The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.

中文翻译：

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测量威胁生命的疾病的生活质量–瑞典患者和家庭护理人员的MQOL-E和QOLLTI-F的内容有效性和反应过程

麦吉尔生活质量调查问卷-扩展版（MQOL-E）和威胁生命的疾病-家庭护理人员/护理人员版本的生活质量（QOLLTI-F）被开发用于面临生命终期的患者及其家庭护理人员，分别。它们还被开发为可能用作配套乐器。当代的测量效度理论侧重于响应过程，即人们对项目进行响应时的感受和想法。当翻译测量仪器并使其适用于不同文化时，响应过程可能会受到影响。这项研究的目的是在瑞典具有生命危险的患者及其家庭护理人员中，完成MQOL-E和QOLLTI-F版本2（v2）的过程中，翻译和检查内容的有效性和响应过程。该研究分两个阶段进行（I）翻译和改编（II）使用15名患者和9名家庭护理人员的认知访谈来检查内容的有效性和反应过程。参与者是从瑞典县医院的血液透析科，心脏诊所，​​肺科诊所和姑息治疗机构招募的。患者患有危及生命的疾病，例如晚期心力衰竭，晚期慢性阻塞性肺疾病，晚期肾病或晚期癌症。患者是门诊病人，住院病人或正在接受家庭护理的病人。患者和家庭护理人员分别认为，MQOL-E和QOLLTI-F v2的各项反映了他们生活质量的相关和重要领域。尽管有些项目需要更多时间进行反思，但两种工具都被认为易于理解。进行了一些更改以解决翻译问题。与会者表示，在回答问题时反思自己的处境对他们而言是宝贵和有意义的，而回应是表达情感的机会。与MQOL-E和QOLLTI-F v2的瑞典语翻译有关的响应过程的结果可提供有关翻译工具的内容有效性，语言对等性和文化适用性的证据。此外，结果表明，这些仪器可以支持患者和/或家庭护理人员与医疗保健专业人员之间就对生活质量至关重要的问题进行的对话。需要进一步的研究来研究瑞典语翻译的心理计量特性。与会者表示，在回答问题时反思自己的处境对他们而言是宝贵和有意义的，而回应是表达情感的机会。与MQOL-E和QOLLTI-F v2的瑞典语翻译有关的响应过程的结果可提供有关翻译工具的内容有效性，语言对等性和文化适用性的证据。此外，结果表明，这些仪器可以支持患者和/或家庭护理人员与医疗保健专业人员之间就对生活质量至关重要的问题进行的对话。需要进一步的研究来研究瑞典语翻译的心理计量特性。与会者表示，在回答问题时反思自己的处境对他们而言是宝贵和有意义的，而回应是表达情感的机会。与MQOL-E和QOLLTI-F v2的瑞典语翻译有关的响应过程的结果可提供有关翻译工具的内容有效性，语言等效性和文化适用性的证据。此外，结果表明，这些仪器可以支持患者和/或家庭护理人员与医疗保健专业人员之间就对生活质量至关重要的问题进行的对话。需要进一步的研究来研究瑞典语翻译的心理计量特性。与MQOL-E和QOLLTI-F v2的瑞典语翻译有关的响应过程的结果可提供有关翻译工具的内容有效性，语言等效性和文化适用性的证据。此外，结果表明，这些仪器可以支持患者和/或家庭护理人员与医疗保健专业人员之间就对生活质量至关重要的问题进行的对话。需要进一步的研究来研究瑞典语翻译的心理计量特性。与MQOL-E和QOLLTI-F v2的瑞典语翻译有关的响应过程的结果可提供有关翻译工具的内容有效性，语言等效性和文化适用性的证据。此外，结果表明，这些仪器可以支持患者和/或家庭护理人员与医疗保健专业人员之间就对生活质量至关重要的问题进行的对话。需要进一步的研究来研究瑞典语翻译的心理计量特性。