added a sentence in the introduction, and revised the wording of one item, to improve coherence with the Italian ACP legislation. ACP-E debriefing did not reveal any major issue.
Results were satisfactory in terms of semantic, conceptual and normative equivalence of both questionnaires. Acceptability was satisfactory for the 4-item ACP-E, while findings of the QOC cognitive debriefing informed a major amendment of a pilot trial protocol on ACP in multiple sclerosis (ConCure-SM): use of the interviewer version only, in an adaptive form. Psychometric testing of both questionnaires on a large, independent sample will follow.
预先医疗照护计划(ACP)受到多种因素的影响(例如,患者参与的准备程度、临床医生的技能以及文化环境)。获得可靠和有效的 ACP 领域自我报告测量工具至关重要,包括跨文化等效性。
将 19 项沟通质量(QOC)和 4 项 ACP 参与度(4-item ACP-E)问卷翻译成意大利语,并进行文化调适。
我们翻译并对这两个问卷进行了文化调适,制作了 QOC 的重要他人版本(QOC-SO)。每个问卷都通过用户的认知访谈进行了现场测试:在三个姑息治疗服务中心招募了九名患者(QOC、4-item ACP-E)和三名重要他人(QOC-SO)。
我们对 QOC 的 5/19 项进行了小的改动,以提高清晰度和内部一致性;我们将“未进行”的回答选项改为“不适用”。最后,我们对 QOC 进行了轻微的修订,以使其适应纸质/电子格式。QOC 的反馈表明,患者和重要他人都对生命末期这一部分感到情绪上的挑战。我们简化了 4-item ACP-E 的布局,在介绍中添加了一句话,并修改了一个项目的措辞,以提高与意大利 ACP 法规的一致性。ACP-E 的反馈没有发现任何重大问题。
就两个问卷的语义、概念和规范等效性而言,结果是令人满意的。4-item ACP-E 的可接受性是令人满意的,而 QOC 的认知反馈为多发性硬化症中的 ACP 试点试验方案(ConCure-SM)的重大修订提供了信息:仅使用采访者版本,以适应性的形式。将对两个问卷进行大量独立样本的心理测试。