Growing Up with MS: The Adolescent Experience of Pediatric-Onset Multiple Sclerosis

Abstract

Adolescents diagnosed with pediatric-onset multiple sclerosis (POMS) face a distinct set of challenges as they cope with a chronic neuroinflammatory disease during a formative stage of life. This review examines the growing body of literature on the psychosocial and cognitive consequences of POMS, from the trauma of diagnosis to disruptions in identity development, academic difficulties, and increased vulnerability to mental health issues. Many young people with MS experience fatigue, cognitive decline, depression, and anxiety, all of which can significantly interfere with their daily lives and overall well-being, even if physical symptoms of the disease remain limited. Yet, current care systems often fall short in addressing their needs, and interventions tailored to adolescents remain scarce. There is a pressing need for developmentally sensitive, family-centered, and integrated models of care. Targeted research and policy action are essential to better support this underserved group. This review builds on prior research by integrating recent findings with adolescent-development frameworks and by proposing a multicomponent health-promotion intervention model specific to POMS. The review describes relevant evidence-based approaches including cognitive behavioral therapy, mindfulness, peer-based interventions, and cognitive rehabilitation that were validated in adults with MS and chronically ill adolescents. The objective is to synthesize evidence and translate it into actionable recommendations for clinical care and research.

1. Introduction

Multiple Sclerosis (MS) is a chronic inflammatory demyelinating disease of the central nervous system, typically diagnosed in young adults. However, a subset of patients experiences symptom onset during childhood or adolescence, known as Pediatric-Onset Multiple Sclerosis (POMS). Defined as MS with disease onset before the age of 18, POMS accounts for approximately 3–5% of all MS cases [1]. Despite its relative rarity, POMS presents unique challenges due to its early onset during critical periods of physical, cognitive, and emotional development. Because onset occurs during key periods of neurological and psychosocial development, POMS presents a dual challenge—biological disease progression and disruption to the normative tasks of adolescence.

POMS is characterized by a highly inflammatory course, with over 98% of cases presenting as active relapsing-remitting MS. Common initial symptoms include optic neuritis, transverse myelitis, ataxia, and brainstem syndromes, often with acute disseminated encephalomyelitis (ADEM)-like presentations. While early relapses may show relatively good recovery due to enhanced neuroplasticity, the long-term prognosis is less favorable [2]. POMS patients experience more frequent relapses early in the disease course and accumulate neurological disability at a younger age compared to those with adult-onset MS, due to the longer disease duration [2]. Diagnosing POMS remains difficult due to overlapping presentations with other acquired demyelinating syndromes and the lack of pediatric-specific criteria [3]. Misclassification is common, often leading to diagnostic delays, and access to specialized pediatric MS centers is uneven, contributing to variability in diagnosis and treatment initiation [3].

Beyond the physical manifestations, POMS impacts the psychological and emotional well-being of affected adolescents. Cognitive impairment is a significant concern, affecting approximately 20–35% of POMS patients, primarily involving attention, processing speed, and memory [4,5]. These cognitive challenges, coupled with commonly co-occurring physical disabilities and fatigue [6], can severely disrupt learning, social interactions, and overall quality of life. Furthermore, studies have shown that adolescents with POMS are at heightened risk for mood disorders, with significantly higher rates of depression, anxiety, and other psychiatric conditions compared to their healthy peers [7]. The psychological burden of living with a chronic illness during adolescence can lead to feelings of isolation, stigma, and reduced self-esteem, further exacerbated by the unpredictability of relapses and the need for long-term medication. Beyond general psychiatric burden, recent work in adults with MS using the General Health Questionnaire shows a domain-specific profile: worse overall mental health alongside higher social dysfunction/anhedonia and loss of confidence, while the depression/anxiety subfactor is not consistently elevated when assessed by this instrument [8]. Furthermore, the impact of POMS extends beyond the individual to affect family dynamics and social relationships. These effects underscore the need for developmentally tailored interventions that integrate disease-modifying therapies with psychological and educational support.

Despite growing clinical interest, POMS remains significantly understudied relative to its burden and complexity. Historically, research has lagged due to small patient populations, ethical concerns regarding pediatric trials, and reliance on adult-based diagnostic criteria. While international collaborations and high-quality longitudinal registries are now emerging, there remains an urgent need for dedicated, developmentally informed research across diagnostic, therapeutic, and psychosocial domains. This critical review synthesizes the current literature on the psychosocial and cognitive impacts of POMS in adolescents. I organize the evidence into thematic areas: the experience of diagnosis; interruption of autonomy and identity formation; cognitive impairment and academic disruption; emotional and mental health risks; and impact on future planning and role transitions. In this discussion, I examine the state of interventions for psychological and cognitive health in this population, highlighting the paucity of adolescent-specific trials. Where direct studies in POMS are lacking, I draw on evidence from interventions in adult MS and in adolescents with other chronic illnesses. My goal is to identify key psychosocial needs of adolescents with POMS, underscore the urgent need for developmentally tailored mental health interventions, and outline promising therapeutic approaches for future research and clinical practice. While earlier reviews (especially MacAllister et al., 2007 and Tarantino et al., 2024) [9,10] outlined psychosocial outcomes of POMS, the present work extends this literature by (a) incorporating new data published in the past five years; (b) applying a developmental-psychology lens to adolescence-specific mechanisms; and (c) proposing an evidence-informed, developmentally tailored intervention framework that engages with evidence-based strategies currently in use in chronically ill adolescents. A synthesis explicitly bridging biomedical and psychosocial findings and articulating a structured intervention model has not yet been published.

Figure 1 presents the conceptual model, illustrating the key domains influencing overall well-being in adolescents with POMS. The model depicts seven interrelated domains—cognitive, psychological and emotional, social and relational, physical, developmental and identity-related, family-related, and systemic—each influencing the overall well-being of adolescents with POMS.

