Lack of information about multiple sclerosis in children can impact parents' sense of competency and satisfaction within the couple

Uccelli, Michele Messmer; Traversa, Silvia; Trojano, María; Viterbo, Rosa Gemma; Ghezzi, Angelo; Signori, Alessio

doi:10.1016/j.jns.2012.10.010

Cited by 23 publications

(37 citation statements)

References 29 publications

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“…Parents of children with any chronic illness tend to have higher rates of anxiety, stress, and depression compared to parents of healthy children. 34,35 This stress may be attributed to finding the best care for their child, disruption of daily routines, financial impact of a chronic illness, and the unknown disease course. 35,36 Parents of children with multiple sclerosis carry an emotional burden that warrants attention during diagnosis and treatment.…”

Section: Impact On the Child And Familymentioning

confidence: 99%

Insights and Recommendations From Parents Receiving a Diagnosis of Pediatric Multiple Sclerosis for Their Child

2019

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Forty-two parents of 41 children reported on their experiences receiving a diagnosis of pediatric-onset multiple sclerosis for their child through semistructured phone interviews. Time to diagnosis ranged from 8 hours to 16 years, with the mean age at diagnosis of 13.7 years. The most common initial symptoms included visual disturbances and numbness. The mean number of medical visits to receive a diagnosis was 3.6. Parents reported feeling frustrated and overwhelmed during the diagnosis process, as well as shocked when told their child had multiple sclerosis. Parents emphasized the need for more awareness of pediatric-onset multiple sclerosis. Numerous parents reported encountering physicians who believed multiple sclerosis did not occur in childhood, contributing to a longer time to diagnosis. Parents preferred physicians first share the diagnosis with the parents without the child present. Finally, parents appreciated when physicians provided a variety of resources to help them cope with the diagnosis.

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Section: Impact On the Child And Familymentioning

confidence: 99%

Insights and Recommendations From Parents Receiving a Diagnosis of Pediatric Multiple Sclerosis for Their Child

2019

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“…Three studies compared outcomes among patients and healthy controls(53-55), reporting reduced QoL for children with MS; the reductions were significant in two studies. One of these studies compared the selfreported QoL scores of patients with those of their parents, while another only presented parentreported scores (53,55). All of the studies concluded that the QoL of both patients and their families is negatively impacted by the physical and cognitive manifestations of MS (53)(54)(55).…”

Section: Five Studies Reported Qol Outcomes Among European Patients Wmentioning

confidence: 99%

A systematic literature review of the burden of pediatric multiple sclerosis in North America and Europe

Lb¹,

Goble²,

Kroes³

et al. 2019

Preprint

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Background: Multiple sclerosis (MS) is a chronic neurodegenerative condition that severely impacts patient functioning and quality of life (QoL). Onset of MS typically occurs in adults and evidence is growing for onset in children and adolescents. Several studies describe the clinical burden of pediatric MS; however, to date, no systematic literature review summarizing the clinical burden of pediatric MS has been published. Objective: To conduct a systematic literature review to identify published data on the epidemiology, disease characteristics, QoL, and economic burden of pediatric MS in North America and Europe. Methods: Systematic searches were conducted in Ovid MEDLINE®, Embase, and Cochrane library to identify studies that enrolled patients with pediatric MS and reported at least one outcome related to the epidemiological, humanistic, and economic burden of pediatric MS. Only English-language studies were included. Results: In total, 7,447 unique records were identified, of which 103 met the study’s inclusion criteria. Of the included articles, 9 reported incidence and prevalence, 39 reported relapse rates, 15 reported QoL, 22 reported fatigue, 37 reported cognitive function, and 17 reported school performance. Incidence of pediatric MS ranged from 0.30 to 2.64 per 100,000 person-years, with few studies suggesting that incidence may increase with age. Prevalence was reported as high as 14.6 cases per 100,000 persons in the USA and 9.6% of all MS patients in European countries. The range of annualized relapse rates was similar across countries, at 0.36-2.76 in North America and 0.65-1.11 in European countries. Patients with pediatric MS experienced reduced QoL compared to healthy controls. Patients experienced reduced diminished cognitive functioning, worse school performance and increased fatigue. Limited information was identified for the mortality and economic burden of pediatric MS. Conclusions: Several studies describe the clinical burden of pediatric MS. Although incidence and prevalence rates for the disease are relatively low, the rate of relapse and burden to patients is considerable. Further studies are required to address gaps in the understanding of prognostic factors for relapse and the impact of QoL, fatigue, and cognitive function. Additional research on mortality and economic outcomes will be important to guide treatment pathways and reimbursement decisions.

