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

Ghai, Shashank; Kasilingam, Elisabeth; Lanzillo, Roberta; Malenica, Maša; Pesch, Vincent Van; Burke, Niamh; Carotenuto, Antonio; Maguire, Rebecca

doi:10.3390/children8060445

Cited by 7 publications

(12 citation statements)

References 57 publications

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“…Indeed, stimulating the patients to accept their emotional responses to health-related limitations, while preserving their social and relational resources, seems key to the preservation of an adequate QoL over time. In particular, a recent review highlighted that an aspect that may reduce emotional distress in children and adolescents with MS is encouraging their own involvement during the diagnosis and decision-making process, as well as the relevance of an increased educational support by means of both increased awareness and disease specific accommodations [ 28 ].…”

Section: Discussionmentioning

confidence: 99%

Quality of Life Changes in Early-Onset Multiple Sclerosis: A 4-Year Follow-Up Study

Rosa

Petracca

Carotenuto

et al. 2022

JCM

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This study investigates longitudinal changes in health-related quality of life (HRQoL) in early-onset multiple sclerosis (MS) patients and explores the impact of disease activity (relapses) on such changes. People with MS (PwMS) onset between 12 and 25 years of age were followed longitudinally. At baseline and at year 4, patients were asked to fill the Paediatric Quality of life inventory (PedsQL). Demographic and clinical features were collected at both time points. Longitudinal within-group comparison of HRQoL total score and sub-scores was performed via paired samples t-test. The effect of relapses on the HRQoL changes over time was explored via linear mixed-effects analysis. No longitudinal changes were observed in the overall PedsQL score, nor in the physical, school and psychological functioning. An increase in the social functioning subscale (p < 0.001) and a decrease in the emotional subscale (p = 0.006) were observed. The change in social functioning, but not the one in the emotional subscale, was affected by the occurrence of relapses (p = 0.044). In conclusion, stimulating the patients to accept their emotional responses to health-related limitations, while preserving their social and relational resources seems key to the preservation of an adequate QoL over time in juvenile-onset MS.

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Section: Discussionmentioning

confidence: 99%

Quality of Life Changes in Early-Onset Multiple Sclerosis: A 4-Year Follow-Up Study

Rosa

Petracca

Carotenuto

et al. 2022

JCM

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“…POMS can be considered an "orphan" disease to all intents and purposes. Several studies have shown that there are still many unmet needs reported by children and adolescents affected by POMS, resulting not only from the physical and psychological effects of the disease in this specific age group but also from a lower availability of diagnostic and therapeutic information compared to the adult population (39). A recent meta-analysis analyzed 26 studies, including over 2,000 patients with POMS highlighting a profound negative impact on domains such as school performance, sociability and physical performance (39).…”

Section: Unmet Needs: Fears and Confusions Of Pomsmentioning

confidence: 99%

“…Several studies have shown that there are still many unmet needs reported by children and adolescents affected by POMS, resulting not only from the physical and psychological effects of the disease in this specific age group but also from a lower availability of diagnostic and therapeutic information compared to the adult population (39). A recent meta-analysis analyzed 26 studies, including over 2,000 patients with POMS highlighting a profound negative impact on domains such as school performance, sociability and physical performance (39). Specifically, the lack of adequate knowledge of the disease has been reported as one of the main barriers experienced by patients with POMS in carrying out their daily activities, with important repercussions on the possibility of social integration.…”

Section: Unmet Needs: Fears and Confusions Of Pomsmentioning

confidence: 99%

Aging in multiple sclerosis: from childhood to old age, etiopathogenesis, and unmet needs: a narrative review

Capasso,

Virgilio,

Covelli

et al. 2023

Front. Neurol.