1.1. Methodological Note

This paper is a narrative review rather than a systematic one. Literature was identified through searches in PubMed, PsycINFO, and Google Scholar between January 2000 and May 2025 using combinations of the terms ‘pediatric-onset multiple sclerosis,’ ‘adolescent,’ ‘mental health,’ ‘cognitive,’ ‘psychosocial,’ and ‘intervention.’ Reference lists of key papers and recent reviews were also screened for additional studies. Inclusion was limited to English-language peer-reviewed publications focusing on adolescents with POMS, supplemented by adult MS and pediatric chronic illness studies when adolescent data were unavailable. It must be noted that comorbidity and psychiatric burden estimates in POMS differ across studies for predictable reasons: (i) assessment tools (e.g., psychometric tools, computerized batteries, full neuropsychological evaluations), (ii) age ranges and time-since-onset, (iii) sampling frame (single-center vs. multicenter registry), and (iv) treatment era (pre- vs. post-widespread first-line high-efficacy therapy). Where recent multicenter or population-based cohorts are available, their figures are presented alongside older/smaller series to avoid overstating certainty. Given the narrative design, comparisons are descriptive rather than protocol-driven.

1.2. The Experience of Diagnosis

Being diagnosed with MS in adolescence is often a distressing and disorienting experience. The teenagers and their families may be unfamiliar with MS and its implications [11]. Upon hearing the diagnosis, adolescents interviewed in qualitative studies reported a “multitude of feelings” ranging from fear and confusion to anger and sadness [11]. In a qualitative study of 12 POMS patients (ages 8–18), Boyd and MacMillan found that participants initially struggled to grasp the disease and its prognosis [11]. However, while qualitative narratives such as this one provide essential contextual understanding, which may be missed in quantitative studies, they cannot establish the prevalence of such issues.

A systematic review found that the pre-diagnosis phase involving puzzling symptoms, multiple medical evaluations along with the moment of diagnosis itself tend to be characterized by pronounced emotional distress [12]. This distress is noted especially among caregivers, but adolescents also experience shock, anxiety about the future, and a sense of loss of normalcy [12]. Studies suggest that both children with POMS and their parents endure high stress around the time of diagnosis, highlighting a need for better support during this period [12]. Despite the initial turmoil, many adolescents demonstrate resilience over time. As they begin to understand and manage their illness, they adapt to MS-related changes and integrate the disease into their daily lives, as indicated by a qualitative exploration of 29 narratives of adolescents with POMS [13]. Youths gradually learn coping strategies for the physical and emotional challenges of MS; they tend to reject letting MS define them entirely, striving to maintain normalcy [13]. In Boyd and MacMillan’s qualitative study, participants noted that although their lives were different in some ways, “in many ways they felt unchanged” and MS was “only one component of who they were” [11]. This reframing of identity in the aftermath of diagnosis is a recurring theme: adolescents work to incorporate MS into their self-concept without allowing it to eclipse other facets of their identity. Nonetheless, the experience of diagnosis can leave lasting emotional imprints. Early emotional responses (such as fear or hopelessness) may linger or resurface during later disease milestones, contributing to ongoing anxiety or adjustment difficulties [13]. This underscores the importance of psychological support at diagnosis–for both patients and families–to process the news, build understanding of MS, and instill hope and coping from the outset. Experts recommend that the newly diagnosed receive comprehensive education about MS and access to counseling or peer support, which can help mitigate trauma at diagnosis and empower them to face the illness [14].

1.3. Interruption of Autonomy and Identity Formation

Here, findings are derived from a small number of POMS studies alongside broader adolescent chronic illness literature, as few investigations have examined autonomy and identity formation specifically in POMS.

Adolescence is a developmental stage centered on gaining independence from parents and solidifying one’s identity. A chronic illness like MS can significantly interrupt these processes [15,16]. Healthy teens typically assert autonomy through activities like socializing without parents. In contrast, adolescents with POMS face increased dependence on caregivers and medical providers, which can be at odds with their drive for self-sufficiency. Treatment regimens (e.g., regular check-ups, diagnostic tests, injections, or infusions) and monitoring of symptoms may require parental involvement in a way that healthy peers do not experience. For example, a teenager on injectable disease-modifying therapy might rely on a parent for medication administration or transportation to appointments, limiting their sense of independence. This “relational autonomy”–wherein the adolescent must negotiate independence within the context of their illness and parental support–can be challenging for families. Parents naturally want to protect a chronically ill child, but overprotectiveness may unintentionally stifle the adolescent’s normal growth of autonomy, leading to frustration or conflict [17].

MS can also pose unique challenges to identity formation. Erikson’s foundational theory describes adolescence as a time of identity vs. role confusion [18]. Chronic illness experiences can compound this identity work. Adolescents with MS must integrate the role of “patient” or “person with a disability” into their self-image at a time when they are still figuring out who they are. Some struggle with feeling “different” from peers, which can affect self-esteem and confidence in their identity [11]. One narrative study of adolescents with various chronic illnesses described how illness can create a sense of an identity divided into the healthy self vs. the sick self, which adolescents must reconcile [19]. In POMS, teens may initially resist identifying with the disease, preferring to “act like any other teenager” and not be defined by MS [11]. Adolescents express a desire to manage MS discreetly, maintaining peer relationships without emphasizing their diagnosis, but also acknowledge that MS changed how they see themselves and plan their futures [11,20]. Over time, qualitative accounts suggest that some find that battling MS becomes a meaningful part of their identity (e.g., seeing themselves as resilient or as an advocate), while others continue to minimize the disease’s role in how they view themselves [11,20].

Notably, chronic illness can derail milestones of psychosocial development. Garey et al. point out that when a medical condition begins in childhood and continues into adolescence, it can “derail the normal behavioral development teens go through as they become more independent and separate from their parents” [21]. For example, a 16-year-old with MS might be unable to get a driver’s license due to disability or may delay moving out for college because they need ongoing care. As such, life steps that contribute to adult identity are disrupted, leading to feelings of being “left behind” compared to peers who are moving forward in life. In some cases, adolescents report a sense of developmental “arrest,” describing how illness keeps them in a dependent, child-like role longer than desired [22]. This can negatively affect self-concept, as they may perceive themselves as less mature or less capable than peers. However, it is important to recognize that the developmental expectation of autonomy described here reflects primarily Western, individualistic cultural norms, where most of the research on POMS to date has been conducted. In some Latin American, Asian, Mediterranean, and other collectivist societies, prolonged family interdependence may be normative and valued, and may not represent developmental delay or maladaptation. The psychosocial impact of chronic illness on adolescent autonomy must therefore be interpreted within a cultural context, and interventions should be designed with cultural humility, respecting diverse family structures and expectations for independence.

