Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review

In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers. MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life. Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS.


Introduction
Multiple sclerosis (MS) is an autoimmune inflammatory and neurodegenerative disease characterized by demyelination of the central nervous system [1][2][3]. Until recently, MS was considered a disease that predominantly affects adults, but recent evidence has shown a growing prevalence of MS in pediatric populations (≤18 years old) [4,5]. A recent epidemiological study by Yan, et al. [6] reported an overall global prevalence of 8.1 (95% C.I: 2.2 to 13.9), and an overall global incidence of around 0.87 (0.3 to 1.4) out of 100,000 people. This rise in prevalence has been widely attributed to developments in diagnostic measures and increasing awareness among healthcare professionals [7][8][9]. listed in the protocol. We also searched the reference lists of eligible studies and requested articles from personal libraries of the expert panel on EMSP for additional literature.
The inclusion criteria of the studies were categorized according to the SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, Research type) approach [30]. We included studies evaluating: (1) Children and adolescent with MS and/or (2) Formal or informal caregivers of CAMS; (3) Needs and experiences of CAMS and their caregivers; (4) Existing services, supports and/or consultation models offered by healthcare, social and educational services for CAMS and their caregivers; and/or (4) Qualitative or quantitative studies (except case series, review articles); (5) Studies published in peer-reviewed academic journals or conference proceedings. Abstract screening was independently performed by two groups of authors (Group 1: S.G, Group 2: R.M, E.K, R.L, M.M, N.C.B, V.V.P, A.C) with full texts of articles screened by two authors (S.G. and R.M). In cases of ambiguity regarding the study eligibility, discussions were held in monthly group meetings between authors to seek a consensus. After the selection of the studies the following data was extracted from the eligible studies: author details, study aims, country of research, study design, descriptive information of caregiver and/or individual with CAMS (i.e., sample size, age, gender), time from diagnosis of CAMS, assessment tools utilized, and study outcome(s).

Quality Assessment
Methodological quality of the included studies was assessed using the Mixed Method Appraisal Tool (MMAT) [31]. The MMAT enables the appraisal of mixed methods designs, qualitative designs, and a variety of different quantitative design types (e.g., randomized controlled trials, nonrandomized designs and descriptive designs). This tool includes a distinct set of screening questions depending on the methodological approach employed which enables a score to be computed based on the number of criteria (0-100%) met for each study based on their design. Following the MMAT guidelines of Pace, et al. [31], the categorization of the studies was done as high (four criteria met), moderate (two to three criteria met), and low (less than one criterion met) quality. Overall, this tool gives an indication of the methodological quality of studies in isolation.

Data Synthesis
Results were analyzed using the process of narrative synthesis. Outcomes regarding needs and experiences of pediatric multiple sclerosis and their caregivers were classified according to their nature as per the GRADE-CERQual evaluation (Grading of Recommendations Assessment, Development, and Evaluation of Confidence in the Evidence from Reviews of Qualitative research) approach. This approach allows an amalgamation of review findings that can help in the development of recommendations used to support CAMS and their caregivers based on four main criteria: methodological limitations, coherence of the review findings, adequacy of the data, and the relevance of the studies to the review question. The GRADE-CERQual approach can be used to estimate the level of confidence i.e., high, moderate, low, or very low on the outcomes of a knowledge synthesis [32]. The assessment of GRADE-CERQual was derived from both the individual study quality appraisals (because of the MMAT screening), and a consideration of the extent to which the overall review findings address the objectives of the review.
Summary findings from the review were also shared with a consortium of 35 identified experts (hereafter termed the "expert group"), previously been established by EMSP. This group comprised of a variety of stakeholders with either professional experience in caring and supporting people with pediatric MS, or who had lived experience of MS as a young person or caregiver. Specifically, the expert group involved healthcare professionals, including pediatric neurologists, MS society representatives from various European countries, and patient and caregiver research partners at the EMSP. In order to gather feedback, a lay summary of the review findings was developed and emailed to this expert group in December 2020. Experts were given the opportunity to indicate if and how the experiences and needs of CAMS and their caregivers identified in the review resonated with their own experiences. A total of 10 responses were received from experts spread across Portugal, Spain, Romania, Greece, Germany, Denmark, Iceland, Belgium, and Italy.
Receiving the diagnosis: The presence of health care experts was helpful as they explained treatments options and prognostic outcomes. Reports regarding the information to be overwhelming was also documented. Reaction to diagnosis: Reactions included feelings of "shock", "desperation", "sadness", and "fear". Different approaches regarding disclosing diagnosis (ranging from maintaining privacy to being completely open with others). The main themes were: Diagnosis: Large number of discrepancies in terms of diagnosis i.e., lack of knowledge or negligence reported on the behalf of physician (clinical visit before diagnosis: 3.6 ± 2.0). Parental reaction: Parents reported being "scared" and "overwhelmed", followed by feeling "shocked", and a "sense of relief" after initial diagnosis, attributed to lack of awareness regarding MS.

