In Part One, Quality of Life for MS Patients: Is it Health-Related?, we outlined four aspects to quality of life which include clinical health, role-performance, adaptability, and well-being.
In Part Two, Quality of Life for MS Patients: The Role of Disease-Modifying Treatments, we discussed the six FDA-approved disease-modifying agents and their function in protecting quality of life.
In Part Three, Quality of Life for MS Patients: The Impact of Comprehensive Rehabilitation, we discussed the benefits of physical therapy and the importance of professional guidance in preserving quality of life.
In Part Four, Quality of LIfe for MS Patients: The Psychosocial Aspects of Chronic Disease, we will discuss the perception of well-being and how specific symptoms may affect a patient’s well-being.
Perhaps the most important element in the Health-related Quality of Life concept, the Perception of Well-Being, is rooted in the psychosocial aspects of the disease. This includes the impact of symptoms, disease progression, and how patients view themselves in various life settings. Are they fulfilled and living up to the roles expected of them? Is there a feeling of happiness inside despite obstacles, or one of gloom and despair?
Consider these wise words from our MS community members:
"I think quality of life is in the eye of the beholder, as individual as MS itself." - Mandy
"I believe it is important to be able to pursue the work and social activities that one desires, and I would be lying if I said that my quality of life has not been affected since I had to leave work." - Denise
"For me when you look at a person’s quality of life, you must look at the whole person. Inside and out, not being able to walk because of spasticity may have done a real self esteem job on that person, not being able to function all day because of fatigue issues. All of these issues would need to be addressed. It just depends on the person." - Sherry (momdukes)
It is important to understand that the perception of well-being often changes over time and across one’s lifespan. Individuals may adjust their internal standards, their values, and the meaning of quality of life in response to significant health-related challenges
When a patient is newly diagnosed, he/she may be overwhelmed with fear and anxiety with innumerable unanswerable questions of the future. In this situation, psychosocial interventions such as group therapy and educational sessions have been shown to help MS patients adjust to their illness.
At the neurology clinic I attend, the MS nurse and head neurologist offer a 10-month "Newly Diagnosed" series of meetings. Each session is designed to cover a particular topic related to MS and offers time to ask questions, compare notes with other patients, and allow caregivers to gain support as well. It was the very best experience I had to help carry me through the first year post-diagnosis which can often be the toughest emotionally.
This type of psychosocial intervention helped to establish and teach coping skills which have helped me to adjust to changing physical abilities while maintaining or improving my quality of life. A 2-year randomized and prospective study found that patient involvement in a coping-skills group was shown to reduce psychosocial role limitations and increase social activity, satisfaction with family, general well-being, and global life satisfaction despite continued neurologic deterioration. See Schwartz CE. Teaching coping skills enhances quality of life more than peer support: Results of a randomized trial with multiple sclerosis patients. Health Psychology. 1999 May; 18(3):211-220.
It was interesting this same study showed that a peer telephone support intervention was less effective and led to negative self-appraisal of abilities of patients who participated. However, the peer telephone support technique did prove helpful in depressed patients for measures of coping and well-being. Depression is common in MS patients and should be recognized as a unique symptom of multiple sclerosis which is separate from the emotional reaction to changes caused by MS.
In thinking of other symptoms which affect a patient’s quality of life and ability to maintain employment and participate in social activities, the cognitive issues may place more barriers than the physical. Here is a round-up of what has already been said on MultipleSclerosisCentral.com about cognitive issues and dysfunction.
Mandy talked about her Fears and frequent Word Salads. I shared Cognitive Function, Multiple Sclerosis, and Neuropsychology which focused on the various tests used to detect cognitive dysfunctions. Dr. Kantor discussed the Causes of Cognitive Dysfunction and Techniques for Coping with Symptoms.
It is important that if you are experiencing difficulties at work, you should tell your doctor who should refer you for screening of cognitive dysfunction. Early recognition of a cognitive disorder could allow you to renegotiate job duties, receive disability entitlements, and/or obtain treatment for this symptoms. Failure to recognize cognitive symptoms could lead to job termination for poor work performance which would certainly have a negative impact upon quality of life.
In essence, addressing the psychosocial aspects of this disease is an ongoing task. Life circumstances are never static and the ability of patients to re-evaluate their life and find new meaning in the face of changing health is vital to maintaining a higher level Quality of Life.
If you are experiencing difficulties in any psychosocial aspect of your life, please talk to your healthcare provider about it. There are strategies to help improve and maintain your Health-Related Quality of LIfe. Your Perception of Well-Being is every bit as important as your Physical Abilities.
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.