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“…Observou-se, também, que cada participante lidava com seu diagnóstico ou investigação diagnóstica de forma distinta, sendo possível traçar paralelo com o processo de luto preconizado por Kübler-Ross. Embora não tivesse o mesmo foco do presente trabalho, o estudo de Ucelli, et al (2013) sobre os pais de crianças com esclerose múlti-pla mostrou o impacto do diagnóstico nas relações familiares e como a adoção de estratégias de enfrentamento é importante para ressignificar as expectativas do paciente e de seus familiares.…”

Section: Unindo Os Três Casosunclassified

Luto e enfrentamento em portadores de esclerose múltipla: Diálogo com a teoria de Kübler-Ross

Itagiba-Fonseca

Barroso

2017

Inter. Psicol.

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RESUMOA Esclerose Múltipla (EM) é uma doença crônica e progressiva, que causa perdas motoras, sensoriais e psicológicas. Objetivo: Compreender o processo de luto e enfrentamento de pessoas com esclerose múltipla, em diferentes períodos do diagnóstico, sob enfoque das proposições teóricas de Kübler-Ross sobre o processo de luto. Método: Foram realizadas entrevistas semiestruturadas e foi feita a aplicação das pranchas um e 11 do Teste de Apercepção Temática a três mulheres, uma delas estava em investigação diagnóstica para EM, uma tinha diagnóstico de EM há um ano e a terceira havia sido diagnosticada com EM há cinco anos. Utilizou-se análise de conteúdo temática para organização dos dados e a teoria do luto de Kübler-Ross para analisá-los. Resultados: Diferenças na forma como cada participante lidava com a EM puderam ser observadas. As participantes com diferentes períodos de diagnóstico/investigação vivenciavam fases distintas do processo de luto e utilizavam diferentes tipos de estratégias de enfrentamento. Conclusões: O adoecimento conduz ao luto, que pode ser uma forma para realizar o enfrentamento e ressignificar a vida na nova condição. Palavras-chaves: luto; enfrentamento; esclerose múltipla; Teste de Apercepção Temática ABSTRACT Grief and coping in patients with multiple sclerosis: Dialogue with Kübler-Ross theoryMultiple Sclerosis (MS) is a chronic and progressive disease that causes motor, sensory and psychological losses. Objective: To understand the process of grief and coping in people with multiple sclerosis, at different stages of diagnosis, based on Kübler-Ross' theoretical propositions of grief. Method: Semi-structured interview and application of pictures 1 and 11 of the Thematic Apperception Test to three women, one in diagnostic investigation for MS, one diagnosed with MS a year ago and the third has been diagnosed with MS for five years. We used thematic content analysis for data organization and the Kübler-Ross grief theory to analyze them. Results: Differences in the way each participant felt MS could be observed. The participants at different stages of diagnosis/investigation experienced a different phase of the grief process and used different types of coping strategies. Conclusions: Illness leads to mourning, which can be a coping strategy to re-signify life in the new condition.Keywords: grief; coping; multiple sclerosis; Thematic Apperception Test Direitos AutoraisEste é um artigo de acesso aberto e pode ser reproduzido livremente, distribuído, transmitido ou modificado, por qualquer pessoa desde que usado sem fins comerciais. O trabalho é disponibilizado sob a licença Creative Commons CC-BY-NC. Múltiplos Fatores, tais como o contexto histórico, o momento da vida, a interligação e interdependência entre os seres humanos e a possibilidade de intervenção na tomada de decisões, permeiam o ciclo da vida. Segundo Elder Jr. (1994), existem significados sociais em cada etapa do desenvolvimento, que incluem a expectativa de acontecimentos próprios para cada idade. Neste sentido, a fase adulta...

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Lack of information about multiple sclerosis in children can impact parents' sense of competency and satisfaction within the couple

Cited by 23 publications

References 29 publications

Insights and Recommendations From Parents Receiving a Diagnosis of Pediatric Multiple Sclerosis for Their Child

Insights and Recommendations From Parents Receiving a Diagnosis of Pediatric Multiple Sclerosis for Their Child

A systematic literature review of the burden of pediatric multiple sclerosis in North America and Europe

Luto e enfrentamento em portadores de esclerose múltipla: Diálogo com a teoria de Kübler-Ross

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