High
Parents' experiences associated with a feeling of "living with uncertainty". Diagnostic uncertainty: Diagnosis process was lengthy and frightening, due to rarity of the condition and interpretation of fluctuating symptoms. Conflicts in medical opinion and a lack of definite diagnosis increased uncertainty. Daily uncertainty: Daily events defined as "unpredictable" and "uncertain". Inability to predict outcome of disease made it difficult to manage illness along employment, familial responsibilities, social activities and normal family events. Lack of access to reliable information and professional support contributed to uncertainty. Searching of information (i.e., from medical practitioners, friends, family, internet, charities) post-diagnoses alleviated uncertainty. However, initial optimism was replaced by frustration when it was evident that medical specialist knowledge was limited and that the information available for undesirable and that the "anticipated sense of control was not realized". Uncovering negative stories while searching the information increased uncertainty. Continuous monitoring: Observing, monitoring and documenting changes in child's behavior, physical activity was also mentioned as a measure to reduce uncertainty. This was reported to allow a greater sense of control over their child's health. Concerns regarding misinterpretation of signs increased uncertainty. Implementing changes: Modifying diet (e.g., nutritious food, Vitamin D), reduced uncertainty regarding potential relapses. However, uncertainty regarding the lasting effects of the diet on the child's illness increased the parent's uncertainty regarding the extent to which they can  The main themes were: Symptoms: The majority developed gradual symptoms which prompted parents to seek medical advice. Recognizing a problem: CAMS reported to be reluctant to disclose symptoms. Some parents adopted a "wait and see" approach and tried to manage symptoms at home. Seeking medical advice: Continuation of symptoms or additional symptoms prompted parents to seek medical advice. Some parents reported that teacher remarks regarding the child's health prompted them to seek medical advice. Most parents sought advice from a general practitioner at first. The influence of child's willingness to seek medical advice was also a major factor in seeking this. Communication concern: While many (n=12) families reported being satisfied with the first healthcare consultation, others (n=11) reported being unsatisfied. Lack of tangible evidence regarding symptoms reported as one of the main concerns. Moreover, CAMS reported to feel that their Feelings of concern reported with respect to disease progression. Families supported the idea of including the CAMS during the phase of disclosure of diagnosis. Involvement with CAMS communities aided coping and adapting.

Moderate
The main themes were: Recurring loss: Onset of psychological and emotional reactions discussed with respect to initial diagnosis. An avoidance behavior was reported by few CAMS during to convey the symptoms to their caregivers. Suffering: Period of diagnosis characterized with feelings of "shock", "confusion", "sadness", "frustration", depression, "hopelessness" and" anger".

Fear of unknown:
The unpredictable nature of the illness led to fear with respect to future disabilities and loss of independence. Losing trust: The prediagnosis phase of testing considered as foreign, irrelevant and confusing. A distrust in the medical system was reported, in addition to feelings of "anger" and "frustration". Sense making: Questions over making sense of themselves in the world following diagnosis were reported. CAMS were reported to use "sense making" to question their diagnosis and why they were diagnosed with it.  Selective disclosing: Disclosing the experiences of MS was associated with a feeling of "relief". Selective disclosure of their diagnosis, symptoms was reported for to protect their personal self, reputation, and a means to cope with emotional experiences. Judging readiness/openness to disclosure: CAMS described a process of assessing the readiness of an individual i.e., emotionally to whom the disclosure was meant to be made. Feelings of "testing waters" were reported as they wanted to protect themselves from being emotionally vulnerable. Developing cautious wisdom: A shift in mindset was reported by CAMS for others' perception of open mindedness towards a new sense of prejudice. Meaning making: All CAMS described ways they worked towards rebuilding their own narratives regarding the self and the world.  Higher depression score in HADS in parents with CAMS than Ct. Lower PSOC, and a need to seek spiritual support on F-COPES in parents with CAMS than Ct. Higher anxiety score for HADS in parents with CAMS as compared to normal parents. Lower WHO-five well-being index ENRICH score in parents with CAMS as compared to normal parents.

