A recent study shows that ‘hidden’ factors have the capacity to influence quality of life (QoL) for MS patients. In clinical trials, traditional measures of quality of life for MS patients center around disease activity and physical disability progression. Measuring things such as relapses and lesions is much easier than measuring non-medical issues related to quality of life; but it reflects only part of the patient’s experience.
Quality of life can be complicated. MS patients may respond well to treatment and be free of significant symptoms, but still have poor QoL due to factors such as depression, inability to work, and relationship issues. They may “look fine” but have a reduced quality of life. Conversely, patients who have accumulated significant physical disability may continue to participate fully in life and view their own QoL in a positive light.
While MS patients need to learn to cope with visible and invisible issues related to MS, discussing these issues with family, friends, or medical professionals may be difficult. Patients and providers both may be reluctant to discuss invisible issues during routine clinical visits. In addition, the problems may be complex and difficult to manage because of the lack of efficient solutions.
A limitation in measuring QoL in MS is the lack of validated tests. Traditional approaches used to measure QoL may lack sensitivity to change and may not allow for easy assessment of all aspects of the disease including ‘hidden’ issues. The Short-Form Health Survey (SF-36) is often used in clinical trials as it assesses eight aspects of physical and mental health but may not be sensitive to changes.
Disease-specific tools have been developed to measure the impact of MS on QoL from a patient’s perspective. These include:
The Patient-Reported Outcome Indices for Multiple Sclerosis (PRIMUS) consists of three distinct scales specific to MS - symptoms, activity limitations, and quality of life - designed to be used in combination or as standalone measures. The scale content was generated directly from MS patients and thus closely represents patients’ experience with MS.
The Multiple Sclerosis Impact Scale (MSIS-29) is a quick 29-item questionnaire that is sensitive in measuring the physical and psychological impact of MS. Patients response to questions which ask for their views about the impact of MS on their day-to-day over the previous two weeks.
Multiple Sclerosis International Quality of Life Questionnaire (MUSIQoL) is a 31-question survey that measures nine factors affecting quality of life: activities of daily living, psychological wellbeing, symptoms, relationships with friends, relationships with family, sentimental and sexual life, coping, rejection, and relationship with healthcare system. The MUSIQoL is more sensitive to measuring QoL changes in patients with more advanced disability.
When is the best time to administer a QoL assessment?
The timing of answering one or more of these questionnaires may affect the quality of the data. Is it fair to administer the test during an appointment when time is limited or after an appointment when the patient may be in a hurry to leave? Or should the survey be given to the patient to complete later with the risk that it may not be completed or returned? Some QoL assessment tools may take up to 45 minutes to complete, such as the 138-item Multiple Sclerosis Quality of Life Inventory (MSQLI) tool developed by the Consortium of MS Centers.
The concept of patients completing a QoL assessment between clinic visits appears practical in terms of efficient use of time and can facilitate patient recall if clinical visits are infrequent (e.g. every 3–6 months), thus improving the quality of the information. Online tools may be particularly useful in this respect. My own neurologist requires every MS patient to complete a short 18-item survey on current symptoms before each visit, but this doesn’t touch on quality of life issues.
For more information on Quality of Life and MS:
Lysandropoulos AP, Havrdova E. ‘Hidden’ factors influencing quality of life in patients with multiple sclerosis. Eur J Neurol. 2015 Oct;22 Suppl 2:28-33. doi: 10.1111/ene.12801.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.