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Experiences of Word-Finding Difficulties in Multiple Sclerosis: A Qualitative Interview Study

Multiple sclerosis (MS) typically presents in young adulthood. Recent data show the highest prevalence of MS in people aged 55 to 64 years; however, there are limited studies of this population.

 Administrative US claims data from IBM-Truven MarketScan commercial and Medicare databases (2011–2017) were analyzed. People with MS 50 years or older were assigned to the aging MS cohort (n = 10,746). The matched controls were people 50 years or older without MS (n = 10,746). Multivariable models compared outcomes between groups.

Infections were more frequent in the aging MS cohort vs matched controls (61% vs 45%; 

 < .0001); urinary tract, acute upper respiratory tract, and herpes zoster were the most frequent infection types. Malignancy rates were 20% for both groups (

 = .8167); skin, breast, and prostate malignancies were the most frequent types. Skilled nursing facilities (aging MS cohort, 12%; matched controls, 3%; 

 < .0001) and MRI (aging MS cohort, 87%; matched controls, 37%; 

 < .0001) were used more frequently in the aging MS cohort; brain and spine were the most frequent types of MRI in the aging MS cohort. Time to first cane/walker or wheelchair use was shorter in the aging MS cohort (cane/walker use: HR, 2.1; 95% CI, 1.9–2.3; 

 < .0001; wheelchair use: HR, 6.9; 95% CI, 6.0–8.1; 

In people 50 years or older, measures typically associated with worse health primarily resulted from having MS rather than being a consequence of aging alone.

From the Department of Neurology, Dell Medical School, The University of Texas at Austin, Austin, TX, USA (LF, AL); EMD Serono, Rockland, MA, USA (JZ, BH, TL); and Ashfield MedComms, an Ashfield Health company, Macclesfield, United Kingdom (MG). 

Leorah Freeman, MD, PhD, Department of Neurology, Dell Medical School, The University of Texas at Austin, 1601 Trinity St, Bldg B, Stop Z0700, Austin, TX 78712, USA; 

Editorial support for the preparation of this manuscript was provided by Nick White of Ashfield MedComms, an Inizio company (New York, NY, USA); funding was provided by the study sponsor.

 Funding for this research was provided by EMD Serono, (CrossRef Funder ID: 10.13039/100004755) through the Multiple Sclerosis Leadership and Innovation Network, a scientific consortium created to advance MS science by generating actionable real-world data and patient-centered solutions to improve patient outcomes. The authors had full control of the manuscript and provided their final approval of all content.

 Leorah Freeman, MD, has served as an advisor/consultant for Genentech, Novartis, Celgene/Bristol Myers Squibb, EMD Serono, and TG Therapeutics; has received program sponsorship from EMD Serono, and Celgene/Bristol Myers Squibb; and has received research support from the National Institutes of Health/National Institute of Neurological Disorders and Stroke, the Patient-Centered Outcomes Research Institute, Genentech, EMD Serono, and Celgene/Bristol Myers Squibb. Ashlea Lucas, PA-C, has served on the advisory boards of Viela Bioa and Celgene/Bristol Myers Squibb. Jia Zhou, MS, was employed by EMD Serono, Rockland, MA, USA, at the time of manuscript development. Mallory Gough, PhD, was employed by Ashfield MedComms, an Ashfield Health company, at the time of manuscript development. Brooke Hayward, SM, MBA, and Terrie Livingston, PharmD, are employees of EMD Serono, Rockland, MA, USA.

 This article was developed based on a poster presented at the Americas Committee for Treatment and Research in Multiple Sclerosis–European Committee for Treatment and Research in Multiple Sclerosis virtual meeting; 2020.

Multiple sclerosis (MS) is an inflammatory and degenerative disease of the central nervous system typically presenting in young adulthood (mean age at onset of approximately 34 years)

; however, the prevalence of MS in older people is increasing,

 with recent US data estimating the highest prevalence in 55- to 64-year-olds.

