Of 15 participants, twelve were female, and three were male (80% women, 20% men). These percentages are similar to the general MS population in the United States [1]. The mean age of the participants was 44.3 years, SD ± 15.1. Years with MS ranged from one year to 38 years. The mean length of time since diagnosis was 13.3 years, SD ± 11.5. Some participants no longer worked secondary to MS, while others were employed full-time. Two participants were full-time college students. The participants for this study resided in varied geographic areas providing a good representation of the United States. The participants lived in urban, suburban, and rural areas throughout the United States.

Five clearly defined themes emerged as promoters of HRQOL (Fig. 1). These themes are mental/emotional health, knowledge/education about MS, family and peer support, lifestyle behaviors, and social engagement. Additionally, five main barriers to achieving better health and quality of life were present in the data (Fig. 2). These barriers included limited access to specialized care, lack of communication and empathy from medical providers, lack of comprehensive care addressing all health-related needs, challenges caused by MS symptoms, and difficulty navigating the healthcare and insurance landscape. Lastly, participants were asked to look at the list of eight domains of health as reported on the short form 36 (SF-36) to identify the domains of health that are essential to have a good QOL living with MS and to list the top three domains that are the most important to live your best life with MS. Mental health, role emotional, and social function were the most frequently cited domains, see Table 2. Table 2 lists the frequency of the items identified by the 15 participants. In the second column, Top 3 Most Important to Live Best Life, all participants were required to report 3 items, for a total of 45 reported items. In the first column, participants were allowed to report variably between 1 and 3 items, where a total of 33 reported items were collected.

Fig. 1
figure 1

Promotors of health related quality of life

Fig. 2
figure 2
Table 2 Top dimensions of health reported as essential for improving HRQOL

Promotors of health related quality of life

Mental/emotional health

This study identified mental and emotional health as the most important facilitator of their HRQOL. Nearly all participants (13/15) discussed mental and emotional health as having a considerable influence on their overall HRQOL. Identifying, diagnosing, and addressing mental/emotional health concerns were the most frequently discussed theme when asked about what is needed to live healthily and well with MS. The top three identified HRQOL promoters were mental and emotional health, lifestyle behaviors (diet, exercise), and family and peer support. One participant stated, “MS affects all parts of your brain, which affects not just physical, but mental and emotional health too. Making sure to address that, so your whole self is better, is important.”

Eight participants reported suffering from depression, anxiety, or other mental/emotional health problems throughout their MS disease course, representing over 50% of the study participants. Only two participants of the eight reported ever receiving any intervention for their mental health needs. Four of the six participants who did not receive mental health interventions expressed a strong desire to discuss mental and emotional health with their healthcare providers. “I want to be mentally healthy,” stated one participant, commenting that no provider has asked her about mental health, and no support has ever been offered. Another participant indicated her QOL is not as good as it could be because of her mental health, and she voiced how beneficial it would be to have a provider address these needs. Conversely, mental and emotional health was also identified as the greatest need, yet the area reported to be mentioned the least. The barriers to improving mental and emotional health were described as lack of comprehensive care, poor healthcare coverage, and lack of compassionate and caring providers.

Fourteen out of fifteen participants reported having a positive outlook and attitude as a strong promoter of a good HRQOL. Optimistic views, never giving up hope, learning about MS, and staying positive were essential for living well with MS. This positive outlook was also a desired attribute from providers; study participants wanted to see a positive attitude in their healthcare providers, family, community, and friends.

Social engagement

According to 14/15 participants, having peer support, positive social interaction with peers or other individuals with MS, and close personal relationships were necessary to have a good QOL. Participants spent significant time talking about their social circle, or lack thereof, and the importance of social engagement to their overall wellbeing. The college-age participants described the impact that a lack of social interactions has on the individual. “Universities could do better at providing opportunities for disabled students,” reported one college-age participant. Both college students verbalized a strong desire to stay engaged and interact with peers and their college community.

“For me, one of my big difficulties with MS was social because I had just started college with this diagnosis and with I guess the fatigue issues I had, I could not go to the football games and the basketball games, and so I guess it is more just extra social things, that are important to my mental health, but at college, these social [things] are not easy to do.”

