Developing and Piloting a Dedicated Support Group for Young Adults With Multiple Sclerosis Free

Nearly 1 million people live with multiple sclerosis (MS) in the United States.¹  MS is one of the most common chronic neurological diseases that causes disability in young adults (YAs); it is diagnosed most often between the ages of 20 and 40.^2,3  It can also start in childhood and adolescence; however, pediatric MS is relatively rare. Only 3% to 5% of individuals experience disease onset before age 16. Fewer than 5000 children and teens (ie, under the age of 18) have been diagnosed with MS in the United States and worldwide, that number is fewer than 10,000.⁴ 

YAs diagnosed with MS face an overwhelming number of questions about the disease. Gajofatto et al²  point out that the first years after being diagnosed with MS are difficult for individuals and can negatively affect their psychological well-being, quality of life, and social functioning. Members of this MS group must also face the transition from adolescence to adulthood and the many changes during that epoch of life. Yüksel Yilmaz et al⁵  point out that it can be challenging for adolescents to navigate developmental transitions and achieve medical and personal independence. YAs with MS must also transfer their care from pediatric to adult providers and facilities. There is limited research on the topic of continuity of care in pediatric patients with neuroimmune disorders transferring to adult care.⁶  The health care models differ greatly between these 2 entities. While the pediatric care model is family oriented with strong parental participation in decision-making, the adult care model is patient specific and relies on the patient's autonomous, independent skills.⁷  Thoby et al⁸  explored the experience and perceptions of the quality of life of adolescents with MS and health care–related transitions. They found that autonomy in health care management, adequate control of symptoms, and sufficient support impacted YA's perceptions of quality of life.

YAs who are diagnosed and receive care at the Children's Hospital of Philadelphia (CHOP) will often transition to adult care at the University of Pennsylvania (Penn) MS and Related Disorders Center due to the close proximity of the facilities and close collaboration between the pediatric and adult teams. However, YAs diagnosed with MS at age 18 or older would receive that diagnosis and early care in the adult-care setting. These patients may not get the close follow-up and support they would have received if they had been diagnosed in the pediatric setting.

Lack of information and support can affect YA patients and ultimately lead to negative outcomes. Social support plays a significant role in coping with a chronic disease such as MS.³  Participation in a support group is one way to obtain information about MS and receive peer support from others living with the same diagnosis. A support group is defined as “a group of people with common experiences and concerns who provide emotional and moral support for one another.”⁹  In one study, researchers found that a dedicated support group for patients with new diagnoses of MS can offer support, serve as a source of information about MS, and ultimately may improve their perception of how MS may affect their lives.¹⁰ 

The COVID-19 pandemic forced many people to move interactive meetings to a virtual platform, presenting the opportunity to obtain social support online. The results of one study suggested that a virtual wellness program for patients with MS provided beneficial emotional support, physical exercise, and health promotion activities, resulting in improved quality of life.¹¹  Another study involving online social support for people with MS suggested that participation in a virtual support community could benefit members by sharing personal experiences, social support, coping strategies, and spiritual support.¹²  Online peer support can reduce the risk of loneliness and isolation through communication with other people, including learning from others and sharing coping strategies.¹³  Given the pandemic and the need for support for YAs with MS, the researchers decided to conduct a virtual support group.

This qualitative descriptive pilot study explores the feasibility and outcomes of a virtual support group for YAs with MS being cared for in an adult MS center. The study aims to develop and pilot a dedicated support group for YAs with MS.

The purposive convenience sample consisted of YAs with MS from the Penn MS and Related Disorders Center. The study was reviewed by the University of Pennsylvania Institutional Review Board (IRB) and received exempt status, which means the study qualified as human research with minimal risk. The consent document was approved by the IRB and provided an explanation of the study, including risks and benefits to the participants. The research team included a social worker (N.S.), a social work intern (H.G.), and a nurse (V.Z.).

