Abstract
Dealing with paediatric-onset multiple sclerosis is particularly challenging for the young patients and their families, due to its unpredictable symptoms and uncertain outcome. This review aimed at synthesising the qualitative evidence regarding the perspectives about paediatric-onset multiple sclerosis, as expressed by the patients and/or their parents. A literature search was conducted on PubMed and CINAHL. The advanced multi-field search allowed to perform an abstract/title search in both databases, using keywords, combined through Boolean operators. Additional search strategies were adopted: searching the reference list of the selected papers; searching for key authors in the field. All the relevant papers were thoroughly revised using The Joanna Briggs Institute’s data extraction form for qualitative evidence as a guidance. Eight papers were selected. The analysis of these papers allowed to identify some common issues pertaining paediatric-onset multiple sclerosis: (1) onset of symptoms, (2) diagnostic process, (3) reaction to the diagnosis, (4) management and acceptance of multiple sclerosis. The burden of multiple sclerosis was confirmed. However, the young patients and their parents can adjust to the disease. Both the community and the health care professionals must strive to prevent the families dealing with multiple sclerosis from experiencing solitude and rejection.
Highlights
Selection of the Papers Inclusion criteria: original qualitative studies; written in English; any date of publication; investigating the perceptions, perspectives, lived experience regarding any aspect related to paediatric multiple sclerosis, among the affected children/young adults with a clear paediatric onset and/or their parents; any sex and ethnicity
The control of relapses may acquire further importance in the COVID-19 pandemic era, in light of the speculation of a higher risk of exacerbation following contraction [43]. This scoping review allowed the identification of core issues pertaining paediatriconset MSMultiple sclerosis (MS)
The physical, psychological, social and financial burden of the disease was confirmed. Both the young persons with MS and their parents have the potential to adjust to the disease
Summary
MS can affect a variety of functions, causing heterogeneous symptoms, many of which are highly a-specific [3]: weakness, impaired ambulation, reduced vision, difficulties in maintaining balance, sexual dysfunctions, etc. Apart from the physical symptoms, cognitive-behavioural disturbances (impaired memory, reduced speed of information processing, depression, bipolar disorder, to name just a few) are not uncommon [3]. As suggested by the name, RR-MS is characterized by an alternation of relapses (new or worsening symptoms, lasting more than 48 h, impairing one or more functions) and periods of remission, namely relative stability [5]. There is no way to accurately predict the number of relapses and the general course of the disease, the latter being characterized by high levels of uncertainty and heterogeneous features among the affected people. It should be noted that the disease-modifying therapies (DMTs), such as fingolimod, natalizumab and rituximab, may lead to a better disease control and a reduced relapse rate in paediatric MS [8]
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