Involving adolescents in medical decision-making appropriate to their level of maturity is recommended to support their emerging autonomy [22]. Some families may employ transition plans where gradually the teen assumes more self-management (such as handling injection schedules or speaking for themselves at doctor visits) to prepare for adult independence. Clinicians also encourage normal adolescent activities when feasible such as allowing a teen on MS treatment to attend a school trip by arranging refrigeration for medications. Many succeed in integrating MS into their identity in a healthy way, viewing it as one aspect of themselves that has taught them resilience and empathy, rather than as a defining stigma [23,24]. Overall, however, the literature makes clear that POMS can interrupt the processes of autonomy and identity formation, highlighting a need for psychosocial interventions that specifically address these developmental domains, such as counseling focused on identity or programs to foster self-management skills [25].

1.4. Cognitive Impairment and Academic Disruption

Unlike the psychosocial domains, cognitive outcomes in POMS have been more systematically studied, with several large cohorts providing direct evidence. Where appropriate, comparisons to adult MS are included to contextualize developmental differences.

Cognitive impairment is a well-recognized consequence of MS, and it often manifests in adolescents with POMS, including in early stages of the disease [26,27]. Across studies, cognitive impairment in POMS spans roughly 20–35%, with variability that tracks differences in assessment tools, age bands, and sampling frames [4]. For example, in the US Network of Pediatric MS Centers, impaired processing speed on the Symbol Digit Modalities Test (SDMT) was present at 23.4% at baseline, and 14.1% showed clinically meaningful decline over ~1.8 years; relapses or steroid exposure produced transient SDMT worsening (−0.27 to −0.34 in mean z-score), underscoring state effects around inflammatory activity rather than fixed deficits [4]. By contrast, when cognition is sampled beyond processing speed using the Penn Computerized Neurocognitive Battery, POMS shows reduced accuracy (working memory, attention/inhibition, verbal memory, visuospatial processing) after adjusting for response time, while group differences on the SDMT alone may miss these deficits and the agreement for impairment classification is minimal (κ ≈ 0.22) [5]. This illustrates how test selection (screen vs. multi-domain battery) shifts detected prevalence and domain profile. Furthermore, the timing of testing around relapses or steroid courses should be considered to avoid misclassifying state-related dips as trait decline.

Unlike many other pediatric neurological conditions, POMS can cause acquired cognitive deficits during a child’s developmental years, impacting learning and school performance. Commonly affected domains include attention and information processing speed, learning, and memory, with pediatric MS patients experiencing greater deficits in general intelligence and linguistic abilities than adults with MS [10]. Studies show that attention and impulsivity issues typical for attention deficit and hyperactivity disorder (ADHD) issues are elevated in MS populations broadly and correlate with poorer quality of life [28]. In one large cohort study from the Swedish MS Registry, patients with POMS were more likely to experience cognitive impairment and a more rapid decline in information-processing efficiency over time compared to adult-onset MS patients [29]. Large registry work also shows trajectory differences: in Sweden (n = 5704 with longitudinal SDMTs), POMS patients had lower SDMT scores than Adult-onset MS patients (β = −3.59), declined faster over time (interaction β = −0.30), and were more likely to ever meet impairment in information-processing efficiency (71% vs. 60%) [29]. Recent research findings suggest that MS-onset during childhood increases vulnerability to cognitive decline, possibly because the disease interferes with normal brain maturation [30].

The impact of cognitive impairment on academic performance is a major concern. Adolescents with POMS often experience difficulties in school due to a combination of cognitive symptoms and disease-related fatigue [10]. Even when one’s physical disability is mild, slowed information processing can make it hard to keep up with lectures or complete tests in the allotted time, memory problems may impair the learning of new material, and attention/executive deficits can lead to disorganization along with trouble completing assignments [10]. Fatigue, one of the most common MS symptoms [6], exacerbates these challenges by reducing concentration and mental stamina in the classroom. A systematic review identified MS-related fatigue as the main contributor to poorer school performance and daily functioning in adolescents with POMS, with reported prevalence at 73% [12].

Recent research has highlighted the limitations of standard cognitive impairment assessments in POMS, particularly among high-achieving adolescents. Gur et al. (2025) proposed the concept of Personal Cognitive Decline (Personal-CD), defined as a decline in performance relative to an individual’s estimated premorbid abilities rather than population norms [31]. In a cohort of POMS patients, while only 26% met conventional cognitive impairment criteria, 45% showed evidence of the incipient Personal-CD. Notably, 73% of high-achieving adolescents demonstrated Personal-CD, which was significantly associated with depressive symptoms but not with disease severity [31]. These emerging findings suggest that standard neuropsychological assessments may overlook meaningful declines in function among high-performing youth—declines that, although subclinical, have life-changing consequences. This novel finding underscores the importance of incorporating intraindividual baselines into cognitive evaluations and tailoring emotional support as part of standard MS care. Clinically, incorporating intra-individual baselines would entail establishing each patient’s cognitive profile at diagnosis and tracking deviations over time using consistent test batteries or computerized tools. Such monitoring could alert clinicians to subtle functional decline even when standard scores remain normal, prompting early intervention, e.g., academic accommodations or referral for cognitive rehabilitation.

Beyond academics, cognitive impairment also interferes with everyday life, affecting tasks like keeping track of schedules, driving safely or learning new job skills. Together, these issues underscore that cognitive health is a critical aspect of POMS management. Experts advocate for comprehensive neuropsychological assessment of POMS patients, ideally at diagnosis to establish a baseline, and periodically thereafter [32]. Early identification of cognitive problems can prompt interventions such as cognitive rehabilitation or academic support before the child falls significantly behind. Unfortunately, specific interventions for pediatric MS are lacking. The development of effective cognitive rehabilitation strategies tailored for young MS patients remains a priority for future research. Many adolescents with POMS may require educational accommodations to succeed academically. These may include individualized education programs that provide extra time on tests, reduced course loads during relapses, access to note-takers, or flexibility in attendance when medical issues arise.

