Department of Nursing Science, Sophiahemmet University, Box 5605, 114 86, Stockholm, Sweden.
Department of Health Care Sciences/ Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
BMC Palliat Care. 2020 Mar 25;19(1):40. doi: 10.1186/s12904-020-00549-6.
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.
麦吉尔生活质量问卷-扩展版（MQOL-E）和危及生命疾病-家庭照顾者/照顾者版生活质量问卷（QOLLTI-F）是分别为面临生命末期的患者及其家庭照顾者开发的。它们也被开发为可能的辅助工具。当代测量有效性理论强调反应过程，即人们在回答项目时的感受和想法。当测量工具被翻译成并适应于不同文化时，反应过程可能会受到影响。本研究的目的是翻译并检验瑞典有生命威胁的疾病患者及其家庭照顾者在完成 MQOL-E 和 QOLLTI-F 第 2 版（v2）时的内容有效性和反应过程。
该研究分两个阶段进行（I）翻译和改编，（II）通过对 15 名患者和 9 名家庭照顾者进行认知访谈来检验内容有效性和反应过程。参与者是从瑞典一家县医院的血液透析病房、心脏诊所、肺部诊所和专门的姑息治疗病房招募的。患者患有危及生命的疾病，如晚期心力衰竭、慢性阻塞性肺疾病晚期、终末期肾病或晚期癌症。患者为门诊、住院或家庭护理患者。
患者和家庭照顾者分别认为 MQOL-E 和 QOLLTI-F v2 的项目反映了他们生活质量的相关和重要方面。尽管有些项目需要更多的时间来思考，但这两个工具都被认为易于理解。对翻译中的一些问题进行了修改。参与者表示，在回答问题时反思自己的情况对他们来说是有价值和有意义的，回答问题是表达感受的机会。
与 MQOL-E 和 QOLLTI-F v2 的瑞典翻译有关的反应过程的结果为翻译工具的内容有效性、语言等效性和文化适宜性提供了证据。此外，结果表明，这些工具可以支持患者和/或家庭照顾者与卫生保健专业人员之间关于生活质量重要问题的对话。需要进一步研究来研究瑞典翻译的心理测量特性。
