Tool to measure quality of life in MS

Neuro-QoL is a measurement system that evaluates and monitors the physical, mental, and social effects experienced by adults and children living with a neurological condition. The development and initial validation was funded by the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS). The administration can be done in multiple forms, either as static short forms or by computer adapted testing.

The domains for adult assessment include physical, mental, and social health (see Table). “This is a very positive step in the overall approach to assess patient-reported outcomes”, Dr Deborah Miller (Cleveland Clinic, OH, USA) mentioned. “We are not only looking at the negative consequences of symptoms, but also at the positive results of improvements in patient functioning.”

Table. Domains for adult assessment in Neuro-QoL



*untested item pools

Dr Miller emphasised the importance of HealthMeasures.net, the organisation which is responsible for the international implementation and modification of not only Neuro-QoL but also other measures: PROMIS®, NIH Toolbox®, and ASCQ-Me®. The website is developed and validated for common neurological conditions, using state-of-science methods which are psychometrically sound. All measures are designed to each be completed within 1 minute. They are also flexible regarding method of administration: there are pen-and-paper, web-based, or interviewer-based methods. Official translations are also available in Spanish and other languages. This set of measures is available without license, fee, or royalty. Neuro-QoL short forms and computerised adaptive test have been validated in MS [1,2].

MS-PATHS

Multiple Sclerosis Partners Advancing Technology and Health Solutions (MS-PATHS) is a technology-enabled network of MS centres through which researchers have access to patient data generated from a broad MS population. It functions as a learning health system. The aim is to better quantify the value of various treatment approaches and improve patient outcomes in MS. Dr Miller thinks that this is a very exciting concept. “At ECTRIMS, there has been a lot of relevant discussion about the importance of clinical practical trials. MS-PATHS is used both for clinical purposes, and for research.” Together with her team she studied symptoms of depression and use of anti-depressants in MS-PATHS patients (n=1,352). Around 40% were prescribed antidepressants and 23% met criteria of major mood disorder. “That suggests that we are doing a pretty good job in determining who has depression and who needs treatment. Unfortunately, we found that 31% of those prescribed antidepressants continued to meet the criteria for major mood disorder. This suggests that we are not paying enough attention to depression and that we are not adequately managing the consequences of depression in a vulnerable patient population.”

Next to Neuro-QoL, no other assessment platform provides unidimensional measures of MS symptoms and functions. There is growing evidence of international interest in the MS community to implement Neuro-QoL. The HealthMeasures organisation provides an infrastructure for an international collaboration to harmonise and optimise Neuro-QoL. The question of Neuro-QoL’s acceptance as tomorrow’s standard patient-reported outcome measure is up to the community of researchers.

1. Miller DM, et al. Mult Scler. 2016;22:830-41.
2. Healy BC, et al. Mult Scler. 2018:1352458518810159.

Posted on 8 November 201922 March 2021