As you know, MS is a chronic and highly variable disease that often leads to difficulty with daily activities and challenges to quality of life. However, not everyone experiences symptoms of MS in the same way, and some people have patterns of symptoms (like fatigue and pain) that others do not.
In our CircaMS study, we employ several validated measures to understand these symptoms. Multiple standardized assessments help us understand the varied experiences of people with MS, guiding our research.
Let’s take a closer look at the assessments in the CircaMS baseline battery.
Multiple Sclerosis Quality of Life Inventory (MSQLI):
The MSQLI focuses on physical and mental health, this questionnaire provides insights into various aspects of an individual’s quality of life, aiding in understanding the broader impact of MS. It was created by the Consortium of Multiple Sclerosis Centers (CMSC) to address the unique challenges and experiences faced by people living with MS.
Modified Fatigue Impact Scale (MFIS):
The MFIS is a modified form of the Fatigue Impact Scale based on items derived from interviews with MS patients concerning how fatigue impacts their lives. This instrument provides an assessment of the effects of fatigue in terms of physical, cognitive, and psychosocial functioning. It was developed by Lauren B. Krupp, Nancy G. LaRocca, John D. Muir-Nash, and David Steinberg, in 1989.
Patient-Reported Outcomes Measurement Information System (PROMIS) Fatigue MS-8a for fatigue
There is a growing number of patient-reported outcome measures of fatigue being used in multiple sclerosis clinical trials and clinics. The PROMIS Fatigue (MS) 8a scores have shown high responsiveness to fatigue changes. The questionnaire consists of 8 items that assess the severity and impact of fatigue on daily functioning and quality of life in MS patients. It was developed in 2004, by the National Institutes of Health
Mental Health Inventory (MHI)
The MHI was developed as part of the National Health Insurance Study in 1976 and has been studied extensively in a variety of populations. This instrument provides an assessment of several domains of mental health including anxiety, depression, behavioral control, positive affect, and general distress. The full-length MHI consists of 18 items while the abbreviated version has 5 items. While MS primarily affects the central nervous system, it can also have significant impacts on mental health.
MOS Pain Effects Scale (PES),
The PES provides an assessment of the ways in which pain and unpleasant sensations interfere with mood, ability to walk or move, sleep, work, recreation, and enjoyment of life. Using this scale, researchers can gain insight into the multidimensional impact of pain on individuals’ lives.
Patient Health Questionnaire-4 (PHQ-4) anxiety and mood
The PHQ-4 allows for ultra-brief and accurate measurements of core symptoms/signs of depression and anxiety by combining the two-item measure (PHQ–2), consisting of core criteria for depression, as well as a two-item measure for anxiety (GAD–2), both of which have independently been shown to be good brief screening tools. The total PHQ–4 score complements the other scores as an overall measure of symptom burden, as well as functional disability. It was first published in 2009.
MSQLI Perceived Deficit Questionnaire (PDQ) for cognitive function
The PDQ was developed by Sullivan et al, in 1990 specifically for MS in order to provide a self-report measure of cognitive dysfunction. This instrument provides an assessment of several domains of cognitive functioning that are frequently affected in MS: attention, retrospective memory, prospective memory, and planning and organization.
PROMISnq PFMS-15 for physical function
The PROMISnq PFMS-15 was developed to assess physical function in relapsing and progressive MS. The PFMS-15 specifically focuses on evaluating physical function, including activities such as walking, self-care, and mobility.
Hospital Anxiety and Depression Scale (HADS):
The HAD scale, developed by Zigmond & Snaith in 1983, assesses anxiety and depression in individuals with MS. Mental health concerns are prevalent in MS, and this tool helps identify and address them. The scale is a 14-item measure designed to assess anxiety and depression symptoms in medical patients, with emphasis on reducing the impact of physical illness on the total score.
Godin leisure-time exercise questionnaire (GLTEQ):
The GLTEQ is a common self-report measure of physical activity for persons with multiple sclerosis. The scores from this questionnaire are reliable measures of physical activity in persons with multiple sclerosis. Understanding activity patterns helps in tailoring exercise recommendations for managing MS symptoms. It was developed by Dr. Kenneth E. Godin in 1985.