1.5. Emotional and Mental Health Risks

Adolescents with POMS face a substantial mental health burden, with a two times higher hazard for psychiatric co-morbidity, especially depression, compared with children without MS [33,34]. Studies utilizing structured psychiatric interviews have reported a higher prevalence of mood and anxiety disorders among POMS patients than in the general adolescent population [35]. Studies report that up to 50% of adolescents with POMS had significant depression and anxiety symptoms, though prevalence estimates vary by sampling frame (clinic-based vs. registry-based cohorts) and assessment instrument [10,34,36]. These mental health issues often develop after the onset of MS, rather than being pre-existing. A nationwide study in Denmark found that the incidence of psychiatric disorders spiked in the years following POMS diagnosis, with little evidence of elevated psychiatric morbidity before MS began [33]. This temporal association supports the idea that the stress and neurological effects of MS contribute to the development of mental health problems in youth: the data from Denmark (n = 212 POMS; 5:1 matched controls) showed no association between pre-MS psychiatric morbidity and later POMS, but post-onset hazard of any psychiatric comorbidity was ~2-fold (HR = 2.0, 95% CI 1.3–3.1) through age 20 [33]. This finding justifies early, routine mental-health screening after POMS diagnosis.

Depression in adolescents with POMS can stem from multiple factors. Psychologically, the challenges of coping with a chronic, unpredictable illness during formative years can trigger feelings of sadness, hopelessness, or low self-worth [37]. Adolescents may mourn the loss of a “normal” life or struggle with the limitations MS imposes, which can lead to depressive thoughts. Biologically, MS-related neuroinflammation and brain lesions might also play a role in mood regulation in certain neural circuits; atrophy of structures like the hippocampus and amygdala could contribute to mood symptoms [38,39]. Clinically, depressed mood in POMS patients is associated with worse adherence to treatment and poorer overall quality of life [10,40,41]. The General Health Questionnaire-12, frequently used for brief mental-health screening, has a three-factor structure (social dysfunction/anhedonia; depression/anxiety; loss of confidence), and in adult MS samples, elevations appear on the first and third factors more than the brief depression/anxiety factor, highlighting that subscale coverage and item content influence detection [8]. Pediatric settings should therefore prefer instruments that similarly capture social functioning, anhedonia, and self-efficacy alongside mood/anxiety, and should be cautious when interpreting negative screens from ultra-brief mood subscales.

Additionally, anxiety in POMS may manifest as excessive worry about relapses, disease progression, or social acceptance. Adolescents may experience intense health-related anxiety (e.g., fearing the next relapse or injection) and social anxiety (fearing judgment or exclusion by peers due to their illness). The period around diagnosis is especially anxiety-provoking, but many remain anxious chronically, bracing for MS “ticking time bombs” [42]. While adolescent studies document elevated anxiety symptoms, subdomain patterns may be heterogeneous; adult MS data indicate more pronounced social dysfunction and anhedonia and loss of confidence, with less consistent elevation on a brief depression/anxiety factor [8]. Chronic illness can impact self-esteem and self-concept: feeling consistently “behind” peers or unable to do what others can, may cause adolescents with POMS to feel inferior or flawed [43]. They might be self-conscious about symptoms (for example, worrying that using a cane or having cognitive lapses in class will make them look “stupid”). Clinical psychologists observe that such disruptions lead kids to feel “left out or self-conscious”, which can precipitate behavioral issues, anxiety, or depression [21]. Teenagers are developmentally primed to worry about future implications (college, relationships, etc.), so they may internalize the disease stress more than a younger child who is largely cared for by parents [44,45].

Among the psychological challenges in POMS, fatigue deserves special mention. Fatigue in MS is not just physical tiredness but a pervasive exhaustion that also has cognitive and emotional components: it is comparable to the fatigue observed in chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME), both in terms of its severity and symptoms [6,46,47]. Severe fatigue can mimic or exacerbate depression, or persist following partially resolved depression [48,49]. Youth may withdraw from activities and appear apathetic, which can be misinterpreted as depression (and in some cases coexists with it) [50]. Fatigue also fuels frustration and feelings of inadequacy, as adolescents cannot keep up with peers’ energy levels. In POMS, fatigue is highly prevalent and strongly correlates with lower quality of life [12]. One review identified fatigue as the number-one factor affecting mental health and daily functioning in POMS, present in 73% of the study cohort [12]. Effective management of fatigue (through energy conservation strategies, exercise, or medication) has been associated with improvements in mood and cognition [42].

In summary, the emotional toll of POMS is significant: adolescents often contend with symptoms of depression and anxiety, threats to self-esteem, and the psychological weight of fatigue and uncertainty. Untreated, these issues can undermine treatment adherence and overall outcomes [9]. Protective factors such as strong family support, a stable peer group, and good coping skills (e.g., trait optimism and resilience, problem-solving abilities) can buffer against depression, anxiety, and other emotional struggles. Nevertheless, the consensus in the literature is that adolescents with POMS are at high risk for mental health difficulties and should be proactively monitored. Clinical guidelines increasingly call for routine mental health screenings in MS care, and recent articles highlight the need to develop high-quality, comprehensive clinical practice guidelines with clear recommendations [51]. Early intervention–whether via counseling, psychiatric medications, or integrated behavioral health in the neurology clinic–can address emerging issues before they worsen.

1.6. Impact on Future Planning and Role Transitions

Adolescence is largely about planning for the future: considering higher education, careers, independent living, building relationships and starting a family. POMS can cast uncertainty on these plans and complicate major life transitions. The unpredictable nature of MS means adolescents must contemplate scenarios their healthy peers rarely consider [11]. For instance, a 17-year-old with POMS might worry whether they can handle college far from home if they need ongoing medical support, or whether an MS relapse might derail their exams or job training. This uncertainty can make long-term planning stressful. Studies have noted that adolescents with chronic illnesses often feel they have less control over their future and must “play it by ear” more than peers, which can impede the formation of concrete future goals [22].