Five other participants cited the fear of social isolation as a reoccurring concern and detractor from HRQOL. One study participant stated, “I really do not have that much of a support system, and it is isolating.” Participants shared experiences of feeling isolated due to common MS symptoms and lack of peer or family support. Connecting with others who have MS and therefore understanding the challenges of MS was reported to help mitigate social isolation fears. “I think when you are talking to other people who have had MS– especially if you are newly diagnosed; they know what you are going through, and it helps.” Receiving education from peers about MS was frequently cited as a strong promoter of a good HRQOL, especially for those newly diagnosed.

Employment status was another identified promoter of a good HRQOL linked to social engagement. Individuals in the workforce cited working as a positive influencer for their current HRQOL, tying in the workplace with social engagement. “I have always worked, and thankfully I have always been able to work,” said one individual. He further explained the benefits he received from working, such as providing for his family, staying socially engaged, and physically active. Participants who were unable to work reported social isolation, financial and insurance problems, and emotional health concerns resulting from unemployment.

When participants reported barriers or areas of need to improve HRQOL, most participants linked decreased social roles or community engagement causing an overall negative effect on their QOL. Like mental and emotional health needs, social needs were ranked high on the HRQOL promotors but also near the top of domains in health that need to improve to facilitate better HRQOL.

Family and peer support

Family and peer support was another theme expressed as a strong facilitator for HRQOL. All fifteen participants communicated the positive benefits of family and peer support throughout the interview. Neighbors, friends, coworkers, and church members were described as providing physical, mental, social, financial, and educational support. This support increased positivity and a sense of purpose, ultimately leading to a greater perceived QOL. “A strong support system from a lot of different places,” voiced one participant when asked about facilitators of good health. One participant stated, “I found out the hard part with MS is it can be very hidden, and people do not see your pain or your weakness until you are showing symptoms.” She further stated how beneficial having a support system can be because of these “hidden” symptoms. When pressed to explain this further, she explained that support systems understand you and your MS, which is not always the case with people I do not know.

Engaging in the MS community for 12 participants was another critical support system. One participant stated, “I am a member of a group of moms with MS….and that kind of helps just to feel like I am not alone; I am not crazy going through all this.” Three additional participants specifically cited connecting with others who had MS as emotionally beneficial. Although family and peers were ranked as most important in supporting the participants, twelve participants cited the MS community as an additional and significant support source. One participant currently navigating college articulated, “when you are talking to other people who have it [MS], they know what you are going through.” She expressed a deep desire to connect with others who understand the lived experience with MS. Another participant, also in college, reported that getting involved in the MS community led to her receiving a scholarship from the NMSS that helped her stay in college; when MS was causing “problems.” Some participants became involved in even more structured MS communities as well. “I have actually been leading and continue to lead a self-help group for Latinas with MS,” stated one middle-aged participant. She continued to explain how her involvement in the MS community keeps her feeling engaged and vibrant despite MS.

Spirituality and religion were also frequently brought up when discussing support systems. Several participants reported spirituality, a relationship with God, or their church group as essential to their overall QOL. The religious community for them was described as a strong sense of social interaction and support they could rely on.

“I think that MS has strengthened my relationship with God. I am a spiritual person, and so I have faith that God will hear my prayers and that if I do my part, I’ll be blessed, and he’ll help me overcome these challenges that come my way related to MS.”

Lifestyle behaviors

Another prominent theme that participants discussed frequently was diet, nutrition, exercise, physical therapy, and general wellness strategies. Participants reported that to promote healthy living with MS, they realized lifestyle behaviors such as diet and exercise were essential to improve their overall HRQOL. Fourteen participants reported exercise and physical activity as essential components of their own health promotion. “Exercise, I think, is extremely important,” stated one participant. He further expressed how exercise has prevented him from “succumbing” to some of the MS symptoms he has experienced. Walking and general physical activity were explicitly reported as improving mental and emotional health, QOL, overall improved health, and physical function. “I think that being able to exercise no matter what, whether it is a stationary bike or whether it is whatever you love to do, yoga or something, I think that is huge for a person with MS, to find something that can keep them physically strong and emotionally well,” stated a participant.