Over a 2-month recruitment process, patients with MS between the ages of 18 and 29 were recruited via provider referral. Flyers were also posted in the MS clinic. No financial incentives or compensation were provided for participation. Potential participants who fit the inclusion criteria were sent an invitation from the nurse or social worker via secure email and the consent form for review. Patients who decided to enroll in the study contacted the researchers via phone or email. For the consent process, an opportunity was provided via phone for review of the consent, as well as questions and answers, and signing was completed electronically. A copy of the consent with both participant and researcher signatures was sent back to the participant via secure email.

The program was designed to gain information about the needs of patients who transferred from a pediatric setting to Penn for MS care. Based on previous research, a dedicated support group can be effective in providing support and information. The program was developed by the research team with input from 2 neurologists, one specializing in adult MS care and the other in pediatric MS care transitioning to adult care, as well as the nurse manager. The team met weekly.

People who enrolled in the study were asked to complete a demographic sheet. They also completed a preprogram questionnaire prior to the first session. The questions addressed the transfer from pediatric to adult care, managing MS care, coping with MS, and the idea of a dedicated support group (TABLE S1). The completed questionnaires were sent electronically via secure email. The preprogram questionnaire information was used to inform the development of the program topics.

The sessions were presented virtually via Microsoft Teams, with the link sent via secure email. There were a total of 6 one-hour sessions, and the topics and structure of those sessions were determined by the preprogram questionnaires. The 3 researchers conducted all sessions.

After the 6 sessions, participants were asked to complete the postprogram questionnaire. These questions addressed whether the participants felt differently about their MS management following the sessions: Were they coping better with MS? Were the meeting topics helpful? Was it beneficial to have the opportunity to interact with other people in their own age bracket with MS (Table S1)?

We opted for a qualitative descriptive design, owing to the phenomenological nature of our study in a health-care setting.¹⁴  Theme development is the basis of qualitative descriptive research and an appropriate approach to answer the study question.¹⁵  The data, consisting of the answers that participants provided to the questionnaires both before and after the program, were analyzed using thematic analysis. The researchers manually reviewed the data by coding, sifting, and sorting to identify themes. This theme discernment process enabled the researchers to answer their question of whether the dedicated support group they implemented was beneficial to this group of YAs with MS.

A total of 18 patients were invited to participate in the study; 8 accepted and were enrolled. All the participants were female. Six of the participants had MS diagnoses. One participant had a diagnosis of clinically isolated syndrome and one had a diagnosis of radiologically isolated syndrome, both considered prodromal to MS. The group demographics are presented in TABLE S2.

Five group members were very active in the program and attended between 3 and 6 sessions. Two of the participants attended only 1 program, and 1 participant never attended. These 3 participants did not complete the postprogram questionnaire and, thus, were not included in the postprogram analysis. However, their responses on the preprogram questionnaires were included in determining the preprogram themes.

The researchers used the preprogram questionnaires for program development. The participants suggested a variety of topics. From this information, researchers selected 4 themes: transition from pediatric to adult care, support, coping, and the need for more information about MS.

The transition from pediatric to adult care can be difficult for YAs. One participant reported it was not the experience she expected: “There needs to be a better conversation about what it means to transition from pediatric care to adult care. I was given all the numbers and names for people, but it wasn't explained to me what I should be going to them for” (age 23; MS duration, 9 years).

Support is an important factor for all individuals with MS, but especially for YAs. One participant noted, “If I had a bad day, I [would] get so frustrated and cry and ask myself why I have to be the one dealing with this” (age 23; MS duration 4 years). Another participant stated that the group meetings involve “networking with other MS patients” (age 24; MS duration, 3 years).

Group interaction was also high on the desired request list. The participants wanted some of the sessions to provide time for them to simply interact with each other. One participant said she wanted “just a place to meet and talk with people who are going through similar things as me” (age 18; MS duration, 1 year). Additionally, all 8 participants asked to have their support person(s) invited to attend at least 1 of the sessions.

Coping can be very difficult for YAs with MS. One participant related, “I genuinely don't know how to cope…. I feel like I try my hardest, but I don't know how. No one in my family has MS or anything like that…so no one understands” (age 25; MS duration, 2 years). Another said, “It seems like the longer I have it, the harder it is to cope with knowing there is no end to it” (age 24; MS duration, 3 years). A third said, “I want [to hear] positive stories or positive developments [about] people who have MS” (age 20; MS duration, 1 year).