Educational and vocational transitions are a particular area of concern. In practical terms, some POMS patients may take longer to finish high school or may opt for less demanding post-secondary paths because of health constraints. Population data suggests that individuals with POMS attain lower educational levels on average than those without MS or those who develop MS in adulthood [52]. Overall, POMS is associated with fewer years of formal education, lower income, and a higher likelihood of underemployment in adulthood [52]. Nationwide socioeconomic data indicate downstream functional burden. In Sweden (485 POMS vs. 4850 matched references), adults with POMS were less likely to attend university (OR 0.80, 95% CI 0.66–0.97), had lower annual earnings (difference −$1618 at ages 19–24 to −$10,683 at ages 45–54), and used more disability benefits (e.g., sickness-absence RR 3.06 at ages 19–24; disability-pension RR 1.43 at ages 45–54). These associations were stronger for earlier onset eras and consistent with improvements in therapy, but the gap persisted into midlife. Given the accelerated decline in processing efficiency observed in POMS vs. Adult-onset MS, these socioeconomic differences are plausibly mediated by cognitive and disease-activity trajectories, warranting integrated cognitive and vocational supports [29,52]. Career counseling and vocational rehabilitation services can be especially beneficial in high school and college to help adolescents with POMS identify suitable career paths and workplace accommodations, if needed.

MS can also impact social and role transitions such as moving out of the family home, forming romantic relationships, and taking on adult responsibilities. Parents of adolescents with serious chronic illnesses sometimes have difficulty “letting go,” delaying the transition of the child into independent adult roles [17,53]. Health care transition is another challenge: moving from pediatric-centered to adult care is a complex process and gaps in transitional care have been noted in POMS. Some adolescents disengage from regular medical follow-up when they age out of pediatric clinics, which can be dangerous if they stop medications [23,54,55]. Structured transition programs are needed to ensure continuity of care and to address the psychosocial aspects of becoming one’s own health advocate in adulthood.

In this context, it is essential to recognize that the socioeconomic impacts of POMS are not solely determined by disease biology but are substantially shaped by social determinants of health and policy context. In countries with universal healthcare, robust disability support systems, and inclusive education policies, many adverse outcomes can be mitigated through early intervention, academic accommodations, and vocational rehabilitation. Conversely, in settings with limited social safety nets, the same disease burden can lead to compounded disadvantage. The Swedish data cited here [29,52] reflect a high-resource context; outcomes in low- and middle-income countries may differ substantially and warrant dedicated study.

To facilitate comparison across the growing but heterogeneous literature,

Table 1. Summary of Key Studies on Psychosocial and Cognitive Outcomes in Adolescents with POMS.

Study	Study Design	Sample	Main Findings	CEBM Level *
Barlow-Krelina et al., 2021 [5]	Cross-sectional case–control (computerized neurocognitive battery vs. healthy controls)	POMS n = 65 (8–29 y); Controls n = 76	• Lower overall performance in POMS vs. controls; impairments in accuracy (executive, episodic memory, complex cognition) even after adjusting for response speed • Slower overall response time in POMS	3b (individual case-control study)
Boesen et al., 2018 [33]	Nationwide population-based cohort with nested case–control using Danish registers	POMS n = 212; age- and sex-matched controls 5:1; followed till 20y	• No association with psychiatric morbidity before POMS onset • After onset, hazard of psychiatric morbidity approximately doubled (HR ≈ 2.0, 95% CI 1.3–3.1).	2b (individual cohort study)
Boyd & Macmillan, 2005 [11]	Qualitative study (interviews)	n = 12; ages 8–18	• Explores lived experiences of children/adolescents with POMS	Qualitative
Charvet et al., 2016 [35]	Cross-sectional clinical sample	n = 140; ages 5–18 (MS or Clinically Isolated Syndrome (CIS))	• 33.1% had ≥1 clinically significant BASC-2 scale • Most common: attention problems, somatization, anxiety • Cognitive functioning predicted a clinical problem.	4 (cross-sectional study)
Gur et al., 2025 [31]	Cohort observational (cross-sectional neuropsychological and mood assessment)	POMS n = 31 (20F); mean age 15.8 y	• Cognitive Impairment in 26%; Personal-Cognitive-Decline (Personal-CD) in 45% (73% among high-achievers) • Cognitive Impairment associated with disability; Personal-CD associated with depression, not disease severity.	4 (cross-sectional study)
Hamama et al., 2024 [53]	Preliminary longitudinal cohort (3 waves; multilevel causal mediation)	Parents of youth with POMS: n = 36 (clinic sample)	• Perceived social support (PSS) from friends at T1 → ↑ coping flexibility at T2 → ↓ psychological distress at T3 • Mothers reported higher PSS from friends than fathers • Overall levels of PSS, coping flexibility, life satisfaction, and distress were stable over 12 months.	2b (individual cohort study)
Hosseini et al., 2014 [30]	Longitudinal growth-curve analysis	POMS n = 35; repeated cognitive testing	• Younger age at onset predicted steeper decline on SDMT and Trail-making test over time • Baseline IQ and social status did not moderate decline.	2b (individual cohort study)
Julian et al., 2013 [27]	Multicenter cross-sectional analysis (US Pediatric MS Centers)	MS n = 187; CIS n = 44; mean age 14.8 y; disease duration ≈1.9 y	• Cognitive impairment in 35% of MS and 18% of CIS • Most frequent deficits: fine motor/pegboard, visuomotor integration, speeded processing • Independent predictors: MS diagnosis (OR ≈ 3.6) and higher disability.	4 (cross-sectional study)
Lulu et al., 2014 [41]	Cross-sectional study: prospectively enrolled POMS patients (self/parent surveys, clinical data)	n = 30; ages 12–23 (mean 15.8); 53% female; 47% Hispanic	• Non-adherence (missing ≥20% DMT doses in past month) in 37%; most common reason was forgetting (50%). • Higher disability associated with lower QoL and healthcare skills; higher SDMT associated with greater transition readiness and healthcare skills.	4 (cross-sectional study)
Masciulli et al., 2025 [56]	Randomized, double-blind, multicenter pilot trial (specific vs. non-specific home-based attention training)	22 POMS (9–18 y)	• Primary outcome: SDMT improved in the specific-training group (31.2→42.4 at ~3 months; p = 0.043). • No benefit on other cognitive measures; feasibility demonstrated.	2b (individual randomized pilot trial)
Mckay et al., 2019 [29]	Nationwide longitudinal cohort (Swedish MS Registry); mixed-effects models, repeated SDMT	5704 adults with MS (300 POMS); 46,429 SDMTs; analyzed ages 18–55; median follow-up 3.0 y	• POMS had lower SDMT than AOMS (β −3.59) and faster decline (β −0.30). • Higher odds of ever meeting cognitive impairment vs. Adult-Onset MS (OR 1.44).	2b (individual cohort study)
Mckay et al., 2021 [52]	Register-based matched cohort (10:1) of socioeconomic outcomes	POMS n = 485 vs. matched references n = 4850; outcomes analyzed across ages 19–54	• Lower odds of university attendance in POMS (OR 0.80, 95% CI 0.66–0.97). • Lower annual earnings (−$1618 to −$10,683 across age bands). • Higher disability benefits: sickness-absence RR 3.06 (ages 19–24); disability-pension RR 1.43 (ages 45–54).	2b (individual cohort study)
Wallach et al., 2020 [4]	Multicenter cohort (US Network of Pediatric MS Centers); baseline + serial SDMT	Assessed: 955; included: POMS n = 500, CIS n = 116; mean disease duration 3.0 y; follow-up mean 1.8 y	• Impaired processing speed at baseline in 23.4% (POMS) and 16.4% (CIS). • Clinically meaningful SDMT decline in 14.1% over ~1.8 y; older age at onset and male sex predicted decline. • Relapse or recent steroids → transient SDMT worsening.	2b (individual cohort study)
Weisbrot et al., 2014 [7]	Clinic-based cross-sectional case series with structured psychiatric interviews and neuropsychological testing	n = 45; ages 8–17; non-consecutive referrals for psychiatric evaluation	• Most frequent diagnoses: anxiety (n = 15), ADHD (n = 12), mood disorders (n = 11). • Cognitive impairment in 80% with a psychiatric diagnosis vs. 55% without (p = 0.08); highest with mood/anxiety (p = 0.05).	4 (cross-sectional study/case series)