Participants defined physical activity as staying active, engaging with family and peers, maintaining employment, participating in hobbies, and accessing their community. Participants detailed how physical activity allowed for meaningful experiences with their family, community, children, and peers. One participant stated, “exercise can lead to a social life.” Fourteen participants reported exercise, yoga, or Pilates as beneficial promoters of overall HRQOL. “I am not the kind of person that loves exercise. I have to really push myself to do it. But I do feel better when I do it, and I know that improves my quality of life.” Another participant reported, “I have been doing yoga off and on for 17 years, and I modify as needed, but it really helps me move better”. All participants expressed that healthcare providers’ emphasis and guidance on exercise and physical activity would improve their HRQOL. Despite the desire for information on exercise, participants only reported exercise guidance if they received physical therapy services. Participants also linked lower HRQOL to a lack of diet and exercise knowledge. Commonly lack of understanding of essential diet, exercise, and stress management strategies was perceived as an area of need to improve overall HRQOL. Barriers to lifestyle needs were deeply rooted in the feeling that medical care lacked comprehensive care and providers were only focusing on medical and physical symptoms of MS.

Nine of the fifteen participants reported diet, nutrition, and or supplements as strategies they specifically use to improve their health and wellness and overall HRQOL. Eight of the nine participants indicated they investigated and implemented diet strategies independently versus receiving guidance from their healthcare providers. “You want that education piece to be there, not just the pharmacological management but diet and nutrition or other ways to also be healthy.” The participant articulated that not enough value was placed on diet and lifestyle behaviors during her medical visits. Diet was one of the most frequently cited themes participants wanted to see improvements made to enhance their HRQOL. One male participant summed it up, stating,

“MS completely kind of changed my lifestyle completely changed my diet. I was already a very active individual but began making exercise more of a daily routine. So I have been able to, I feel like, manage my symptoms over the past almost 11 years now with diet, exercise, and then stress management. I try to get some sunshine, spend as much time in the sun as I can too.”

Five participants reported that physical therapy improved their HRQOL, and all five reported receiving an exercise plan that helped improve their mobility. These participants indicated they would like physical therapy or access to a professional who can more routinely assist with an exercise program to improve their current QOL. The other 10 participants reported that their providers never brought up exercise or physical therapy. Feelings of uncertainty about exercise were routinely reported as obstacles to improving their HRQOL. “I would love for somebody to just draw out an exercise plan for me.” This young female participant continued to discuss how this exercise plan would benefit her physical, mental, and overall health.

Knowledge and education on multiple sclerosis

Receiving patient-centered education with credible information about living healthy and well with MS was voiced by all participants as essential to HRQOL. Participants reported that education from their providers and the National MS Society (NMSS) positively influenced their ability to live well with MS. “I think it is really empowering to have all that knowledge and information,” said one female. The most commonly expressed need for increased education was related to exacerbations, fatigue management, stress reduction, cognitive changes, mental health, lifestyle behaviors, and general MS strategies for heat sensitivity. Participants in this study wanted more information on MS and for that information to come from their MS clinic or MS providers. Participants described how they gathered information from different sources and often felt overwhelmed or confused when determining what was accurate information on MS. When presented with good quality information; participants discussed how that information assisted them in improving or maintaining a high HRQOL.

Perceived quality of life barriers

Throughout the interviews, participants frequently portrayed discrepancies between what they reported as essential for their health versus what they were currently receiving for healthcare. This group reported limited access to certain types of care such as mental health, instruction on lifestyle behaviors (diet, exercise), and accessing their community. They also described barriers related to social isolation concerns, challenges due to MS symptoms, difficulty navigating the healthcare and insurance landscape, and poor communication and empathy from healthcare providers. This group of individuals felt that specialized providers’ education and information related to MS would significantly elevate their QOL.