Gender differences between groups
Higher score for mothers of CAMS on the F-COPES seeking spiritual support than Ct. Higher depression score in HADS, the F-COPES seeking spiritual support for fathers of CAMS than Ct. Lower score in PSOC score, ENRICH conflict resolution subscale in fathers of CAMS as compared than Ct.

Gender differences within group
Significantly higher levels of ENRICH conflict resolution subscale, F-COPES total score in mothers as compared to fathers of CAMS. Higher score of multiple sclerosis knowledge questionnaire for mothers as compared to fathers of CAMS.

Moderate
The main themes were: Learning the diagnosis: Feelings of being "confused", "scared", "sadness", and "pity" reported upon learning of diagnosis. Feelings of "relief" also reported by some CAMS as they finally had an explanation for symptoms. Knowledge of CAMS acquired via parents, healthcare professionals, printed information, self-experience, self-research via school projects, and internet. The most preferable means to obtain the information was described as to being able to read themselves or being talked by someone. Noticing the difference: Most important differences noted since CAMS diagnosis were: heat intolerance, followed by fatigue (5), headache (5), cognitive disabilities (5),  (2), seizures (2), depression (1), none (2). Experiences were reported with respect to not being able to perform fine and gross motor skills as before, having difficulties in carrying out school activities, being more cautious than before, and being treated differently than before. Staying the same: Continuing attending school, meeting friends and taking part in social activities was reported by all the CAMS even after diagnosis. Continuing personal activities of interests such as, reading, listening to music, playing on computer were also reported.
Coping with CAMS: Stressors: A range of stressors were reported by CAMS that were related to treatment, symptoms, unpredictability of relapses, being treated differently, missing school, effect on family, restriction on lifestyle and uncertainty of future. Strategies: Maintaining a positive outlook on life, continuing to strive for their goals, and making downward comparisons with others having worse life conditions were some of the strategies CAMS implemented to cope. Remaining busy for distracting themselves from their condition, receiving support from others for dealing with CAMS. Negative influences as a mean to cope also were reported by some CAMS. Gaining support: Parents were defined by all CAMS as their main source of support. Moreover, the helpful role of friends and healthcare professionals was also mentioned as they encouraged them to accept their condition and provide information, respectively. Dealing with treatment: Discomfort associated with injection, side effects and Exclusions from activities from peers was also documented. Disclosing diagnosis: All the CAMS felt the need to disclose information to close family members, teachers, employers, and friends. Adolescents primarily felt others knowing the diagnosis as a matter of embarrassment and preferred to limit disclosure. Effect learning: Relapses and medical appointments were reported as a major factor for missing school. Moreover, cognitive deficits were reported to affect memory and concentration. Fatigue was also reported to be a main issue that affected their ability to finish a task. Looking towards future: All CAMS described having a feeling of "hope" about the future. None of the CAMS reported that they changed their career goals considering CAMS diagnosis.
Controls: In addition to CAMS, some studies had also included a control group to comparatively evaluate the differences in the needs and experiences with that of CAMS. Here, twelve studies had included a comparative evaluation of CAMS with healthy children, children with other neurological disorders, and people with adult-onset multiple sclerosis [24,25,[39][40][41][42][43][44][45][46][47]49]. In the healthy control group nine studies [24,[40][41][42][43]45,46,48,49] reported the data of 9938 age matched controls. Here, a total of 6207 females and 3142 males were included in the healthy control group, with an average age of 14.7 ± 4.8 years, one study did not report the gender distribution and the average age of their healthy control sample [40].
Additional control comparison of pediatric other neurological disorders was reported by three studies [25,40,43]. It is important to note that two studies discussed here had also jointly presented data of healthy controls discussed in the previous paragraph [40,43]. Nonetheless, these three studies presented the data of 9324 children with neurological disorders. In the three studies, one did not report neither the gender distribution nor the age of their sample [40]. In the rest of the two studies [25,43], there was a total of 98 females, and 118 males, with an average age of 10.8 ± 2.5 years.
Besides this, two studies in our review also compared the outcomes between CAMS and people with adult-onset MS [44,47]. Here, data were reported for a total of 135 adults with MS. In these two studies, one study did not report the gender distribution and the age of their sample [47]. The other study by Portaccio, et al. [44], however, had reported the data of 68 females, 47 males with an average age of 27.3 ± 8.0 years.

