Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review.
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ABSTRACT:
SUBMITTER: Ghai S
PROVIDER: S-EPMC8226634 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundFamilies are the primary source of support and care for most children. In Western societies, 4 to 12% of children live in households where a parent has a chronic illness. Exposure to early-life stressors, including parenting stress, parental depression and parental chronic disease could lead to harmful changes in children's social, emotional or behavioural functioning. Little is known about the child living with a parent who has Multiple Sclerosis (MS). We systematically reviewed the literature regarding possible effects of having a parent with MS on the child's or adolescent's psychosocial adjustment.MethodsThe following databases: MEDLINE, PsychInfo, CINAHL, EMBASE, Web of Knowledge, ERIC, and ProQuest Digital Dissertations were searched (from 1806 to December 2012). References from relevant articles were also manually searched. Selected studies were evaluated using the Graphic Appraisal Tool for Epidemiology (GATE).ResultsThe search yielded 3133 titles; 70 articles were selected for full text review. Eighteen studies met inclusion criteria. Fourteen studies employed quantitative techniques, of which 13 were cross-sectional and one was longitudinal. Four studies were both qualitative and cross-sectional in design. Only 2 of 18 studies were rated as having high methodological quality. Overall, eight studies reported that children of MS patients exhibited negative psychosocial traits compared with children of "healthy" parents. Specifically for adolescents, greater family responsibilities were linked to lower social relationships and higher distress. Three studies indicated that parental MS was associated with positive adjustment in children and adolescents, such as higher personal competence, while four found no statistically significant differences.ConclusionAlthough having a parent with MS was often reported to have negative psychosocial effects on children and adolescents, there was a lack of consensus and some positive aspects were also found. However, few high quality studies were identified which makes it difficult to draw evidence-based conclusions at this point. There are potentially important, long-term impacts of early life stressors, such as having a parent with a chronic disease, on subsequent life chances and health, and thus more extensive and higher quality research in this area is greatly needed.
| S-EPMC4040480 | biostudies-literature
Project description:BACKGROUND:Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS. Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients. AIMS:To assess the experiences and the needs of Italian people who recently converted to SPMS, patient significant others (SOs), neurologists and other health professionals (HPs). METHODS:We conducted 15 personal semistructured interviews (PSIs) with SPMS patients who transitioned up to five years, and three focus group meetings (FGMs), one of SPMS SOs, one of neurologists, and one of other HPs. Participants were purposely selected from the three geographic areas of Italy, and varied in terms of gender, education and (for patients) disease severity. PSIs and FGMs were audiorecorded, transcribed and analyzed by two researchers using the framework analysis. RESULTS:One hundred sub-categories were identified, grouped into 13 categories and four themes: 'awareness of the transition', 'communication of the transition', 'dealing with symptoms worsening', and 'needs'. The major unmet needs were collected in four dimensions 'organization and management; 'empowerment training'; 'information'; and 'policies'. CONCLUSIONS:Two are the main findings: first, the widespread lack of awareness around the transition; second, the need to improve the quality of the care pathway in the Italian context. It was particularly stressed the need for a holistic and multidisciplinary approach (with patients and SOs as members of the team), the development of an ad hoc plan of follow up visits with easy access to MS specialists' consultation/treatment; specialized training for each stakeholders; more information on SPMS, daily management and changes at policy level.