While every participant discussed physical symptoms associated with MS and its impact on HRQOL, the physical health domain was not what the conversation centered around. Instead, participants highlighted health aspects outside the physical dimension of health as most influential to their HRQOL. Participants described unique and specific needs to their situation and MS presentation. All fifteen participants reported barriers to better HRQOL related to five common reasons: lack of MS-specific knowledge, limited access to specialized care, limited communication and empathy from their providers, lack of comprehensive care, and difficulty navigating the healthcare and insurance landscape.

Thirteen of fifteen individuals reported their healthcare providers did not discuss lifestyle factors such as diet and exercise. “Education about nutrition [is important] because there seems to be confusion about what is good for MS, simple classes for people to learn about diet would be a big help,” stated one middle-aged female when discussing her desire for more lifestyle information from her providers. Most participants saw this lack of dialog as a significant obstacle to achieving better health. “I am trying to avoid any other health issues; just having a good general well-being with exercise is tough but very important.” Although several participants mentioned vitamins and supplements throughout the interviews as strategies to stay healthy, participants did not mention their disease-modifying MS medication. Participants did not discuss medications at all. Participants instead focused their attention on other aspects of health during these interviews. The only participant to mention medication brought up medication to demonstrate that medicationss should be included in her treatments.

“I have a lot of lesions up at my brain stem, which causes nystagmus and bladder issues. I have some bladder issues that I have had for a while. But I see a urologist, so they have got me on medication. The leg weakness– I started taking the Ampyra for and special glasses for nystagmus. Diet and exercise would also help me, wouldn’t it?”

Participants reported mental health as the area of health most in need when asked what they specifically need to improve their HRQOL living with MS. “I just feel like perhaps I can get more balance. I think, to me, wellness is balance. And right now, I really do not have much [due to MS]”, said one participant in her fifties. Others voiced that even when referred to therapy or counseling, the provider was not knowledgeable about MS, creating a poor experience. “They offered me counseling, but they [counselor] had no idea what MS was, and that was a problem,” one participant said.

Throughout the interviews, it became apparent that some barriers were due to their location. Several participants reported living too far from specialized providers and noted less than excellent care from providers not specialized in MS. One participant only sees his primary care physician for all his health needs because the closest MS specialist is over 4 h away. Other participants reported having an excellent specialist and attributed their overall success and HRQOL to that specialized care and provider. One recurrent detracter of health was the time between office visits with providers. Participants voiced a thirst for knowledge and more engagement from healthcare providers.

“I want to talk to others who have MS or healthcare professionals that have dealt with MS and just be completely open. I feel like there is– even with incontinence and stuff, there is still kind of– people do not want to talk about it. So I would love an openness in a dialog between a healthcare provider and me. I feel like healthcare providers do not ask the right questions.”

More than half of the participants raised concerns about adequate health insurance coverage for specialized providers. Even when insurance coverage was available, participants reported problems obtaining the care because the process was too complicated or confusing. One participant noted, “It was like a full-time job, going through the right hoops or the right process with the right forms.”

All fifteen participants were eager for information and guidance related to lifestyle behaviors such as diet and exercise. Participants expressed a desire to improve their HRQOL and live healthy despite MS. One participant remarked how a lack of information on diet and exercise was a “lost opportunity” for providers. He further described how diet, exercise, and sleep were his primary means of maintaining a high HRQOL. He would like to see these aspects of health and QOL integrated more into overall MS care from all providers. Other participants described a feeling of uncertainty in proceeding with exercise or nutritional changes to support their MS due to lack of knowledge. Despite this uncertainty about implementing lifestyle changes, the participants all seemed to coalesce around the idea that diet and exercise can facilitate improved HRQOL with MS.

Five of the fifteen participants characterized the facility they access as a comprehensive MS center. These individuals discussed their center’s additional services, including physical therapy, education classes, counseling, and support groups, as valuable to their overall healthcare and QOL. Participants voiced the benefits of having a broader approach to their MS and cited the ease of communicating with the care team as instrumental in staying healthy. In contrast, a participant outside this group of five stated, “I feel that I am not getting support from the healthcare providers.” He explained that he needed more than just biannual visits and pharmacological management.

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