US Survey Finds High Rates of Dissatisfaction With Quality of Life, But Satisfaction With Healthcare

More than one-third of people with multiple sclerosis (MS) who responded to an online U.S.-based survey are dissatisfied with their quality of life, and more than one in four MS patients are pessimistic about their future, according to the results of the survey, conducted by Multiple Sclerosis News Today.

Nonetheless, the findings show that about three-quarters of the MS patients surveyed are satisfied with their treatment plan as well as with their health insurance, and four out of five are not considering changing their medication.

Overall, the results indicate that many people with MS are dissatisfied with their quality of life, despite adequate medical care, suggesting that more should be done in terms of patient support/care.

This survey was conducted in collaboration with Bionews Insights, the research arm of Bionews Services, which publishes the Multiple Sclerosis News Today website.

“Although over 70% of MS patients report being satisfied with their health insurance and treatment plans and 80% are not presently considering a medication switch, 40% report being, to some extent, unsatisfied with their quality of life,” Jacob Harney, PhD, research lead at Bionews Insights, said in a statement to Multiple Sclerosis News Today.

Patients with MS “are of great interest to us as we are committed to assessing and sharing with the larger community the issues that need greater attention and investment of resources,” Harney said.

The goal, he said, is “to improve the lives of people living with MS.”

Who answered the survey?

The aim of this online survey, conducted from Feb. 9 to May 6, was to gain greater insight into the characteristics of the MS community, as well as to develop data on disease management, treatment plans, medication side effects, insurance, and patient quality of life.

A total of 1,532 U.S. residents responded to the survey. Most — 1,421, or 92.75% of respondents — were people with MS. The remaining participants included family members or friends of people with MS (6.27%), healthcare professionals (0.78%), and researchers in the MS field (0.2%).

The subsequent analysis focused only on people with MS. The median age of this group was 58, and the median time since diagnosis was 15 years.

Click on the image above to view full-size infographic.

A total of 1,048 MS patients answered survey questions about their gender and 1,381 about their race and ethnicity. Regarding gender, 75.89% identified as female, 23.75% as male, and 0.14% as non-binary or another gender. Most of the respondents (88.78%) were white, while 3.84% identified as Black/African American, and 2.97% as Latin American; other ethnicities made up the remainder.

Most MS patients who responded to a question about education (1,374) held either a bachelor’s degree (30.64%) or a graduate degree (25.62%; master’s, doctorate, law, or medical degree). Another 21.76% had an associate’s or trade school degree, while 16.96% had a high school diploma or GED. The remaining 5.02% reported another education level — most of whom had some level of college.

Of 1,130 patients who reported their annual income, 21.95% had an income of more than $100,000, 23.62% had an income of $60,000-$100,000, 24.78% of $30,000-$60,000, 17.61% of $15,001-$30,000, and 12.04% reported an income of less than $15,000.

Among the 1,321 patients who reported their MS type, about half (51.78%) had relapsing-remitting MS, one quarter (24.22%) had secondary progressive MS, and just less than one-fifth (19.3%) had primary progressive MS. A very small percentage (0.45%) reported having clinically isolated syndrome, and 4.16% said they were unsure of their MS type.

The most common MS symptoms — affecting more than half of the 1,166 patients who responded to this question — were numbness and tingling (78.22%), weakness (68.27%), difficulty walking (65.27%), heat sensitivity (62.35%), and bladder dysfunction (54.37%). Symptoms with the highest impact on daily activities, based on 1,268 responses, were difficulty walking (31.86%), pain (9.07%), weakness (8.68%), and mental fatigue (7.73%).

When asked about health insurance, the majority of patients reported having either solely Medicare (42.28%) or private insurance (39.30%). Smaller numbers of respondents had Medicaid (3.77%), Tricare (1.52%), or another health insurance arrangement (10.22%), to include combinations, such as both Medicare and private insurance. Of the 1,379 patients who reported their insurance status, 1.31% said they had no insurance.

How were these patients being cared for?

Almost all of the MS patients surveyed (95.21%, 1,113 of 1,169 responses) reported seeing a neurologist. Nearly four in five (79.9%) were seeing a general or primary care practitioner; others reported being seen by physical therapists (20.19%), endocrinologists (7.87%), rheumatologists (4.28%), and/or another type of healthcare provider, including urologists, cardiologists, and psychologists (21.81%).

Regarding treatment, of 1,247 respondents, 85.57% were taking medication related to MS. The remaining 14.43% were not taking anything for the neurodegenerative disorder.

The most commonly used MS therapy was Ocrevus (ocrelizumab), which was given to more than a third (39.77%) of the 963 patients who reported their specific treatment. Other commonly prescribed MS disease-modifying treatments or DMTs — that is, medications that have been proven to slow the progression of MS — included Tecfidera (dimethyl fumarate; 10.97%), Copaxone (glatimer acetate, 7.58%), and Tysabri (natalizumab, 6.96%).