Participants particularly wanted more information about MS. One individual said she was interested in “symptom myths and facts about MS” (age 24; MS duration, 3 years).

The social worker, the social work intern, and the nurse served as facilitators for all 6 sessions. Topics covered ranged from an explanation of MS to treatment/management to interacting with others with MS in their own age bracket. One session included a discussion with 2 individuals with longer disease durations. A review of all the sessions is presented in TABLE 1.

Following the final session, 5 participants completed the postprogram questionnaire and all reported that they felt significant benefits from attending the support group sessions. Four key themes were identified from these postgroup questionaries, including suggestions for a smooth transfer from pediatric to adult care, the benefit of support and/or feeling less alone, coping strategies, and increased knowledge about MS.

Overall, the participants had positive comments about the transfer from pediatric care to adult care. However, they did offer suggestions for improvements. During the transition, some felt confused about which provider is responsible for their care. One individual stated, “I am unsure who I am supposed to call about any issues I am having. Being in between doctors has been confusing. I would just recommend being more clear about whose care they are under during the transition” (age 18; MS duration, 1 year).

Communication is of utmost importance. Transferring to another facility can be confusing, and people with MS need routine testing such as bloodwork and MRIs. One participant suggested, “Just be sure to relate what tests are to be done during the transfer and where to go” (age 24; MS duration, 3 years).

YAs may need additional follow-up support. One participant stated, “After my first infusions, I don't remember anyone reaching out to follow up about how they went until I had a follow-up appointment. I feel like some more support in that way could be better” (age 20; MS duration, 1 year).

“Young adults need to know they are not alone” (age 22; MS duration, 2 years). This topic was brought up many times during the sessions and there were numerous positive comments on the final questionnaires. One participant revealed, “The group has helped me to feel less alone in my MS” (age 20; MS duration, 1 year). Regarding the question of whether it was helpful to talk with people with MS their own age, one participant exclaimed, “Yes! Yes! Yes! Just the ability to relate to each other has been so nice” (age 23; MS duration, 9 years). Another participant also expressed that need for companionship: “I feel like my MS care has been better since this group. I feel more connected and ‘normalized’ being with others who are experiencing their 20s in the same way. This group was the first time I was able to meet people in my age group [who] have MS” (age 24; MS duration, 3 years).

Participants felt that the people in the group understood each other. One stated, “I feel less of a burden [from h]earing others’ opinion on how to deal with others who don't understand how I am actually feeling” (age 25; MS duration, 2 years). Another participant revealed that the group discussions provided valuable support, saying, “It helped me see people could be healthy with MS at my age, to learn we have similar struggles, and to see others doing really well. It gives more hope for the future and makes me feel like I can talk about things people without MS wouldn't understand” (age 20; MS duration, 1 year).

As requested on the preprogram questionnaire, the participants had their support person(s) join session 5. There was consistent positive feedback about that program. One participant noted, “The session where support persons attended helped my support people (mom and sister) feel comfortable knowing and actually seeing people my age who have MS, too. It made me feel more comfortable talking and sharing with my mom and sister about the different MS-related items we discussed during our meetings” (age 23; MS duration, 6 years).

Participants learned how to cope with MS. Some participants said that attending the sessions helped them cope and contributed to them “feeling less alone.” “I don't feel lonely coping with living with MS after participation in this group. It was nice to hear the members’ various ways of coping with MS” (age 23; MS duration, 4 years). The group interaction enabled the participants to feel like others were experiencing the same issues, which helped them to cope with this disease. One participant said, “I have been coping better since this group. Hearing everyone's experiences [that] are so similar to mine, such as relationships, coping, etc, makes me feel [much] more normalized and connected” (age 24; MS duration, 3 years).

One participant established an online group chat for anyone interested in talking or who needed additional support. Anyone who wanted to join could participate. Chat-group members liked having that connection between their regularly scheduled monthly sessions. One participant commented, “Our group chat has been especially comforting whenever we have MRIs or just need a feel-good puppy picture to get us through our not-so-great MS days” (age 23; MS duration, 6 years).