| S-EPMC7018010 | biostudies-literature
Project description:BackgroundThere exist many evidence-based interventions available to manage procedural pain in children and neonates, yet they are severely underutilized. Parents play an important role in the management of their child's pain; however, many do not possess adequate knowledge of how to effectively do so. The purpose of the planned study is to systematically review and synthesize current knowledge of the experiences and information needs of parents with regard to the management of their child's pain and distress related to medical procedures in the emergency department.MethodsWe will conduct a systematic review using rigorous methods and reporting based on the PRISMA statement. We will conduct a comprehensive search of literature published between 2000 and 2016 reporting on parents' experiences and information needs with regard to helping their child manage procedural pain and distress. Ovid MEDLINE, Ovid PsycINFO, CINAHL, and PubMed will be searched. We will also search reference lists of key studies and gray literature sources. Two reviewers will screen the articles following inclusion criteria defined a priori. One reviewer will then extract the data from each article following a data extraction form developed by the study team. The second reviewer will check the data extraction for accuracy and completeness. Any disagreements with regard to study inclusion or data extraction will be resolved via discussion. Data from qualitative studies will be summarized thematically, while those from quantitative studies will be summarized narratively. The second reviewer will confirm the overarching themes resulting from the qualitative and quantitative data syntheses. The Critical Appraisal Skills Programme Qualitative Research Checklist and the Quality Assessment Tool for Quantitative Studies will be used to assess the quality of the evidence from each included study.DiscussionTo our knowledge, no published review exists that comprehensively reports on the experiences and information needs of parents related to the management of their child's procedural pain and distress. A systematic review of parents' experiences and information needs will help to inform strategies to empower them with the knowledge necessary to ensure their child's comfort during a painful procedure.Systematic review registrationPROSPERO CRD42016043698.
| S-EPMC5461670 | biostudies-literature
Project description:Multiple sclerosis (MS) is the most abundant inflammatory demyelinating disorder of the central nervous system. Despite recent advances in its long-term immunomodulatory treatment, MS patients still suffer from relapses, significantly contributing to disability accrual. In recent years, apheresis procedures such as therapeutic plasma exchange (TPE) and immunoadsorption (IA) have been recognized as two options for treating MS relapses, that do not respond to standard treatment with corticosteroids. TPE is already incorporated in most international guidelines, although evidence for its use resulted mostly from either case series or small unblinded and/or non-randomized trials. Data on IA are still sparse, but several studies indicate comparable efficacy between both apheresis procedures. This article gives an overview of the published evidence on TPE and IA in the treatment of acute relapses in MS. Further, we outline current evidence regarding individual outcome predictors, describe technical details of apheresis procedures, and discuss apheresis treatment in children and during pregnancy.
| S-EPMC6832170 | biostudies-literature
Project description:Although treatment guidelines recommend interventions entailing caregiver involvement for children and adolescents following traumatic experiences, evidence on their effectiveness is inconsistent. The present systematic review and meta-analysis considered possible moderators of their effectiveness.MethodEligible studies were (quasi-)randomized controlled trials and efficacy trials published in English or German with participants up to the age of 21 years presenting symptoms of mental disorders due to traumatic experiences. The effectiveness of interventions entailing any kind and extent of caregiver involvement had to be investigated by applying evaluated instruments. PubMed, PsycINFO, ERIC, COCHRANE and PSYNDEX were searched.ResultsA total of 33 studies with 36 independent samples were retrieved. Child- and parent-reports on PTSD, depression, anxiety, ADHD, internalizing, externalizing symptoms and behavior problems were analyzed where available. The pooled effect size is significant and robust at post-treatment for child-reported PTSD, g = - 0.34 (95% CI = - 0.53; - 0.14), parent-reported PTSD, g = - 0.41 (95% CI = - 0.71; - 0.11), child-reported depression, g = - 0.29 (95% CI = - 0.46; - 0.11), child-reported anxiety, g = - 0.25 (95% CI = - 0.42; - 0.08), and parent-reported internalizing symptoms, g = - 0.27 (95% CI = - 0.47; - 0.07). Female sex and fulfilling diagnostic criteria appeared as potential moderators. The only significant effect size at follow-up is found for child-reported PTSD symptoms 12 months post-treatment, g = - 0.37 (95% CI = - 0.67; - 0.07).ConclusionsInterventions entailing caregiver involvement revealed greater symptom reductions than control conditions. Determinants of their effectiveness should be examined further.