* Levels of evidence, per the Centre for Evidence-Based Medicine, based in the Nuffield Department of Primary Care Health Sciences at the University of Oxford.

summarizes the principal studies mentioned in the current review, all of which examined psychosocial and cognitive outcomes in adolescents with POMS. For each study, design, sample characteristics, main findings, and Oxford Centre for Evidence-Based Medicine (CEBM) level of evidence are listed. The table highlights that most available evidence derives from fairly small cross-sectional cohorts or registry studies, with limited longitudinal and high-quality research to date.

2. Discussion

Adolescents with POMS face a multifaceted burden that spans psychological, cognitive, and social domains. Although neurological disability may appear mild early in the disease, psychosocial morbidity is often profound and should be considered an equally critical clinical outcome. The evidence reviewed illustrates that POMS can adversely affect quality of life, mental health, schooling, self-image, and relationships. The diagnosis of MS during adolescence often triggers acute distress and a steep learning curve as families adjust to a new reality. Over the long term, the disease interrupts normative development, limiting autonomy, challenging identity formation, isolating patients from peers, impairing cognitive functions, and elevating the risk of depression and anxiety. These issues occur at a life stage when emotional resilience and social support are still developing, potentially making the impact more profound than if the same illness occurred in adulthood. A teenager with MS might appear “fine” to casual observers because they can engage in routine activities, but beneath that surface, they may be struggling with invisible physical symptoms and pain along with memory problems, fatigue, sadness, or loneliness that significantly undermine their quality of life.

A striking finding of this review is the relative dearth of psychological or cognitive health interventions that have been specifically tested in POMS. As summarized in Table 1, the evidence base remains limited and heterogeneous, underscoring the need for more longitudinal and intervention studies. Collectively, multicenter clinical and nationwide registry studies converge on (i) processing-speed vulnerability with faster decline in POMS than Adult-Onset MS, (ii) additional accuracy-based deficits beyond speed when assessed with computerized batteries, (iii) post-onset psychiatric risk, and (iv) measurable socioeconomic impact by early adulthood [4,5,29,33,52]. The absence of POMS-specific psychosocial intervention trials remains a critical gap. Existing research supports early screening and accommodations (during relapses and school transitions) while such trials are developed, and care guidelines call for multidisciplinary support (addressing home, school, and peer domains) [9], but there is little empirical research evaluating targeted therapies in this demographic. A 2010 review stated that “specific interventions for pediatric MS are lacking” and urged development of rehabilitative strategies tailored to young patients [32]. As of 2025, this gap remains largely unfilled: I found no published randomized controlled trials of psychological therapy (such as cognitive-behavioral therapy or support programs) for adolescents with POMS. Similarly, no rigorous studies of interventions for mood, anxiety, or psychosocial functioning in POMS were identified. The lone exception in the literature is in the realm of cognitive rehabilitation: recently, a pilot multicenter RCT investigated a home-based computerized cognitive training program for attention in POMS patients [56]. The preliminary findings suggested benefit, as the cognitive training led to improvements in attention measures in the treatment group. This study provides proof of concept that cognitive deficits in POMS can be targeted and mitigated to some extent. However, it was a small pilot that involved 22 patients. Where direct adolescent data were unavailable, findings from adult MS or other pediatric chronic conditions were used for context. These cross-population comparisons should be interpreted cautiously, as developmental and disease-course differences may influence psychosocial outcomes.

The scarcity of intervention research in POMS likely reflects multiple factors: the rarity of the condition (making large trials difficult), the historical focus on acute and physical management over long-term psychosocial care, and perhaps an assumption that adult MS interventions could simply be extrapolated. Unfortunately, the developmental nuances mean that adult interventions cannot be applied wholesale to younger patients without adaptation [57]. However, the broader literature on pediatric chronic illness provides a roadmap of promising approaches that could be tailored to POMS. Below, I highlight interventions with strong evidence either in adult MS and in adolescent chronic illness populations that represent logical candidates for adaptation to POMS (summarized in

Table 2. Evidence-Informed Psychosocial and Cognitive Interventions for Adolescents with POMS *.