One of the main goals of these sessions was to provide knowledge about MS. The feedback from the program participants showed evidence of greater understanding and positive benefits.

The importance of adhering to MS therapy was discussed. One participant stated, “One topic that helped me was learning about certain meds. I'm always afraid of what I put in my body, so learning about the importance of taking the proper meds actually helped me more than I thought” (age 25; MS duration, 2 years). When answering the question of how participation in the group changed how she was managing her MS, one participant replied, “Good, since I switched medications. The group has helped me to learn about other experiences with different medications” (age 20; MS duration, 1 year).

The sessions provided a comfortable environment to discuss such issues as pregnancy and family planning. One participant stated, “I appreciated the session on relationships [and] family planning—it has been on my mind for the future, but I felt awkward asking or talking with my neurologist about it” (age 23; MS duration, 6 years).

The question of work disclosure was raised, which led to a discussion with the social workers about approaches to disclosing an MS diagnosis at work. The participants appreciated this topic, and one stated, “I always wondered how to bring up my diagnosis with an employer and hearing others’ experiences on how they addressed it with their employer was really helpful” (age 24; MS duration, 3 years).

This study determined that YAs with MS found a structured, regularly scheduled virtual support meeting with other YAs with MS was beneficial. Interactions with people in the same age group helped them understand what they were experiencing and that they shared similar feelings about dealing with MS and issues with their care.

Several participants felt that their transfer from pediatric care to adult care went well. However, a few felt it was not a smooth process, and they offered feedback on how to improve the transition. As Narula pointed out, it is important that the transfer of care be structured to ensure continuity of care and treatment.⁶  Those who believed the process was not smooth stressed the need to communicate with pediatric patients to ease the transfer process, including which provider will lead their care team during the transition. Additionally, medications for MS treatment can be complex. Transferring from one facility to another may require a new contact person, reestablishing insurance information, a new contact for scheduling, and, for those on infusion therapy, a new location for infusions. This group's conversations suggested that YAs with MS may need additional support with these issues. They should have a key point of contact to provide information on medication, testing, visits, and locations for all necessary care.

The need for social support was a key item that participants listed in the preprogram questionnaire, and many believed they benefited from the social interaction in this program. Other researchers have also found that YAs with MS, including those with new diagnoses, benefit from social support.^8,10  One person felt that discussing issues within the group made it easier to talk about her MS outside the group. Discussion with others informed participants that there could be other approaches to managing their MS. For example, one person believed she could not change her MS medication. However, when she listened to others who had better results from using other medications, it encouraged her to talk with her neurologist about alternative treatments. The experiences of others enabled her to be more comfortable bringing up the issue with her provider.

An unexpected successful outcome of this study is that it enabled the participants to set up their own support group, an online group chat. Such an action on the part of YAs with MS was not found in the literature, and there is little information about patient-led support groups among MS patients. One patient-led chronic pain support study suggested that coproduced peer support groups could provide low-cost, effective social intervention, resulting in emotional and social benefits, improved self-management skills, and stronger social connections.¹⁶  The participants in our study said that they liked having the group chat connection between the regular monthly group meetings. They found the extra support very helpful, especially on those “not-so-great” MS days.

The study group meetings also benefited the participants’ support people who were invited to attend 1 session. Several of them said that they had never met another YA with MS and that experience was beneficial. When supporting YAs with MS, one must consider parents, siblings, and partners and their need for information. YAs with medical complexity, as well as their families, need effective reciprocal interactions with others to make the transition to adulthood successfully.¹⁷  Based on these findings, providers should consider offering programs and information that include the support person(s) of the YA with MS.

Coping with a chronic disease requires social support. Some participants in this study related having difficulty coping with their diagnosis, but after participation in this group, one participant related that she no longer felt lonely when coping with her MS. Other research studies have suggested that online support provides an opportunity to learn from others and to share coping strategies.^12,13 

The feeling of being alone was very marked for participants, and the support group offered a positive setting that helped them feel less isolated. They specifically asked for time together to talk and share their experiences. The program also helped them feel like less of a burden to others, such as family. Sharing a session with their support people provided an opportunity for them to learn more about living with MS. The participant-initiated group chat further met their desire for and benefit from social support.