| S-EPMC9879828 | biostudies-literature
Project description:BackgroundCaregivers of children with cancer can experience stress when seeking care in the emergency department (ED). We sought to assess how caregivers prepare for and manage a medical emergency that arises in the community setting.MethodsA qualitative evaluation of ED visit preparations taken by children with cancer and their caregivers using self-reported interactive toolkits. Eligible participants included children with cancer (age: 11 to 21 y) currently receiving therapy for cancer diagnosis with an ED visit (besides initial diagnosis) within the previous 2 months and caregivers of same. Participants received a paper toolkit, which were structured as experience maps with several generative activities. Toolkits were transcribed, thematically coded, and iteratively analyzed using NVivo 12.0 software.ResultsA total of 25 toolkits were received (7 children, 18 caregivers), with about three quarters of participants living >1 hour from the treating institution. Several important common themes and areas for improvement emerged. Themes included struggles with decision-making regarding when and where to seek ED care, preparing to go to the ED, waiting during the ED visit, repetition of information to multiple providers, accessing of ports, and provider-to-provider and provider-to-caregiver/patient communication.ConclusionsThe information gained from this study has the potential to inform a tool to support this population in planning for and managing emergent medical issues. This tool has the potential to improve patient and caregiver satisfaction, patient-centered outcomes, and clinical outcomes.
| S-EPMC8127850 | biostudies-literature
Project description:BACKGROUND:Multiple Sclerosis (MS) is a chronic, degenerative condition with an estimated UK prevalence of 100 000. Contact with health-care services is frequent and long-term; however, little research has investigated the experiences of health care for MS in the UK. OBJECTIVE:The aim of this systematic narrative review was to critically review qualitative studies reporting patients' experiences of health-care services in the UK. SEARCH STRATEGY:EMBASE, CINAHL, Medline, psychINFO and MS Society databases were searched with no date restrictions using search terms denoting 'Multiple Sclerosis', 'health-care services', 'patient', 'experience' and 'qualitative research'. Snowballing and hand searching of journals were used. INCLUSION CRITERIA:Studies were included if they used qualitative methods of data collection and analysis to investigate adult patient's experiences of health-care services for MS in the UK. DATA EXTRACTION AND SYNTHESIS:Data were extracted independently and analysed jointly by two reviewers. Studies were appraised for the quality of evidence described using the Critical Appraisal Skills Programme's qualitative tool. Due to the breadth of areas covered, the data were too heterogeneous for a synthesis and are presented as a narrative review. MAIN RESULTS AND DISCUSSION:Five studies were included. Studies primarily investigated diagnosis or palliative care. Themes of importance were the emotional experience of health care, continuity of care and access to services, and support from health-care professionals. Studies were mainly poor quality and focussed on a homogenous sample. CONCLUSIONS:This study provides the first review of the UK evidence base of experiences of health care for MS. Future research should investigate experiences of care after diagnosis in a more varied sample of participants.
| S-EPMC5810635 | biostudies-literature
Project description:BackgroundSpinal muscular atrophy (SMA) is a rare degenerative neuromuscular disease, mostly occurring in infants and children, leading to muscle wasting and weakness, and premature death. Due to new developments of multiple disease-modifying treatments within the last years, the interest of research in patients affected by SMA increased steadily. However, the psychosocial situation of parents as informal caregivers is still rarely addressed.ObjectivesThis review aims to highlight quantitative and qualitative data about the psychosocial situation, caregiver burden, and needs of parents as informal caregivers for children and adolescents with SMA.MethodsA systematic literature review was performed including quantitative and qualitative original studies focusing on different psychosocial aspects and outcomes for parents of children and adolescents < 21 years of age with SMA type I-IV (PROSPERO; registration number CRD42020219020). We searched the following databases in November 2020 with a research update in August 2021: MEDLINE, CINAHL, PsycINFO and Web of Science.ResultsIn total, 24 articles from 23 studies were selected for inclusion (15 quantitative studies, 7 articles from 6 qualitative studies, 2 mixed methods studies). The synthesis of included studies shows multiple sources of psychosocial burden for parents of children and adolescents affected by SMA: Most studies found reduced levels of quality of life, moderate to high levels of caregiver burden and distress, as well as physical and mental health symptoms. Further, findings indicate several unmet family needs regarding information, care coordination, treatment decisions, financial support, and adequate supportive care services.ConclusionParents of children and adolescents with SMA face multiple sources of psychosocial stressors, caregiver burden and various unmet family needs. To unburden families, the needs of parents as caregivers should be included in integrated care paths for SMA to improve their psychosocial situation and thus their ability to care for their children and to treat or prevent physical and mental health problems due to overburdening. Future research should focus not only on quality of life and on caregiving-related burden but should also examine the clinical relevance of reported symptoms to support the implementation of adequate support services for families affected by SMA.