Reduced Morningness-Eveningness Questionnaire (rMEQ):
The MEQ is a self-assessment questionnaire developed by researchers James A. Horne and Olov Östberg in 1976. Its main purpose is to measure whether a person’s circadian rhythm (biological clock) produces peak alertness in the morning, in the evening, or in between. The Reduced Morningness-Eveningness Questionnaire (rMEQ) was developed by researchers Giovanni Costa, Rodolfo A. Oliveira, and Dina Marqueze. They created the shortened version of the Morningness-Eveningness Questionnaire (MEQ) to provide a quicker and more convenient assessment of chronotype preferences.
Brief Pain Inventory (BPI):
The BPI has become one of the most widely used measurement tools for assessing clinical pain. The BPI allows patients to rate the severity of their pain and the degree to which their pain interferes with common dimensions of feeling and function. It was developed in 1984.
Structured questionnaires used in multiple sclerosis research are essential because they provide a standardized, systematic approach to comprehensively assess the diverse and complex impacts of MS across various domains like physical function, cognition, mental health, quality of life, and more. These questionnaires are designed and validated, ensuring reliability and consistency in data collection, and allowing for comparisons across different studies and populations.
Using these questionnaires at the beginning of our study, or baseline, helps us to understand the initial state of an individual’s symptoms and functions. It’s like taking a picture of how things are before any intervention or change occurs. This starting point helps track progress or changes over time and compare inter-individual differences in symptomatology.
Written by Katie Goddard
References:
The Brief Pain Inventory . MD Anderson Cancer Center. (n.d.). https://www.mdanderson.org/documents/Departments-and-Divisions/Symptom-Research/BPI_UserGuide.pdf
Danielsson, K., Sakarya, A., & Jansson-Fröjmark, M. (2019). The reduced Morningness-Eveningness Questionnaire: Psychometric properties and related factors in a young Swedish population. Chronobiology international, 36(4), 530–540. https://doi.org/10.1080/07420528.2018.1564322
Hospital anxiety and depression scale. Hospital Anxiety and Depression Scale – an overview | ScienceDirect Topics. (n.d.). https://www.sciencedirect.com/topics/medicine-and-dentistry/hospital-anxiety-and-depression-scale#:~:text=The%20Hospital%20Anxiety%20Depression%20Scale,et%20al.%2C%202016).
Kamudoni, P., Johns, J., Cook, K. F., Salem, R., Salek, S., Raab, J., Middleton, R., Henke, C., & Amtmann, D. (2022). A comparison of the measurement properties of the promis fatigue (MS) 8A against Legacy Fatigue Questionnaires. Multiple Sclerosis and Related Disorders, 66, 104048. https://doi.org/10.1016/j.msard.2022.104048
Kroenke, K., & Löwe, B. (2009). An ultra-brief screening scale for anxiety and depression: The PHQ-4. https://read.qxmd.com/read/19996233/an-ultra-brief-screening-scale-for-anxiety-and-depression-the-phq-4?redirected=slug
Mental health inventory (MHI). National Multiple Sclerosis Society. (n.d.-a). https://www.nationalmssociety.org/For-Professionals/Researchers/Resources-for-MS-Researchers/Research-Tools/Clinical-Study-Measures/Mental-Health-Inventory-(MHI)
Mos pain effects scale (PES). National Multiple Sclerosis Society. (n.d.). https://www.nationalmssociety.org/For-Professionals/Researchers/Resources-for-MS-Researchers/Research-Tools/Clinical-Study-Measures/MOS-Pain-Effects-Scale-(PES)
Perceived deficits questionnaire (PDQ). National Multiple Sclerosis Society. (n.d.-c). https://www.nationalmssociety.org/For-Professionals/Researchers/Resources-for-MS-Researchers/Research-Tools/Clinical-Study-Measures/Perceived-Deficits-Questionnaire-(PDQ)#:~:text=This%20instrument%20provides%20an%20assessment,abbreviated%20version%20has%205%20items.
Sikes, E. M., Richardson, E. V., Cederberg, K. J., Sasaki, J. E., Sandroff, B. M., & Motl, R. W. (2019). Use of the Godin leisure-time exercise questionnaire in multiple sclerosis research: a comprehensive narrative review. Disability and rehabilitation, 41(11), 1243–1267. https://doi.org/10.1080/09638288.2018.1424956