 This increased prevalence is most likely due to increased life expectancy in people with MS, which, in turn, has been attributed to the development of effective disease-modifying therapies (DMTs), earlier diagnosis of MS, and increased overall life expectancy in the general population.

It is not fully known how age-related changes in the immune system (immunosenescence and inflammaging) affect the MS disease process.

 In addition, clinical trials typically exclude older people, who often experience age-related comorbidities, longer disease duration, and accumulated disability.

 Previous studies have found that people with MS have an increased risk of infection compared with the general population, potentially as a consequence of MS disease or due to treatment with DMTs that interfere with the immune response.

 In addition, some cancers may have a higher incidence in people with MS than in people without MS, possibly related to altered immune responses, inflammation, physical inactivity, or comorbidities that can increase the risk of cancer.

 Furthermore, rates of infection and malignancy have been found to increase with age.

 Understanding clinical characteristics, outcomes, and health care service use in older people with MS represents an important step in improving disease management and care in this population.

In this real-world study, we assessed infections and malignancies, use of skilled nursing facilities (SNFs), use of MRI, and mobility impairment in people 50 years or older, both with and without MS, to investigate whether health-related events were primarily associated with MS or with aging itself.

This was a real-world, retrospective, longitudinal, observational analysis of administrative US claims data obtained from IBM-Truven MarketScan commercial and Medicare databases during the study period of 2011 to 2017. These databases contain health care claims data, deidentified to maintain Health Insurance Portability and Accountability Act compliance, from more than 60 million individuals across the US compiled from approximately 100 different payers (ie, entities that pay healthcare providers for the services they administer: commercial, private, and government-funded insurance providers). Approval of this research by an independent ethics committee or an institutional review board was not required because the study involved only secondary use of deidentified data.

People were eligible for inclusion in the MS group if they had at least 3 MS diagnosis claims (

International Classification of Diseases [ICD]-9

 code G35) within 1 year, or at least 1 MS diagnosis claim and at least 1 DMT claim within 1 year. The index date was the first MS diagnosis or DMT claim in 2012. The types of DMTs included in this study were the US Food and Drug Administration (FDA)–approved DMTs available during the study period and include self-injectable (ie, interferon beta-1a, interferon beta-1b, glatiramer acetate, and peginterferon beta-1a), infusion (ie, natalizumab, alemtuzumab, and ocrelizumab), and oral (ie, teriflunomide, fingolimod, and dimethyl fumarate) medications. Use of DMT was assessed through National Drug Code numbers for FDA-approved DMTs for MS available during the study period.

Continuous enrollment from 1 year pre-index (baseline) to at least 3 years postindex (follow-up) was required. People were eligible for inclusion in the general population group if they were continuously enrolled from 2011 to at least 2015 and had no previous documented diagnosis of MS; July 1, 2012 was used as the index date. For the primary analysis, eligible participants who were 50 years or older in 2012 were assigned to the aging MS cohort if they had MS and to the general population group if they had never been diagnosed as having MS. A subset of the general population group was then matched in a 1:1 ratio to the aging MS cohort using propensity scores calculated from a logistic regression model including baseline covariates (age, sex, region, health plan, comorbidities) and a greedy 5- to 1-digit matching algorithm without replacement to generate a group of matched controls.

 The general population group was sufficiently large such that matches were found for each member of the aging MS cohort. To examine how MRI use changed with age, eligible matched pairs (ie, 1 aging MS cohort and 1 control cohort) were subsequently grouped into the following age groups: 50 to 59, 60 to 69, and 70 years or older.

Primary outcomes included the proportion of people with infections and malignancies and the proportion of people using SNFs or MRI between the study and control groups. The annualized rate of infections per person, the most frequent infections, and the infections of interest were recorded. Data on the most frequently reported malignancies and types of MRI performed were also obtained. Association between age group and MRI use was also examined. Secondary outcomes included time to cane/walker use and time to wheelchair use in both groups.