Assessment
In the included studies different methods of assessments were used to assess the needs and experiences of CAMS and their caregivers. Here, while 10 of the included studies had used interviews to assess the needs of CAMS and their caregivers [18,23,[27][28][29][33][34][35]37,38]. The other 16 studies had used heterogenous quantitative assessment tools to assess the impact of MS on quality of life of CAMS, overall medical visits, social impact, adherence to medications, school performance, cognitive performance, etc. A detailed list of the assessment tools for each study has been provided in Table 1.

Mixed Method Appraisal Tool
After a methodological appraisal of all the studies, 17 were reported to be of high quality [24,[26][27][28][34][35][36][38][39][40][41][42][43][44][45][46][47]50], whereas nine were observed to be of moderate quality [18,23,25,26,29,33,37,48,49]. A detailed description of the methodological appraisal for the quantitative nonrandomized trials and qualitative studies has been provided in Table 1. The majority of bias in cohort and cross-sectional studies were found because of lack of clarity regarding the presence of confounders in the study's design and incomplete data outcomes, respectively. In qualitative studies, the majority of bias was observed due to lack of coherence between different phases of the study, i.e., data collection, analysis, and interpretation. A detailed description of the included studies has been provided in Table 1.

Synthesis of Findings and Grade-CERQual Assessment
The findings of the included studies were thematically analyzed according to the reported experiences of both CAMS (Table 2) and their caregivers (Table 3). This analysis illustrates the negative impacts that pediatric MS has on various domains of CAMS and caregiver functioning, as well as highlighting a number of barriers and facilitators to more positive outcomes in both these groups. In relation to caregivers, we also note evidence in relation to experiences at diagnosis and future concerns. This information is also presented in the context of the Grade-CERQual criteria suggesting some variability in confidence of these experiences. Table 2. Illustrates the Grade-CERQual criteria from the included studies for the experiences of CAMS.

Discussion
Gaps in the existing literature with respect to the understanding of the incidence and outcomes of pediatric PMMS have been widely documented. International support groups including the World Health Organization [51] and Multiple Sclerosis International Federation [8], have repeatedly called upon the scientific and healthcare community to develop a state of evidence that clearly delineates the impact of pediatric multiple sclerosis on both children/adolescents and their caregivers. This present review addresses this gap by establishing a state of evidence regarding the needs and experiences of CAMS and their caregivers. We discuss the findings with respect to the experiences of CAMS and caregivers during and after the diagnostic phase of the disease and its impact on their activities of daily living.

