This month’s Editor’s Choice from Palliative Medicine . . .
Robin Cohen, Professor, McGill Departments of Oncology and Medicine and Staff Investigator, Lady Davis Research Institute, Montreal, and Richard Sawatzky, Canada Research Chair in Patient-Reported Outcomes and Associate Professor, School of Nursing, Trinity Western University, Canada, explain the background to their longer article selected as ‘Editor’s choice’ in the February issue 2017 of Palliative Medicine.
The McGill Quality of Life Questionnaire (MQOL) has been widely used in palliative care research since it was first developed more than 20 years ago.1, 2 People often choose to use MQOL rather than other quality of life assessment tools developed for people at the end of life because it has subscales measuring the four main relevant domains: physical, psychological, existential/spiritual, and social. MQOL also has a summary score that weights these domains equally. Most other tools developed to assess the quality of life of people with life-limiting illnesses don’t have subscales, and/or don’t include the existential/spiritual domain, and/or have a primary focus on physical symptoms, or have many more items. MQOL also allows respondents to list their most problematic physical symptoms, rather than providing them with a list which may not represent their most problematic symptoms. With its use over time, we learned through informal feedback and data collected that there are some aspects that could be improved. Our article in the February 2017 issue of Palliative Medicine describes the first new version, MQOL-Revised, and how and why it was created.
Why did it take more than 20 years? Rather than making small changes in several new versions, we wanted to wait so that we could have a definitive revised version. One reason that MQOL stood the test of time is that it was created comparing results from three datasets, rather than finalizing and publishing it based on analysis of a single dataset. Similarly, MQOL-R is based on four new datasets collected in various populations over time (although mainly oncology).
What is new in MQOL-R? In developing MQOL-R, we aimed to maintain the desirable qualities of MQOL while making the following improvements. At 14 items, MQOL-R has two fewer than MQOL. The original MQOL contains two subscales measuring the physical domain (Physical Wellbeing; Physical Symptoms). MQOL-R merges these together, along with an item rating how problematic it is to be physically unable to do everything you’d like to do. Like MQOL, the focus in MQOL-R remains on the impact of your physical condition on your quality of life, rather than on the intensity of symptoms or the extent of your limitations. The MQOL-R Existential Wellbeing subscale has two fewer items compared to that in MQOL (4 vs 6). The end anchors of the item on control of your life have been changed to make no assumption about whether feeling in control is desirable. Instead of rating how much control you have, you rate the extent to which you have the control you wish to have. In MQOL-R, the subscale measuring the social domain has a greater emphasis on relationships and an item that was sometimes unclear has been eliminated. It has been renamed the Social subscale (from Support). MQOL-R was developed simultaneously in English and in French.
Validation for MQOL-R, as for any patient-reported outcome measure, is an ongoing process. Measurement validity means that 1) we are justified in using the scores to answer the question of interest and 2) the actions and decisions based on that answer are warranted. 3 At a minimum, this involves taking into account the purpose, population, and context. Future research should focus on measurement validation pertaining to the use of MQOL-R for a range of purposes and of situations.
To obtain a copy of MQOL-R (or MQOL) along with scoring instructions, email Robin Cohen. If you are not using it for profit, it is free to use.
- Cohen SR, Mount BM, Tomas JJ, Mount LF. Existential well-being is an important determinant of quality of life. Evidence from the McGill Quality of Life Questionnaire. Cancer. 1996; 77 (3): 576-86.
- Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med. 1997;11 (1):3-20.
- Sawatzky R, Chan EK, Zumbo BD, Ahmed S, Bartlett SJ, Bingham CO, 3rd, et al. Modern perspectives of measurement validation emphasize justification of inferences based on patient-reported outcome scores: seventh paper in a series on patient reported outcomes. J Clin Epidemiol. 2016.
Read the full article in Palliative Medicine
This blog post relates to the longer article, ‘Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire – Revised’ by S Robin. Cohen, Richard Sawatzky, Lara B Russell, Javad Shahidi, Daren K Heyland and Anne M Gadermann, published in Palliative Medicine 2017, Vol. 31(2) 120-129. http://journals.sagepub.com/doi/10.1177/0269216316659603.
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