The preprogram questionnaire identified information about MS as a key issue. Other studies have confirmed that YAs with MS want more information about the disease and its course.^10,12  The session presented by the nurse practitioner covered several requested topics, including MS treatment, pregnancy, and cognitive issues.

Treatment for MS is imperative for positive outcomes. The literature shows that individuals who start therapy early have significantly lower productivity losses and early intervention is paramount to stop MS progression.¹⁸  All the participants diagnosed with MS were on disease-modifying therapy. In the session conducted by the pharmacist, she provided information on all the current MS therapies. The nurse practitioner provided information on the importance of adherence to their MS treatment and both presenters addressed questions.

YAs with MS often have concerns about whether they can get pregnant and start a family. Research data show that most women with MS can safely become pregnant, give birth, and breastfeed their children.¹⁹  This support-group setting provided an ideal place for the nurse practitioner to present information about pregnancy and MS.

Two participants did report cognitive issues. Cognitive dysfunction is a core symptom of MS.²⁰  For a YA, it can be frightening to experience memory loss. Receiving information and being able to have this discussion within a support group can be beneficial. If others are having similar issues, individuals with MS may find that they are not alone and may gain more of an understanding about what is happening to them.

The results of this study align with those of previous studies, which show that online support groups can provide beneficial emotional, social, and spiritual support^10–12  as well as coping strategies.^3,12,13  We could not find studies where people with MS started their own patient-led support group as the participants did in this study. The researchers could conduct a future study to determine the long-term effects of this patient-led intervention.

This support group met many of the needs participants expressed. The virtual support group proved to be both convenient and effective. This core group of 5 YAs took full advantage of every opportunity presented to learn more about MS and how to manage it. Those who had difficulties with the transfer of care process provided suggestions for improvement. The sessions provided a positive environment for support, interaction, and knowledge about MS. All participants reported that they have adjusted to the adult-care setting. The results of this study will pave the way for the researchers to conduct a larger study with YAs with MS.

This study had several limitations. All 8 participants completed high school, and 6 had education beyond high school. Therefore, the findings may not be applicable to individuals with a lower education level. A written survey was used for data collection, limiting the participant pool to people able to read and write in English. In future studies, an interview method could be considered. Given the small sample size, the findings cannot be generalized to a larger population. Additionally, the study was conducted in a large metropolitan area where more resources are available, including a large pediatric facility, a large MS center with neurologists specializing in MS, and ample support services. Therefore, these conclusions may not apply to YAs with MS in more rural areas with more limited resources. It is also worth mentioning that 5 of the 8 participants had transferred from CHOP to Penn for their MS care. They related that in the pediatric setting, participation in research studies was frequently offered. That factor may have contributed to their willingness to participate in this study.

Finally, because 2 participants attended only 1 session and 1 participant only filled out the initial questionnaire but did not attend any sessions, 38% of the group did not complete the intervention. Future research that includes a larger sample of YAs with MS is needed. An additional research idea is to use this group for long-term follow-up. The researchers could evaluate whether there are differences between those who continued the support group meetings and those who did not.

The results of this pilot study suggest that a virtual, dedicated YA MS support group may provide educational and psychosocial benefits. It created an environment where participants gained information, felt supported, and ultimately achieved the goal of feeling less alone via interactions with others of a similar age who were also living with MS. Our team aimed to empower our young patients through what is typically a challenging time: becoming adults with the primary responsibility of overseeing their own medical care and advocating for themselves. The participant who had lived with MS the longest (age 23; MS duration, 9 years) gets the last word: “PLEASE KEEP THIS GROUP GOING!!!”

Special recognition is given to the Board of Women Visitors at the Hospital of the University of Pennsylvania for grant funding to support this initiative and to Meghan Garabedian, MSN, RN, CRNP, MSCN, and Kerry Lenzi, PharmD, for their session presentations.