| S-EPMC9295422 | biostudies-literature
Project description:Background: Over the past two decades, various novel disease-modifying drugs for multiple sclerosis (MS) have been approved. However, there is high variability in the patient response to the available medications, which is hypothesized to be partly attributed to genetics. Objectives: To conduct a systematic review of the current literature on the pharmacogenomics of MS therapy. Methods: A systematic literature search was conducted using PubMed/MEDLINE database searching for articles investigating a role of genetic variation in response to disease-modifying MS treatments, published in the English language up to October 9th, 2018. PRISMA guidelines for systematic reviews were applied. Studies were included if they investigated response or nonresponse to MS treatment defined as relapse rate, by expanded disability status scale score or based on magnetic resonance imaging. The following data were extracted: first author's last name, year of publication, PMID number, sample size, ethnicity of patients, method, genes, and polymorphisms tested, outcome, significant associations with corresponding P-values and confidence intervals, response criteria, and duration of the follow-up period. Results: Overall, 48 articles published up to October 2018, evaluating response to interferon-beta, glatiramer acetate, mitoxantrone, and natalizumab, met our inclusion criteria and were included in this review. Among those, we identified 42 (87.5%) candidate gene studies and 6 (12.5%) genome-wide association studies. Existing pharmacogenomic evidence is mainly based on the results of individual studies, or on results of multiple studies, which often lack consistency. In recent years, hypothesis-free approaches identified novel candidate genes that remain to be validated. Various study designs, including the definition of clinical response, duration of the follow-up period, and methodology as well as moderate sample sizes, likely contributed to discordances between studies. However, some of the significant associations were identified in the same genes, or in the genes involved in the same biological pathways. Conclusions: At the moment, there is no available clinically actionable pharmacogenomic biomarker that would enable more personalized treatment of MS. More large-scale studies with uniform design are needed to identify novel and validate existing pharmacogenomics findings. Furthermore, studies investigating associations between rare variants and treatment response in MS patients, using next-generation sequencing technologies are warranted.
| S-EPMC6399303 | biostudies-literature
Project description:BackgroundCaregivers of individuals with multiple sclerosis (MS) have emotional, instrumental, wellness, and social needs beginning with their partner's diagnosis and continuing throughout the disease course. Their feelings of grief, anxiety, depression, isolation, and fatigue, as well as the limited time they have for their own self-care, impact their health and quality of life; yet caregiver needs often go unrecognized by health care providers, extended family, friends, and employers. This project creates an online caregiver resource that will benefit caregivers, enable MS clinicians to offer caregivers the support and resources they need in a timely and time-efficient way, and thereby benefit individuals with MS as well.MethodsWe assembled a caregiver advisory board to help us identify caregiver needs and corresponding resources starting from diagnosis and continuing throughout the disease course. We then surveyed the larger MS caregiver community for validation and refinement of the resource list. Each of the identified resources was then vetted for quality and accuracy by the authors.ResultsThe caregiver resources are now ready to be put into a dedicated website that will allow easy access to information, support, tools, and resources as needed.ConclusionsThe process of creating this caregiver resource confirmed longstanding findings in the literature about the caregiving role. The resource that has been created will benefit caregivers of individuals with MS, their loved ones, and MS clinicians.
| S-EPMC10634596 | biostudies-literature