Patient baseline demographic and clinical characteristics were evaluated. A propensity score matching algorithm was used to minimize selection bias and balance the aging MS cohort and the control group. Improvement in balance between cohorts after propensity score matching was assessed for each baseline characteristic using standardized mean differences with a threshold of 0.1 or less. Multivariable models were used to compare risk of infection, malignancy, SNF use, MRI use, and cane/walker or wheelchair use between the groups, adjusting for baseline covariates on age, sex, region, health plan types, and Charlson-Quan Comorbidity Index score.

 Odds ratios were estimated from logistic regression models; rate and rate ratios were estimated from generalized linear models; and risk of use of mobility aids (cane/walker or wheelchair) was estimated from Cox proportional hazards models, which included adjustment for cane/walker or wheelchair use at baseline. The 

 values were calculated using the Wald χ

 test; a critical value of 0.05 was specified as the threshold for statistical significance. The CIs were Wald 95% confidence limits. Analyses of infection, malignancy, and SNF and MRI rates were conducted using data from the follow-up period between 2012 and 2017.

The proprietary database used for this study was made available to EMD Serono through a license that limits dissemination of the database. Statistical coding used to conduct the analyses is proprietary and, as such, has not been made available.

Details of the population selected for the aging MS cohort and the general population group are shown in 

. Overall, 10,746 people with MS were included in the aging MS cohort, and 3,521,326 people were eligible for inclusion in the general population group (Figure 1). Subsequently, 10,746 pairs were matched between the aging MS cohort and the general population group using propensity scores, which ensured that baseline characteristics were similar between groups (

, available in as a PDF at the end of this article). The mean ± SD follow-up time for this analysis was 5.1 ± 0.8 years in the aging MS cohort and 5.0 ± 0.7 years in the control group.

In people 50 years or older, infections occurred in more people with MS (aging MS cohort, 61%; controls, 45%; 

). Furthermore, the mean annualized infection rate was 3 times greater in the aging MS cohort (0.74 per person per year; 95% CI, 0.69–0.79) than in the control group (0.25 per person per year; 95% CI, 0.23–0.26) (rate ratio, 3.0; 95% CI, 2.8–3.1; 

 < .0001). The 3 most common infections in the aging MS cohort and the matched control group were urinary tract infections (40% and 19%; 

 < .0001), acute upper respiratory tract infections (25% and 24%; 

 = .7154), and herpes zoster infections (9% and 5%; 

 < .0001). Incidences of additional infections of interest were low in the aging MS cohort and matched controls (progressive multifocal leukoencephalopathy, <1% and 0%; pneumonia, <1% and <1%). The proportion of people 50 years or older who developed a malignancy was identical between both groups (20%; 

 = .8167) (Figure 2). Malignancy rates were also similar in the aging MS cohort vs matched controls when individually evaluating skin (8% vs 7%), breast (4% vs 5%), and prostate (2% vs 2%) cancers, the 3 most common malignancies reported in this data set.

In people 50 years or older, SNFs were used by 4 times as many people in the aging MS cohort vs the control group (12% vs 3%; 

 < .0001) (Figure 2). In addition, MRI was used by more than double the proportion of people with MS (aging MS cohort, 87%; matched controls, 37%; 

 < .0001) (Figure 2). The difference in MRI use between the cohorts remained significant when evaluating people aged 50 to 59 years (aging MS cohort, 90%; controls, 35%; 

 < .0001) and 60 to 69 years (aging MS cohort, 84%; controls, 40%; 

 < .0001) but not when evaluating people 70 years or older (aging MS cohort, 68%; controls, 44%; 

 = .8380). People with MS 50 years or older most frequently underwent brain (82%) and spine (62%) MRI.

Time to first cane/walker or wheelchair use was shorter in people 50 years or older with MS than in those without MS (cane/walker use: HR, 2.1; 95% CI, 1.9–2.3; 

The analysis of US administrative claims data from more than 20,000 people found that infections and health care use related to SNFs and MRI were more common and mobility aids were used sooner in people with MS 50 years or older than in people 50 years or older without MS. The present findings suggest that measures typically associated with worse health were primarily associated with having MS rather than being a consequence of aging alone.