Diagnostic Phase
One finding from the review was the difficulties associated with the diagnostic process itself, particularly from the point of view of the caregiver. An MS diagnosis may be delayed and difficult due to a lack of understanding among healthcare professionals and difficulties distinguishing diagnoses with that of associated demyelinating disorders (e.g., acute disseminating encephalomyelitis) [9]. Hinton and Kirk [27] after interviews with parents of CAMS, reported that misinterpretation of the symptoms of disease by the primary care practitioners was common. Medical practitioners lacked knowledge in interpreting neuroimaging reports, and sometimes confused MS incidence with other psychosocial developmental issues, resulting in delayed referral and diagnosis. Hebert, et al. [35] identified similar discrepancies in terms of diagnosis, reporting that an average of 3.6 ± 2.0 clinical visits were needed in a cohort of 42 children before receiving a diagnosis. This could possibly increase the financial burden on the family [52], and lead to a delay in the implementation of preventative therapies, eventually worsening the prognostic outcome of MS [3,35,53,54]. We identified the pre-diagnosis phase to be associated with aggravated levels of emotional distress (moderate confidence) especially for caregivers. One clear way to reduce such distress may therefore be to increase awareness of pediatric MS not only in neurologists and radiologists, but also pediatricians, pediatric neuropsychiatrists, and general physicians involved in the primary health care system. In addition to this, financial support, increased accessibility to a range of treatments, and coordinating referrals for psychological support to families during the pre-and postdiagnosis phases, may further alleviate emotional distress.
In our data synthesis, we identify, with a high level of confidence, that additional information about the course of the disease is needed by caregivers. We found that the process of communicating diagnosis to families served as another source of emotional distress for caregivers [27,29,35]. Some complained about receiving an overwhelming amount of information which left them feeling confused. While we might expect that specialist pediatric MS neurologists or those working in specialist MS centers should be better placed to disseminate information appropriately, increasing awareness and understanding of MS among all clinicians working with CAMS could enable them to disclose information in a manner that may reduce emotional distress associated with disease uncertainty in families. Moreover, our review found that, because diagnosis can be a shocking experience for parents and families of CAMS themselves, they might not be equipped to deliver this information to their children. This may be mitigated by providing advice to families regarding how to convey the diagnosis information to their children or by conveying diagnosis information in a tailored manner (e.g., providing tailored material about the prospective impact of MS with a multidisciplinary team including pediatric neurologists, psychologists to mitigate experiences of anxiety in both CAMS and caregivers) An additional aspect that may reduce emotional distress in CAMS is encouraging their own involvement during the diagnosis and decision-making process. This may allow them to develop a self-perception of control over MS and foster better treatment adherence [35,55].

Physical & Psychological Impact of MS
The multifaceted impact of MS on both the physical and psychological health of CAMS is now recognized. In the physical domain, fatigue is one of the major challenges faced by CAMS in carrying out basic activities of daily living [18,41,48,49,56]. Our synthesis found that physical fatigue acted as a deterrent for many activities, especially in coping with school related activities. Amato, et al. [39] reported a high prevalence of fatigue related outcomes in almost 73% of their cohort with MS, with fatigue-related symptoms associated with increased absence from school and cocurricular activities. Likewise, Carroll, et al. [18] reported that fatigue had a pronounced negative influence on school-related activities. CAMS in this study likened fatigue to a feeling of "wearing a giant sandbag" which eventually reduced their ability to carry out activities of daily living. Our review also identified caregivers to perceive the negative influence of fatigue on school performance. Yeh, et al. [45] for instance, reported that parents of CAMS perceived the school related performance of their child to be poorer as compared to parents of age-matched healthy controls. Here, mismanagement of time because of fatigue-related symptoms, the negative impact of fatigue on mental health, and lack of knowledge regarding how to manage fatigue-related symptoms were reported by caregivers as some factors leading to poorer school-related performance in CAMS [18,39,57,58]. Moreover, to add towards the burden of MS, a lack of awareness among teachers was reported in some of the studies reviewed [18,29,33,39]. Here, one study reported that teachers commonly misinterpreted fatigue-related symptoms of children as "laziness" [18,59]. As a consequence, increased pressure of school-related work and poorer academic performance could predispose CAMS towards poorer mental health and possibly negatively influence employment-related outcomes later on [40]. In our synthesis, we found with high overall confidence that fatigue is a prominent barrier for CAMS and also that school-related performance is negatively impacted. While there clearly are other factors which may impact on the experience of school and cognitive function in this population that were not explored in this study (e.g., lesion burden and location), these findings suggest that identifying ways to mitigate fatigue may be one way of facilitating a more positive educational experience for CAMS. Similarly, we have moderate confidence that lack of teacher's knowledge acts as a barrier for CAMS, with teachers' misinterpretation of symptoms common. This may be due to poor levels of awareness of PMS in the current educational system [18], and families' miscommunication of the disease diagnosis to teachers, due to fear of prejudice and/or embarrassment [23,29,33]. Increased educational support, by means of both increased awareness and disease specific accommodations for CAMS by the school could help resolve this challenge [29]. We also recommend the facilitation of frequent lines of communication between parents and teachers to discuss disease-related outcomes. Previous studies have documented that disclosures of other pediatric diseases in the educational context led to enhanced accommodations in the teaching environment allowing children to better cope with the disease [27,60,61].