Intervention Modality	Evidence in Adult ms	Evidence in Adolescents with Chronic Illness
Cognitive-Behavioral Therapy (CBT)	- Efficacious for depression & anxiety in MS [58] - MS-specific internet CBT reduced depressive symptoms in a trial [59]	- Feasible and effective for teens with diabetes; improved psychosocial outcomes including stress and self-efficacy as well as quality of life [60] - Shown to reduce depressive symptoms in chronic conditions (e.g., asthma, chronic pain) [61,62]
Mindfulness-Based Interventions (MBI)	- Web-based MBI significantly improved depression and quality of life in MS [63] - MB Stress Reduction (MBSR) pilot in MS showed benefits for fatigue, sleep, and subjective cognitive symptoms [63,64,65]	- Promising for coping with emotional distress and chronic illness symptoms in teens [66] - Found to be acceptable in the adolescent population [66]
Peer Support (Support Groups, Camps, Retreats)	- Reports of improved coping, psychological well-being, and quality of life in adult MS support group participants [67] - MS societies facilitate peer mentor and support programs, communities, meet-ups and camps, though these have not been rigorously evaluated [68]	- Peer group interventions improved coping and QoL in teens with chronic illness [69] - Disease-specific camps (e.g., diabetes camp) increase self-esteem, social skills, and illness knowledge [70,71]
Exercise and Fatigue Management	- Regular exercise in MS improves fatigue and mood [72] - Group or individual fatigue management programs reduced fatigue impact in trials [73,74,75]	- Exercise programs for teens with chronic illnesses show enhanced mood, psychological symptoms, and energy [76,77]
Cognitive Rehabilitation	- Memory and attention training in MS can yield cognitive improvements including in memory, attention, and processing speed [78] - Cognitive rehabilitation therapy showed alleviation of subjective cognitive complaints [65]	- In POMS specifically, a pilot computer-assisted attention training showed preliminary benefits [56] - There exist protocols for cognitive rehabilitation for adolescents who suffer from brain injury but published work remains limited [79,80]
Family Programs and Psychoeducation	- Family therapy is not well-studied in adult MS [81] - Psychoeducational programs increase patient knowledge and may reduce anxiety and stress [82]	- Parent-focused psychological interventions in pediatric chronic illness improve parent mental health and indirectly child outcomes, though quality of evidence is low [83] - While outcomes are mixed, psychoeducational interventions, especially those using family-focused or tech-supported delivery, can improve disease management and psychosocial outcomes in chronically ill adolescents [84]
Art Therapy and Mindfulness-Based Art Therapy	- Small RCTs and qualitative studies show improved mood and self-efficacy, reduced fatigue, and enhanced emotional expression [85,86] - May be effectively delivered via video-conference tools [87]	- Used in adolescent cancer, diabetes, and arthritis to reduce anxiety and improve coping and quality of life [88] - Enhances emotional expression, communication, and self-esteem [89]

* Only the cognitive-rehabilitation modality has been empirically tested in POMS; other evidence is extrapolated as indicated.

). The data illustrate that modalities like CBT, mindfulness training, peer support groups, art therapy, structured exercise programs, cognitive rehabilitation techniques, and family-centered therapy have shown positive impacts in related contexts. While this review proposes an integrative intervention model, it should be interpreted as conceptual and hypothesis-generating, not as evidence of proven efficacy. Empirical validation through pilot and randomized trials remains essential.

These findings underscore that we have effective, if currently not validated in POMS, tools at our disposal—what remains is to customize and rigorously evaluate them for adolescents with POMS. A developmentally tailored approach means recognizing that adolescents are not “small adults” or “big children,” but have unique needs: they are in a critical phase of identity development, they crave autonomy but still need guidance, generally they are tech-savvy and peer-oriented. Therefore, interventions should be engaging (perhaps gamified or interactive), offer some degree of independence (e.g., self-guided components) while also providing support (therapist-guided or group check-ins) and addressing age-appropriate themes (such as navigating school and relationships with MS). Involving youths in the design of interventions through a participatory approach to intervention development [90] can ensure the content and delivery resonate with them [91].

Moreover, any psychosocial program for POMS should ideally be multidimensional. The challenges are interconnected (cognitive issues affect academics, which in turn may affect self-esteem; fatigue affects mood which affects social life; parental distress contributes to the adolescent’s overall emotional burden, etc.). Thus, a combined intervention strategy may work best. For instance, a comprehensive program for adolescents with POMS could include: weekly group CBT, MBSR or art therapy sessions (covering mood, adjustment and self-expression issues), a concurrent parent session every other week (to work on family dynamics and education), a physical activity component or personal training sessions to encourage appropriate exercise, peer integration sessions, and cognitive strategy training or rehabilitation provided by a neuropsychologist. CBT can be adapted for adolescents with POMS by focusing on illness-related thoughts, balancing disease management with enjoyable activities, and involving families to support coping, drawing from effective strategies used in conditions like diabetes and inflammatory bowel disease [62]. Such a program, as illustrated in Figure 2, could target the whole constellation of issues and be delivered either in-person (perhaps a summer intensive program) or via telehealth for wider reach. Table 2 summarizes the evidence base informing each component of the integrated intervention model depicted in Figure 2. As explained, cognitive rehabilitation provides the strongest direct evidence [56], while complementary modalities including CBT, mindfulness and art therapy, parent psychoeducation, exercise/fatigue management and peer support are extrapolated from adult MS and other chronic-illness contexts, and have not been validated in POMS.

This figure illustrates a proposed, novel, comprehensive intervention program tailored to the psychosocial, cognitive, and developmental needs of adolescents with POMS. The framework outlined represents a synthesis of best practices from adjacent fields, pending direct testing in adolescents with POMS. The model includes weekly group-based therapy, with CBT as the primary modality, supported by mindfulness or art therapy, concurrent parent psychoeducation, physical activity programming, peer integration sessions, and cognitive rehabilitation. This multidimensional approach targets emotional well-being, cognitive functioning, physical vitality, and social connectedness. Evaluation metrics should include psychiatric symptoms, school functioning, treatment adherence, relapse rates, and patient-reported outcomes.

This visualized (Figure 2) multicomponent program proposes weekly group-based cognitive behavioral therapy (CBT) as the core modality targeting the psychological needs of adolescents with POMS. Mindfulness or art-therapy group sessions would complement CBT by enhancing emotional regulation, fatigue management, and self-expression, addressing domains of anhedonia and social withdrawal identified in MS mental-health research [8,63,84]. Concurrent parent sessions with structured psychoeducation could aim to improve caregiver coping, reduce over-protection, and promote consistent family communication about disease management, which have been identified as key issues [11]. A physical-activity component should be adapted from fatigue-management and exercise trials in MS [73,74,75] and aim to reduce perceived fatigue, improve mood, and support neurocognitive functioning. Peer-integration and mentorship sessions would foster social connectedness and belonging, targeting the social-dysfunction dimension of distress reported in MS [8]. Finally, cognitive-rehabilitation modules are essential to address processing-speed and attention difficulties while reinforcing self-efficacy in academic contexts [65,78]. From a health-promotion standpoint, these interventions represent tertiary-level strategies aimed at minimizing its psychosocial sequelae, restoring function, and promoting well-being and participation across developmental domains.