Analysis of the IBM-Truven MarketScan commercial and Medicare databases between 2011 and 2017 identified 10,746 people with MS 50 years or older. Consistent with other analyses, the large number of older people with MS identified in these US databases alone demonstrates that although MS typically presents in young adulthood,

 there are many people with MS 50 years or older who will require care tailored to their specific needs.

 For example, the risk-benefit ratio of a given DMT may change in older people as the risk of adverse events may increase.

 In addition, data suggest that signs of immunosenescence, such as decreased thymic output of naive T cells and increased infection rates, begin at age 50 years, factors that are unique to this population and highlight the value of characterizing MS in older people.

In the present study, we found that infections were more frequent in the aging MS cohort than in the control group, suggesting that having MS may increase the likelihood of infection in older people. A previous study of data from Swedish national registers found that people with MS had a 2.5 times increased risk of a serious infection and a 1.6 times increased risk of a nonserious infection than people without MS.

 An additional study of data from electronic medical databases found that people with MS were 1.8 times more likely to have any infection in the United States and 1.3 times more likely in the United Kingdom, with a 2.0- to 2.4-fold higher rate of hospitalized infections in people with MS than in the general population.

 The increased risk of infection in people with MS might be related to the functional limitations related to long disease duration and advanced disability, such as neurogenic bladder and dysphagia.

 Furthermore, reviews of data from clinical trials, the overall MS population, and administrative claims databases have found that the risk of infections may increase with age.

 This is particularly relevant in light of the current COVID-19 pandemic because increased age is also a risk factor for worse outcomes with SARSCoV2 infection.

The higher rate of infections in people with MS in the present study was primarily driven by urinary tract and herpes zoster infections. These results are consistent with previous findings that these 2 infections are more common in people with MS than in those without MS and that bladder dysfunction and reactivation of the herpes simplex virus increase with increasing age in MS.

 Specifically, incidences of urinary tract or kidney infections have been found to be nearly 2-fold higher, and incidences of opportunistic infection, candidiasis, and any herpes virus are 20% to 52% higher in people with MS compared with non-MS patients.

 The likely explanation for the higher rate of urinary tract infections is the higher prevalence of urinary disorders and bladder dysfunction in people with MS and is not necessarily due to treatment with DMTs.

 At the time of data collection, the only available herpes zoster vaccine contained a live attenuated virus and, thus, although recommended for adults 60 years or older, was not suitable for people with MS

; however, a recombinant herpes zoster vaccine is now approved and recommended for immunocompetent adults 50 years or older, including people with MS.

 Considering the current COVID-19 pandemic, it is reassuring that this analysis showed that acute respiratory tract infections and pneumonia occurred in similar proportions of people in both cohorts. Overall, the present findings suggest that clinicians should be vigilant in monitoring older people with MS for potential infections. This is consistent with recent recommendations that suggest that clinicians should review vaccination status and screen for infection at MS diagnosis and that before initiating a new DMT, potential infection risk should be evaluated with a view to mitigating any risk.

 Appropriate testing and strict monitoring of clinical signs and symptoms should be conducted throughout the MS disease course to ensure early diagnosis and prompt initiation of treatment.

In general, the risk of malignancy increases with age, with two-thirds of all cancer cases diagnosed in people 50 years or older.

 Studies in people with MS have also suggested that risk of malignancy may increase with age in this population.

 Analyses of the incidence of malignancies in people with MS compared with the general population has shown conflicting results. Most studies have found that the overall risk of malignancy is generally lower in people with MS than in the general population, with other studies identifying no difference between cohorts

; however, other studies have suggested that the risk of certain malignancies (eg, respiratory, urinary, central nervous system) may be higher in people with MS than in people without MS.

 This increased rate of malignancies in people with MS could be related to genetic or environmental factors (eg, smoking, chronic bladder and kidney irritation due to micturition problems and urinary infections, chronic neurologic inflammation) or may be a consequence of frequent MRI (eg, of the central nervous system).