Social Impact of MS
Another important consequence of MS which is often overlooked is the social impact of the disease on both the child and their caregiver [12]. In CAMS, fatigue-related reduction in physical activity was identified as one of the major aspects that led to the worsening of peer relationships. Carroll, et al. [18], for instance, reported that the inability of CAMS to cope with peers forced them to opt-out of social relationships because of feelings of guilt. Failing to disclose diagnosis to peers because of fear of repercussions (e.g., differential treatment) was considered an additional aspect that negatively impacted social relationships of CAMS. An important area to look into is disease-related stigma prevention in the educational settings by peers and educators. Besides, we found with high confidence that providing additional social support to CAMS could be important in improving their quality of life. As fatigue and other unpredictable symptoms, such as relapses, as well as complexities in social relationships with peers and difficulties in educational settings result in experiences of mental health issues for CAMS (high level confidence finding), adequate psychological support should be provided to CAMS. In collaboration with patient organizations, adequate responses to this unmet need should be established to ensure that psychological support that suits CAMS according to their disease course stage, such as in-patient organizations groups or in educational and medical settings [21,62].
Similarly, caregivers reported a negative impact of MS on their social lives. Hinton and Kirk [28] reported that parents of CAMS suffered in terms of their social interactions primarily because of time constraints due to disease management and increased instances of disputations with peers, especially while discussing the diagnosis of their child. In addition to worsened peer relationships, both CAMS and their parents reported negative influences of the disease burden on familial relationships. Cross, et al. [23] reported that MS exerted extra demands on a family in terms of disease management. Moreover, the authors mentioned that the extra demands on the family resulted in strained marital and sibling relationships. Harris [34] too reported poor familial relationship outcomes especially between siblings, citing poor communication between family relations regarding adjustment and adaptation as the main reasons for this decline. In our review, we found that MS had an overall negative influence on social outcomes in both CAMS and their caregivers with a high level of confidence. In order to mediate this negative impact on social outcomes, a need for increased social support for both CAMS and their caregivers was identified in our data synthesis. Here, the organization of community support events by MS communities, to bring existing families of CAMS in contact with each other, was considered as a helpful measure to cope. Moreover, the organization of summer camps in which CAMS discuss their day-to-day experiences was reported to promote coping strategies [29,63].

Limitations
While this review provides good evidence of the various physical, psychological and social impacts that can be experienced by CAMS and their caregivers, there are likely to be many other factors that impact on these experiences that were not captured in the review. For example, socioeconomic factors, such as the cost of treatment, availability of health insurance, and access to appropriate healthcare, are likely to exacerbate difficulties for families impacted by pediatric MS. While we found no evidence to suggest any differences in experience of those living in countries differing in the whether or not there was provision of a universal healthcare system, it seems reasonable to expect that those unable to access healthcare would be more negatively impacted. Furthermore, our review did not capture differences in experiences according to type of MS, extent of progression or imaging severity. Since most of the studies included in the review comprised of participants with a low EDSS (e.g., 10 studies included CAMS with an EDSS of less than 1.6), the needs and experiences of CAMS with higher levels of disability and their caregivers may not be reflected in the review findings. Finally, there may be some limitations relating to the methodologies used to capture experiences in the included studies. For instance, the absence of quantitative measurements for some variables means that these can only be interpreted subjectively.

Conclusions
This systematic review presents the first detailed synthesis of current evidence regarding the needs and experiences of CAMS and their caregivers. Most importantly, the findings of the present review resonated with the experiences of MS patient organizations, expert members, MS support groups, and patient research partners affiliated with the European Multiple Sclerosis Platform. We identify specific gaps in the existing policies and support systems based on the experiences of CAMS and their caregivers. We also identify specific needs in terms of psychological, social, educational, informational, and financial support which the policymakers and existing support systems can specifically use to bridge the gaps in existing policies and enhance the quality of care to both CAMS and their caregivers.