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      More comprehensively measuring quality of life in life-threatening illness: the McGill Quality of Life Questionnaire – Expanded

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          Abstract

          Background

          Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) – Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL – Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance.

          Methods

          Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics.

          Results

          Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033).

          Conclusions

          MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

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          Most cited references22

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          Existential well-being is an important determinant of quality of life. Evidence from the McGill Quality of Life Questionnaire.

          The McGill Quality of Life Questionnaire (MQOL) is being developed to correct what we perceive to be a flaw in existing quality of life instruments: neglect of the existential domain. This study reports the first use of MQOL for people with cancer at all phases of the disease, including those with no evidence of disease after therapy. The data suggest that MQOL is comprised of an item measuring physical well-being and four subscales: physical symptoms, psychological symptoms, existential well-being, and support. MQOL is acceptable to oncology outpatients. Correlation of the MQOL total and subscale scores with a single item scale measuring overall quality of life and with the Spitzer Quality of Life Index suggests that MQOL has construct and concurrent validity. The hypothesis that the existential domain is important, especially to those patients with a life-threatening illness, is supported because multiple regression showed that the existential subscale is at least as important as any other subscale in predicting a single item scale measuring the overall quality of life and plays a greater role in determining the quality of life of patients with local or metastatic disease than in patients with no evidence of disease.
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            What Lies behind the Wish to Hasten Death? A Systematic Review and Meta-Ethnography from the Perspective of Patients

            Background There is a need for an in-depth approach to the meaning of the wish to hasten death (WTHD). This study aims to understand the experience of patients with serious or incurable illness who express such a wish. Methods and Findings Systematic review and meta-ethnography of qualitative studies from the patient's perspective. Studies were identified through six databases (ISI, PubMed, PsycINFO, CINAHL, CUIDEN and the Cochrane Register of Controlled Trials), together with citation searches and consultation with experts. Finally, seven studies reporting the experiences of 155 patients were included. The seven-stage Noblit and Hare approach was applied, using reciprocal translation and line-of-argument synthesis. Six main themes emerged giving meaning to the WTHD: WTHD in response to physical/psychological/spiritual suffering, loss of self, fear of dying, the desire to live but not in this way, WTHD as a way of ending suffering, and WTHD as a kind of control over one's life (‘having an ace up one's sleeve just in case’). An explanatory model was developed which showed the WTHD to be a reactive phenomenon: a response to multidimensional suffering, rather than only one aspect of the despair that may accompany this suffering. According to this model the factors that lead to the emergence of WTHD are total suffering, loss of self and fear, which together produce an overwhelming emotional distress that generates the WTHD as a way out, i.e. to cease living in this way and to put an end to suffering while maintaining some control over the situation. Conclusions The expression of the WTHD in these patients is a response to overwhelming emotional distress and has different meanings, which do not necessarily imply a genuine wish to hasten one's death. These meanings, which have a causal relationship to the phenomenon, should be taken into account when drawing up care plans.
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              Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire-Revised.

              The McGill Quality of Life Questionnaire has been widely used with people with life-threatening illnesses without modification since its publication in 1996. With use, areas for improvement have emerged; therefore, various minor modifications were tested over time.
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                Author and article information

                Contributors
                514 340-8222 ext 25676 , robin.cohen@mcgill.ca
                lrussell@cheos.ubc.ca
                anne.leis@usask.ca
                jshahidi@yahoo.com
                Pat.Porterfield@nursing.ubc.ca
                david.kuhl@ubc.ca
                anne.gadermann@ubc.ca
                rick.sawatzky@twu.ca
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                31 October 2019
                31 October 2019
                2019
                : 18
                : 92
                Affiliations
                [1 ]ISNI 0000 0004 1936 8649, GRID grid.14709.3b, Departments of Oncology and Medicine, , McGill University, ; Montréal, Canada
                [2 ]Lady Davis Research Institute of the Jewish General Hospital, Palliative Care Research, room E8.06, 3755 Côte Ste. Catherine Road, Montréal, Québec H3T 1E2 Canada
                [3 ]GRID grid.498772.7, Centre for Health Evaluation and Outcomes Sciences, , Providence Health Care Research Institute, ; Vancouver, British Columbia Canada
                [4 ]ISNI 0000 0001 2154 235X, GRID grid.25152.31, Department of Community Health & Epidemiology, College of Medicine, , University of Saskatchewan, ; Saskatoon, Saskatchewan Canada
                [5 ]GRID grid.428496.5, Daiichi Sankyo Inc, ; Basking Ridge, NJ USA
                [6 ]Retired RN, MSN, Vancouver, Canada
                [7 ]ISNI 0000 0001 2288 9830, GRID grid.17091.3e, Departments of Family Practice and Urologic Sciences, , University of British Columbia, ; Vancouver, British Columbia Canada
                [8 ]ISNI 0000 0001 2288 9830, GRID grid.17091.3e, Human Early Learning Partnership, School of Population and Public Health, , University of British Columbia, ; Vancouver, Canada
                [9 ]ISNI 0000 0000 9062 8563, GRID grid.265179.e, School of Nursing, , Trinity Western University, ; Langley, British Columbia Canada
                Author information
                http://orcid.org/0000-0003-2153-8486
                Article
                473
                10.1186/s12904-019-0473-y
                6823967
                31672131
                46d561df-36b1-41a2-8ccd-c5c0aa67569d
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 13 July 2018
                : 26 September 2019
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000015, Canadian Cancer Society Research Institute;
                Award ID: 8057 and 012201
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/501100001804, Canada Research Chairs;
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

                Anesthesiology & Pain management
                quality of life,measurement,psychometrics,end of life,chronic disease,palliative care,burden of illness,chronic illness

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