Jan Abel Olsen
University of Tromsø

I feel honored to have received the QLR Outstanding Article of the Year Award for “A conceptual map of health-related quality of life dimensions: key lessons for a new instrument” (Quality of Life Research https://doi.org/10.1007/s11136-019-02341-3), a paper that was co-authored with Associate Professor RoseAnne Misajon.

I hope that our research might resonate with the ISOQOL community, in particular by acknowledging the need for including psychosocial items in HRQL-instruments.

Project Background

The story behind this work starts with the large scale Multi Instrument Comparison (MIC) project, led by Professor Jeff Richardson, Centre for Health Economics, Monash University in Melbourne, Australia. The MIC-project aimed to compare all health related quality of life (HRQL) instruments that are designed for estimating quality-adjusted life years (QALY), specifically in terms of their descriptive systems and their preference-based value sets.

As part of this work, RoseAnne and I sought to extract patterns of similarities in the descriptive systems. We developed an analytical framework that covers the wider domains of physical, mental and social aspects of health. By use of a conceptual map, we could then illustrate how each instrument differ in terms of which parts are covered and which are left empty. We drew from previous work by Professor Robert Cummins in understanding the differences and overlaps between HRQL and subjective wellbeing (SWB) measures. Next, we drew lessons on which dimension to include in a new instrument, and suggested:

  • mobility, self-care, pain,
  • depression, vitality, sleep (and possibly anxiety),
  • personal relationships, social isolation.

Our suggested descriptive system leans towards the EQ-5D in terms of brevity and structure, and towards AQoL (and PROMIS) by including key items on mental and social health.

Follow Up Research

The award-winning paper came to stimulate further work with Associate Professor Gang Chen, who was also part of the MIC project team. Gang and I have provided empirical support for adding a coherent set of four psychosocial bolt-on dimensions to the EQ-5D, namely: Vitality, Sleep, Social relationships, Community connectedness (Quality of Life Research https://doi.org/10.1007/s11136-020-02576-5). In a follow-up paper (yet to be published) we give further empirical evidence for these four bolt-ons.

In principle, I see three approaches to the need for including psychosocial items in HRQL-instruments.

  1. One approach is to start developing a completely new instrument. An important contribution in that direction is the work carried out by Professor John Brazier and his team in the ‘Extending the QALY’ project at Sheffield university.
  2. An alternative approach is to revise and improve existing QALY-instruments.
  3. A third approach is to build a stand-alone extension to the most extensively applied existing instrument.

Our research reflects the third approach: The EQ-5D holds a dominant position with a market share of around 2/3 of applied cost-utility analysis. Given that many studies have a long time horizon, we expect the instrument to live on. Second, as compared to its contenders, the brevity and cognitive simplicity of the EQ-5D makes it the most attractive to include as part of a lengthy questionnaire. Third, when there is a need to account for wider psychosocial aspects of health, rather than including an additional complete QALY-instrument (and most of them are long!), we believe a better option is to complement the EQ-5D with a stand-alone extension.

Acknowledgement

Finally, I would like to acknowledge all participants at the MIC-workshop in 2014 (including invited speakers Professor John Brazier, and a previous recipient of the QLR Outstanding Article Award, Professor Julie Ratcliffe), that was arranged at the spectacular island of Sommarøy in the land of the midnight sun. It was then and there the idea behind this paper was born!

This newsletter editorial represents the views of the author and do not necessarily reflect the views of ISOQOL. 

The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.