The intervention can be delivered in-person or via telehealth [56], ensuring accessibility for geographically dispersed pediatric MS populations. Outcome metrics should include standardized measures of mental health (depression, anxiety, self-efficacy, social participation), cognitive functioning, fatigue, school engagement, quality of life, treatment adherence, and relapse frequency. Any intervention research in this field should track not just psychiatric symptoms, but also functional outcomes (for instance, school attendance, grades, subjective assessments) and MS-related outcomes (for instance, adherence to medication, relapse rates, self-rated symptoms, and disability progression). Clinically, routine screening for social participation, anhedonia, and self-efficacy is warranted in addition to mood/anxiety [8], with referral pathways that include peer-support/participation interventions and confidence-building psychoeducation, not only depression/anxiety management. Research suggests that psychosocial interventions for adolescents with chronic illnesses can be delivered over 8–12 weeks with weekly sessions or condensed into 10–14-day camp formats, both effective for improving mental health and social outcomes [92,93]. Furthermore, to be inclusive, the intervention should use culturally sensitive language and consider intersectional identities (e.g., race, socioeconomic status), ensuring accessibility for diverse adolescents with POMS [94]. While resource-intensive, the payoff in terms of preventing long-term psychosocial disability could be significant.

It is worth noting that the current lack of interventions is part of a larger issue. Historically, health policy and care systems have not adequately addressed the needs of both pediatric and adult MS patients and their families [6,95]. Gaps exist in providing integrated care that covers mental health, cognitive and psychosocial support along with traditional care. Closing these gaps will require advocacy and demonstrating through research that these interventions make a difference. If, for example, a trial shows that a CBT program reduces depression and improves school performance in POMS, that evidence can drive insurance coverage decisions and funding for POMS psychosocial services. This paper contributes to synthesizing what is known of those needs, and the evidence points to a high burden and an urgent need for action.

This narrative review is limited by the scarcity of empirical research specifically targeting adolescents with POMS. Much of the evidence summarized was extrapolated from adult MS or other chronic-illness populations. No formal quality appraisal or quantitative synthesis was conducted, raising potential for selection and publication bias. Reported estimates and findings should therefore be interpreted as indicative rather than definitive. As a narrative synthesis, this review may over-represent English-language studies; gray literature and non-English cohorts were not included.

2.1. Future Directions

Future research should prioritize designing and testing age-appropriate therapies that not only target psychological symptoms but also promote academic retention, social functioning, and smooth transitions into adulthood in adolescents with POMS. The intervention should use culturally sensitive language and consider intersectional identities (e.g., race, religious and cultural differences, socioeconomic status), ensuring accessibility for diverse adolescents with POMS. Interventions should be rigorously evaluated through well-designed pilot studies and subsequently randomized controlled trials, and outcomes should include both clinical and functional metrics, such as school engagement, quality of life, and treatment adherence. National MS advocacy groups and digital tools, such as patient registries and telehealth platforms, can address research barriers posed by the rarity of POMS and the geographical dispersion of patients, facilitating multi-site trials and access to interventions. Age-stratified analyses within adolescence (early vs. mid vs. late) are needed to determine whether diagnosis timing differentially affects identity consolidation, peer relationships, and educational trajectories. Such developmental specificity would allow interventions to be tailored to cognitive and psychosocial maturity. Neurobiological studies linking inflammatory markers, lesion location, and psychiatric symptoms in POMS could clarify mechanistic pathways and inform targeted pharmacologic interventions.

Integrated care models must also be developed, embedding psychologists or counselors within POMS teams to routinely screen for and address emotional and cognitive needs. Establishing clinical guidelines for psychosocial care in POMS, including baseline neuropsychological assessments and annual mental health screenings, would promote standardized, proactive care. A combination approach pairing therapy, exercise, school support, and family counseling may offer synergistic benefits even when individual components have modest effects. Research may also explore resilience and empowerment: peer-led initiatives and adolescent involvement in MS advocacy can foster resilience and reduce stigma. Including caregiver support such as stress-management programs for parents can improve the adolescent’s home environment and coping capacity. Finally, longitudinal studies are essential to determine whether early psychosocial interventions yield long-term advantages in educational, occupational, and mental health outcomes as these adolescents transition into adulthood.

As such, priority areas include: (1) creation of shared multicenter registries integrating psychosocial metrics and adoption of standardized neuropsychological batteries to harmonize data; (2) longitudinal, multidisciplinary monitoring of mood and cognition that integrates the concept of Personal Cognitive Decline and integrated patient-caregiver support as part of standard care in POMS; and (3) randomized trials of psychosocial interventions such as the one proposed here.

2.2. Conclusions

By bridging developmental psychology and MS research, this review offers a novel, clinically actionable tertiary health promotion framework that translates psychosocial and cognitive insights into concrete strategies for monitoring and intervention in POMS.

Pediatric-onset MS poses challenges that extend well beyond the neurological realm. While disease-modifying therapies can control inflammation and delay physical disability, there is a critical psychosocial dimension of POMS that remains undertreated. We must develop and deploy interventions that address the mind, brain, and social context to improve outcomes for the young patients. The literature reviewed makes a case that targeted interventions are urgently warranted. Psychosocial and cognitive sequelae are central to POMS outcomes and warrant routine monitoring. Integrated, developmentally sensitive interventions grounded in CBT, mindfulness, family, and cognitive-rehabilitation principles should become standard adjuncts to pharmacologic care. Collaboration across neurology, psychology, and education sectors is essential for sustainable improvement.

By investing in developmentally appropriate supportive care through research, clinical innovation, and policy changes, we can help adolescents with POMS navigate their illness and thrive. This endeavor will ultimately fulfill a central goal of pediatric MS care: not just controlling MS but also safeguarding the psychological well-being and future potential of the youth who live with this challenging condition.