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Multiple sclerosis (MS) primarily affects adult females. However, in the last decades, rising incidence and prevalence have been observed for demographic extremes, such as pediatric-onset MS (POMS; occurring before 18 years of age) and late-onset MS (corresponding to an onset above 50 years). These categories show peculiar clinical-pathogenetic characteristics, aging processes and disease courses, therapeutic options, and unmet needs. Nonetheless, several open questions are still pending. POMS patients display an important contribution of multiple genetic and environmental factors such as EBV, while in LOMS, hormonal changes and pollution may represent disease triggers. In both categories, immunosenescence emerges as a pathogenic driver of the disease, particularly for LOMS. In both populations, patient and caregiver engagement are essential from the diagnosis communication to early treatment of disease-modifying therapy (DMTs), which in the elderly population appears more complex and less proven in terms of efficacy and safety. Digital technologies (e.g., exergames and e-training) have recently emerged with promising results, particularly in treating and following motor and cognitive deficits. However, this offer seems more feasible for POMS, being LOMS less familiar with digital technology. In this narrative review, we discuss how the aging process influences the pathogenesis, disease course, and therapeutic options of both POMS and LOMS. Finally, we evaluate the impact of new digital communication tools, which greatly interest the current and future management of POMS and LOMS patients.

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“…Additionally, the psychological consequences of POMS include feelings of incompetence and lower self-confidence, and social and physical anxiety, particularly when it occurs at a young age ( Carroll et al, 2016 ; Payamani et al, 2016 ). As such, POMS has a pronounced negative effect on school-related activities ( Carroll et al, 2016 ; Ghai et al, 2021 ) and can lead to a decreased quality of life ( Storm van's Gravesande et al, 2019 ; Omranifard et al, 2023 ).…”

Section: Introductionmentioning

confidence: 99%

Well-being among parents of youth with multiple sclerosis: a preliminary longitudinal study

Hamama,

Hamama-Raz,

Lebowitz-Sokolover

et al. 2024

Front. Psychol.

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BackgroundIn 2021, the annual rate of pediatric-onset multiple sclerosis (POMS) in Israel among children was 1.5, and 4.5% among youth aged 14–18, out of a total of 5,000 multiple sclerosis cases nationwide. Children diagnosed with POMS often display various deficiencies across psychological, cognitive, sensory, and physical areas. As such, POMS poses significant challenges for parents’ well-being, with heightened emotional, financial, and physical strains linked to both the immediate and long-term care requirements of their children. In this preliminary study, we examined changes over three time-points in two measures of well-being: satisfaction with life and psychological distress. In addition, the role of perceived social support (PSS) and coping flexibility was examined through a multilevel causal mediation model which suggested that PSS 1 month post-diagnosis would predict coping flexibility at 6 months post-diagnosis, which in turn would predict parents’ life satisfaction and psychological distress at 12 months post-diagnosis.MethodsThe research was conducted at a tertiary university-affiliated children’s hospital in central Israel. Preliminary data were obtained from 36 parents at three times-points. Participants provided demographic information and filled out the following standardized self-report questionnaires: the Diener’s Satisfaction with Life Scale, Kessler’s inventory for measuring psychological distress (K6), the Multidimensional Scale of Perceived Social Support (MSPSS), and the Perceived Ability to Cope with Trauma Scale (PACT) for measuring coping flexibility.ResultsOver time (12 months), parents reported stable levels of PSS, coping flexibility, satisfaction with life, and psychological distress. In addition, mothers reported significantly greater PSS from friends than did fathers. Regarding the causal mediation model, greater PSS from friends at T1 was significantly associated with an increase in coping flexibility from T1 to T2. In turn, an increase in coping flexibility was associated with a decrease in psychological distress from T1 to T3 (after controlling for PSS). Yet the causal mediation path via coping flexibility to satisfaction with life was not significant.ConclusionThis preliminary study emphasizes the important role of both PSS and coping flexibility for the well-being of parents whose children are affected by POMS, a subject that merits heightened consideration among healthcare professionals dealing with long-term chronic diseases.

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

Cited by 7 publications

References 57 publications

Quality of Life Changes in Early-Onset Multiple Sclerosis: A 4-Year Follow-Up Study

Quality of Life Changes in Early-Onset Multiple Sclerosis: A 4-Year Follow-Up Study

Aging in multiple sclerosis: from childhood to old age, etiopathogenesis, and unmet needs: a narrative review

Well-being among parents of youth with multiple sclerosis: a preliminary longitudinal study

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