What do you think of when you consider “quality of life”? Do end-of-life issues come to mind? How about disability or an inability to enjoy life? Or, what about something as simple as holding your grandchild? This is the first post in a series of Quality of Life topics.
When I think of quality of life, I picture having the ability to do the things I wish to do. Maybe that’s enjoying a day going to the movies without getting fatigued, or being able to remain gainfully employed, or even just being able to contribute to the family’s needs. To do so, I choose to foster personal strengths, develop coping strategies, gain information and knowledge, while cultivating a positive outlook and the ability to choose joy. These things are not always easy, multiple sclerosis or not.
As you may know, multiple sclerosis is a chronic, disabling, and progressive disease characterized by inflammatory demyelination within the central nervous system (CNS). Symptoms which vary greatly depend upon the location of lesions can include sensory or motor disturbances (ie. numbness, pain, coordination difficulties, and weakness), bladder and/or bowel dysfunction, optic neuritis, severe fatigue, sexual dysfunction, spasticity, and cognitive decline.
Consider Health-Related Quality of Life (HRQOL) which is important to patients and should be one of the primary objectives in the management of all chronic diseases, including MS. Regardless of the disease, the patient can cope and live a more productive life if HRQOL is maintained. For an excellent primer on HRQOL, see Measuring Health-Related Quality of Life Annals of Internal Medicine. 1993 April; 118(8):622-629.
HRQOL is a multidimensional concept that includes an individual’s perception of their general well-being and the level of role-fulfillment across a range of different physical, psychosocial, and symptom-related phenomenon. Four aspects to quality of life include clinical health, role-performance, adaptability, and well-being. The major factors contributing to quality of life for the patient are ability to perform daily activities, level of well-being, satisfaction with life, and the impact of disease-related symptoms.
Generic instruments (surveys) to assess quality of life include the 36-Item Short-Form Health Survey (SF-36), the Sickness Impact Profile (SIP), and the EuroQol EQ-5D. Multiple sclerosis-specific validated instruments to assess quality of life include the Hamburg Quality of Life Questionnaire in MS (HAQUAMS), the Leeds MS Quality of Life (LMSQOL), and the RAYS scale.
The MS Quality of Life 54 (MSQOL-54) combines the Short-Form Health Survey (SF-36) with 18 additional items relevant for MS. The SF-36 scales include physical function, role-physical, bodily pain, health perceptions, vitality energy, social function, role-emotional, and mental health. The additional 18 items include measurements of health distress, sexual function & satisfaction, pain, and more-specific social function. A related combination instrument is the Functional Assessment of MS (FAMS).