Additionally, some patients reported using non-DMT medications, such as muscle relaxants or nerve pain medicines, to control their MS symptoms. The most commonly taken medicine was Ampyra (dalfampridine), a muscle strengthener, which was used by 14.64% of the respondents.

The most common side effects related to MS treatment, as reported by 774 patients, were fatigue (44.70%), balance problems (30.23%), constipation (21.19%), back pain (18.86%), insomnia (18.60%), muscle pain (18.22%), and depression (17.96%). The most bothersome ones – according to 742 patients – were fatigue (21.70%) and balance difficulties (11.05%).

Notably, the researchers said that some participants who responded with “other” to this question reported no side effects. It is likely, they said, that many respondents skipped this question because they were not having any side effects.

Nearly three-quarters of respondents — 74.61%, or 905 of 1,213 participants — had previously been on other MS treatment. The most common prior medications, based on responses from 838 patients, were Copaxone (51.31%), followed by Avonex (40.69%), Tecfidera (31.03%), Tysabri (25.30%), Rebif (24.46%), and Betaseron (23.75%).

The most common reasons for treatment discontinuation were a lack of effectiveness (37.88%; 311 of 821 responses), side effects (25.82%), the fact the healthcare team did not find it necessary (8.65%), and cost (2.31%). A quarter of the patients (25.33%) mentioned other reasons for treatment discontinuation, including insurance/co-pay issues and the fact new MS medications became available.

Among the side effects reported while on those previous treatments, the most frequent were injection site reaction (28.25%; 198 of 701 responses), flu-like symptoms (27.10%), fatigue (22.11%), depression (13.12%), and flushing (12.84%). According to 630 respondents, the most bothersome were flu-like symptoms (15.24%), injection site reaction (11.90%), and fatigue (7.94%).

In addition to treatments for MS itself, 90.2% of 1,306 respondents reported taking one or more medications unrelated to MS, such as cholesterol medicines, blood pressure medications, and/or antidepressants. Many also reported using some form of vitamin supplement.

Mobility aids were used by more than half of patients (59.77%, 673 of 1,126). The most commonly used, as reported by 620 patients, were canes (58.06%), walkers (50%), wheelchairs (35.65%), and motorized scooters (23.06%). Nearly 10% (60 of 620) reported using a lift chair.

How did these patients feel about their quality of life and healthcare?

Among the 1,381 MS patients who answered a question about their quality of life, 12.38% were “very satisfied,” 32.95% were “somewhat satisfied,” and 14.92% classified their satisfaction with life as “neutral.”

In turn, nearly 40% reported being unsatisfied: 26.72% were “somewhat unsatisfied,” and 13.03% were “very unsatisfied.”

Despite that, more than half (50.65% of 1,378 patients) said they were optimistic about their future. That included 35.34% of respondents who reported being “somewhat optimistic” and 15.31% who said they were “very optimistic.” The other half either were neutral (21.56%) or pessimistic — 27.79% in all. Of those who were pessimistic, 23.0% reported being “somewhat pessimistic” and 4.79% “very pessimistic.”

Also, patients were mostly satisfied with their current treatment plan, as reported by 71.85% of 1,023 patients. Among them, 37.44% responded that they were “somewhat satisfied” and 34.41% chose a response of “very satisfied.” Just 7.43% of patients reported being “somewhat unsatisfied,” and 1.56% were “very unsatisfied” with their treatment. About one in four (19.16%) responded “neither satisfied nor dissatisfied.”

In fact, more than 80% (832 of 1,031 patients) said they were not considering switching to another medication.

Of the 19.30% of patients considering changing medications, the main reasons reported by 189 individuals were a lack of effectiveness (38.10%), side effects (22.22%), the therapy’s administration method (9.52%), cost (4.76%), and frequency of administration (2.65%).

In line with treatment satisfaction, more than three-quarters (78.17%) of patients also reported being satisfied with their health insurance provider — 38.42% of 1,278 patients were “very satisfied,” and 39.75% were “somewhat satisfied.” Conversely, 6.89% were “somewhat unsatisfied,” and 1.33% said they were “very unsatisfied.” The remaining 13.62% responded “neither satisfied nor dissatisfied” (neutral).

When asked about clinical trials, more than half of patients — 52.1% of the 1,167 who responded — expressed interest in participating. More than a quarter (29.91%) said they were “somewhat likely” to participate in a trial, and 22.19% said they were “extremely likely” to do so. Only 26.31% said they were unlikely to participate in a clinical trial.

Collectively, the results of this survey highlight a relatively large proportion of MS patients who are dissatisfied with their quality of life, despite an overall high satisfaction with medical care and health insurance.

The findings suggest that more support should be given to MS patients to improve their quality of life and better understand their needs. Further research also could examine more detailed data on factors that determine quality of life for MS patients.