We have discussed differences between men and women who develop multiple sclerosis. Next we explored how hormones, specifically testosterone, play a significant role in men who develop MS. We saw how testosterone and estradiol affect brain damage seen in women with MS. Then we explored how the pregnancy hormone estriol could be used to treat women with MS.
Today, we will discuss possible differences men and women may have in health-related quality of life, symptom management, treatment management, and even personality.
Compliance and Disease Management
A recent study published in the Journal of Managed Care Pharmacy (JMCP) sought to evaluate gender differences in self-reported clinical characteristics, symptom awareness, and perceived ability to manage therapy among MS patients taking a disease-modifying drug. How do we respond differently to our MS?
Of 4,700 patients surveyed, only 44.1% responded. Of those 2,022 patients, 80.6% were female, 82.3% were relapsing-remitting, and 83.1% were taking Avonex (33.4%), Rebif (15.9%), or Copaxone (33.8%). Curious that Betaseron, Tysabri, or Novantrone were not called out as well, only referred to as the 16.9% who were not using one of the drugs mentioned above.
The flip side of the 2,022 patients who responded is that 19.4% were male (4:1 ratio, women to men) and 17.7% were progressive. Comparatively, the men were typically older and a great proportion of them had more progressive MS. This reinforces what we discussed in MS in Men vs. Women: Does Gender Matter?
What they found was that women were more likely to report a relapse/exacerbation or know what to do when a relapse occurs. Women were also more likely to report knowing what the treatment options are and to believe that the DMD was helping their MS, while also knowing what to do if they missed a dose.
Based on the analysis of the results of this survey, the researchers suggest that male MS patients may need additional education and support in managing their disease and therapy needs. They also suggest that "knowledge of these gender differences potentially could help managed care organizations to improve therapy adherence by guiding gender-specific patient support programs."
This study/survey was support by Express Scripts, Inc., a pharmacy benefit manager. Basically, an increase in compliance is the goal in patients who have MS.
Quality of Life
In another study, researchers surveyed multiple sclerosis patients in Ferrara, Italy, assessing health-related quality of life by using the MSQOL54 questionnaire. We’ve discussed health-related quality of life previously and you can learn more about the MSQOL54 questionnaire here. Included in the study were 370 MS patients (265 women and 105 men) who consistently had worse scores than the general population in all HRQOL dimensions, ranging from 2.5 standard deviations (SD) lower for physical functioning to less then 0.5 SD for mental health.
Analysts found that HRQOL scores were inversely correlated with disability scores. As disability increases, quality of life decreases. This relationship was felt more strongly for men than women in the areas of physical functioning, vitality, social functioning, emotional well-being, and mental health. The inverse relationship was very strong in measures of mental health for men as disability increased, much more so than in women.
Researchers concluded that MS affects health-related quality of life in all of its dimensions - physical and mental - for both men and women. The impact of disability seems to be stronger among men, particularly for mental well-being. The results of this study suggest that interventions should to be gender-specific in order to better meet patients’ needs.
Personality and Needs
The final study I want to highlight today focused on emotional and personality changes patients with MS may experience. It is understandable that a chronic neurological disorder can increase life stresses and affects the patient’s ability to cope with them (see study above). In this small study of 51 MS patients (38 women and 13 men, mean age 42.6 years and mean EDSS disability score of 3.2), all participants were administered the Rorschach Test, otherwise known as the Inkblot Test.
The researchers found that MS patients (in their sample) perceived themselves as being less competent than others, sometimes at a cost to their self-esteem. A large percentage of participants relied on an avoidant-style of coping with problems. I admit that this is sometimes the way I deal with problems, but of course they never go away on their own.
Findings in this study imply that MS patients might have special needs in terms of communication with health care providers, decision making and adherence to their treatment plans because of a simplifying style of information processing. Researchers encourage that "it is important to consider personality as well as cognitive changes in neurological disorders such as MS."
If any conclusion can be made from the three studies presented above, it might be that patients need information and support which is unique to their personal characteristics, whether they be gender, personality, mental health well-being, or level of disability.
RESOURCES: Vlahiotis A, Sedjo R, Cox ER, et al. Gender differences in self-reported symptom awareness and perceived ability to manage therapy with disease-modifying medication among commercially insured multiple sclerosis patients. J Manag Care Pharm, 2010 Apr;16(3):206-16.
Casetta I. Gender differences in health-related quality of life in multiple sclerosis. Multiple Sclerosis, 2009;15(11):1339-1346.
Ozura A, Erdberg P, Sega S. Personality characteristics of multiple sclerosis patients: A Rorschach investigation. Clinical Neurology and Neurosurgery. doi:10.1016/j.clineuro.2010.04.009
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.