The present analysis identified no overall difference in diagnosis of malignancy between people with MS and the general population, as well as for the 3 most commonly reported malignancies in the data set: skin, breast, and prostate. These findings echo the results of another recent retrospective matched cohort study that evaluated population-based administrative data in Canada.

 found that although incidences of breast and colorectal cancers increased with age, rates did not differ between people with or without MS in any age group.

Although the present results support most of the recent data in the literature in suggesting no difference in the incidence of malignancies between people with and without MS, it is still important to monitor people with MS for malignancies because they may experience numerous barriers to screening. Multiple sclerosis may cause severe disability that limits access to preventive care such as cancer screenings, which could delay cancer diagnosis.

 Barriers to screening often include issues related to mobility impairment, such as transportation or lack of adaptive equipment within the health care setting.

 Additional barriers include those related to providers, such as negative attitudes and lack of referrals, and personal barriers, such as fear, discomfort, and “having enough to handle.”

In addition to infection and malignancy, we also evaluated mobility aid and SNF use in older people with MS to interrogate whether they were related to MS or to aging and its comorbidities. The present data demonstrated that people in the aging MS cohort were quicker to require a cane/walker or a wheelchair than matched controls. Similarly, more people in the aging MS cohort used SNFs than in the control group. The earlier use of mobility aids and the higher use of SNFs in older people with MS suggest that disability is due to MS and not merely due to aging and the associated comorbidities and highlights the need to further investigate optimal treatment strategies for this patient population; individualized assessment of treatment risk-benefit profiles will be paramount.

MRI is used to monitor disease progression and response to DMTs in people with MS. Thus, it was not unexpected that MRI was used more frequently by people with MS, or that the brain and spine were the most frequent types of MRI. However, in people 70 years or older, the proportion using MRI was no longer significantly different between people with MS and the control group. This seemed to be a result of MRI use declining with increasing age in people with MS and increasing with increasing age in matched controls. These data suggest that disease monitoring reduces as people with MS get older, possibly due to the discontinuation of DMT.

 Reduced disease monitoring results in a reduced understanding of the disease pathophysiology in this oldest subset of people with MS, potentially reducing the opportunity to predict therapeutic responses and improve prognosis in this population.

A limitation of the present analysis is the evaluation of people with MS as a single group; due to a lack of information available in the databases, the effects of certain factors were not studied (ie, race/ethnicity, socioeconomic status, mental health status, or geographic location), all of which could influence outcomes and health care use. Similarly, we were unable to consider differences in health behaviors (ie, smoking, diet, physical activity) between the aging MS cohort and the control group, or the effect of different MS disease courses (eg, relapsing-remitting vs secondary progressive). One further limitation of claims analyses in general is that the presence of a diagnosis code on a medical claim does not guarantee the presence of disease because the diagnosis code may have been incorrectly coded or included as rule-out criteria. In addition, the initial diagnosis or claim may have happened before the patient was captured in the system, which could lead to a shorter disease duration or the incorrect categorization of patient disability stage. Finally, given the large sample size, statistically significant differences between groups should be interpreted with caution, with a focus on clinically meaningful differences.

Despite these limitations, we believe that the present analysis of more than 10,000 Americans with MS is a valuable initial contribution to the pool of knowledge available on the differential effects of MS and age on individual outcomes and health care use. Indeed, the present analysis of administrative US claims data from the IBM-Truven MarketScan commercial and Medicare databases between 2011 and 2017 identified 259,773 people with MS overall, representing a substantial proportion (approximately 35%) of the adult MS population in the United States according to recent estimates.

For the scope of this article, we conducted a retrospective analysis of administrative claims data on people with and without MS 50 years and older that focused on a few key areas (infections and malignancies, health care service use, and mobility impairment); however, more data and future studies are needed to assess the long-term consequences of living with MS and the use of DMTs in older adults. Comorbidities, sedentary lifestyle, obesity, and frequent medication use are all common in people with MS

 and are likely to have cumulative effects on health and disability that emerge with increasing age. In addition, because the goal of this analysis was to investigate whether health-related events were primarily associated with MS or with aging itself, it was not designed to evaluate the potential impact of any DMT on outcomes. Future studies through the Multiple Sclerosis Leadership and Innovation Network (MS-LINK) consortium should aim to more completely characterize disease management and care in older people with MS.

Overall, these insights into infections, malignancies, health care use, and mobility impairment in older adults with and without MS will contribute to optimizing care in the understudied and increasingly prevalent population of older people with MS.

Outcomes and Health Care Service Use in Adults 50 Years or Older With and Without Multiple Sclerosis: A 6-Year Observational Analysis

Multiple sclerosis (MS) is a chronic, unpredictable, and potentially highly debilitating neurological condition. It is often diagnosed in young adulthood but can start earlier in childhood and adolescence. When MS is diagnosed and treated in pediatric clinics, the level of support is often higher than in adult clinics. A dedicated young adult (YA) support group may help fill the gap that patients may experience when transitioning to adult care. This qualitative descriptive pilot study explores the feasibility and outcomes of a virtual support group for YAs with MS receiving care from an adult MS center.

This purposive, convenience sample consisted of 8 participants between the ages of 18 and 25 years who met monthly for 6 virtual sessions. Participants completed a pregroup questionnaire with 6 open-ended questions, and the sessions were based on these results. The results of the pilot implementation were evaluated through postgroup questionnaires with 5 open-ended questions. The data were analyzed using thematic analysis.

Several themes were identified from the pregroup questionnaires, including the transition from pediatric to adult care, support, coping skills, and the need for more information about MS. Themes from the postgroup questionnaire included suggestions for smooth transfer from pediatric to adult care, benefits of support and feeling less alone, coping strategies, and increased knowledge about MS.

The results of this study suggest that a dedicated virtual support group may provide YAs with MS with psychosocial support and validation through shared experiences and knowledge about living with MS.

From the Department of Neurology, University of Pennsylvania, Philadelphia, PA. 

 Nora Sekella, MSW, LCSW, Department of Neurology, University of Pennsylvania, 3400 Civic Center Blvd, Philadelphia, PA 19104, USA; 

Note: Dina Jacobs, MD, and Sona Narula, MD, are co-last authors.

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.

 None of the authors have any conflicts of interest to disclose.

 Board of Women Visitors at the Hospital of the University of Pennsylvania grant.

 Aspects of this study were in poster form at the Consortium of Multiple Sclerosis Centers Annual Meeting; June 1-4, 2022; National Harbor, MD. It received the Linda Morgante Hope Award.


Nearly 1 million people live with multiple sclerosis (MS) in the United States.

 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.

 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.

YAs diagnosed with MS face an overwhelming number of questions about the disease. Gajofatto et al

 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 al

 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.

 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.

 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.

 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.”

 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.

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.

 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.

 Online peer support can reduce the risk of loneliness and isolation through communication with other people, including learning from others and sharing coping strategies.

 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 (

). The completed questionnaires were sent electronically via secure email. The preprogram questionnaire information was used to inform the development of the program topics.

We opted for a qualitative descriptive design, owing to the phenomenological nature of our study in a health-care setting.

 Theme development is the basis of qualitative descriptive research and an appropriate approach to answer the study question.

 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 

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 

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.

Suggestions for Smooth Transfer From Pediatric to Adult Care

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).

List what tests are needed and where to go. 

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).

Help transferred patients feel less alone. 

“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).

Transferred patients need others to understand how they feel. 

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).

Understand the needs of the support people. 

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).

Participants benefited from a participant-led group chat. 

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.

Explain why medication is needed for MS. 

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).

Address concerns about the ability to start a family. 

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).

Talk about disclosing one's MS diagnosis at work. 

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.

 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.

 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.

 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.

 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.

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.

 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.

 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.

 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.

 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.

Research and the Support Group Experience

Clara Giocondi, CCC-SLP

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