scholarly journals Paediatric Multiple Sclerosis: A Scoping Review of Patients’ and Parents’ Perspectives

Children ◽  
2021 ◽  
Vol 9 (1) ◽  
pp. 11
Author(s):  
Maria Luca ◽  
Nerea Ortega-Castro ◽  
Francesco Patti

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.

2020 ◽  
Vol 29 (3S) ◽  
pp. 623-630
Author(s):  
Sandra N. Smith ◽  
Ethan Smallwood ◽  
Magdalena Sereda ◽  
Bethany Adams ◽  
Derek J. Hoare

Purpose Hyperacusis is a disorder characterized by reduced sound tolerance leading to ear pain, emotional distress, and reduced quality of life. Many people with hyperacusis turn to the Internet for information and support from online communities to discuss their condition. The purpose of this study was to assess the content and quality of hyperacusis information presented online. Method The three most used Internet search engines were used to identify relevant websites using the single search term hyperacusis . Fifteen websites were selected for analysis. Details of the purpose, audience, and content of each website were extracted using a bespoke data extraction form. The quality of the information on each website was rated using the validated DISCERN questionnaire. Results There was a wide disparity in the quality and content of hyperacusis information across websites. The website Hyperacusis Focus achieved the highest overall DISCERN score. Hyperacusis Focus and U.K. National Health Service websites were the most comprehensive online resources for health care professionals and patients, respectively. Wikipedia was judged useful for both health care professionals and patients. In general, hyperacusis-related information was accurate. However, no single website provided a complete account of hyperacusis, and some were judged to be selective in the information they provided. Conclusions The Internet provides an important source of information for those who have hyperacusis and those who care for them. Revisions to the websites reviewed here are needed for each to provide a complete account of hyperacusis. Supplemental Material https://doi.org/10.23641/asha.12869717


Author(s):  
F. Bilotta ◽  
G. Russo ◽  
M. Verrengia ◽  
A. Sportelli ◽  
L. Foti ◽  
...  

Abstract Background Postoperative delirium is a serious complication that can occur within the 5th postoperative day. In 2017, the European Society of Anesthesiologists delivered dedicated guidelines that reported the need for routine monitoring using validated scales. Objective Aim of this systematic review is to identify clinical studies related to postoperative delirium that included postoperative monitoring with validated scales. Design Systematic review Methods Searched keywords included the following terms: postoperative, postsurgical, post anesthesia, anesthesia recovery, delirium, and confusion. Two researchers independently screened retrieved studies using a data extraction form. Results Literature search led to retrieve 6475 hits; of these, 260 studies (5.6% of the retrieved), published between 1987 and 2021, included in their methods a diagnostic workup with the use of a postoperative delirium validated scale and monitored patients for more than 24 h, therefore are qualified to be included in the present systematic review. Conclusion In conclusion, available clinical literature on postoperative delirium relies on a limited number of studies, that included a validated diagnostic workup based on validated scales, extracted from a large series of studies that used inconsistent diagnostic criteria. In order to extract indications based on reliable evidence-based criteria, these are the studies that should be selectively considered. The analysis of these studies can also serve to design future projects and to test clinical hypothesis with a more standardized methodological approach.


2020 ◽  
Author(s):  
Farhud Shams ◽  
James S.H. Wong ◽  
Mohammadali Nikoo ◽  
Ava Outadi ◽  
Ehsan Moazen-Zadeh ◽  
...  

BACKGROUND There is a growing body of evidence on eHealth interventions that are targeting substance use disorders. Development and decision-making in eHealth has been challenging due to the lack of understanding of how programs work effectively. OBJECTIVE We conducted a realist review on literature of Electronic Health Cognitive-behavioural Therapy (eCBT) programs for substance use with the goal of answering the following realist question: “how do different eCBT interventions for substance use interact with different contexts to pro-duce certain outcomes?” METHODS A literature search of published and gray literature of all eHealth programs targeting substance use was conducted. After data extraction, the scope was refined to only include literature fo-cusing on eCBT programs targeting substance use. We synthesized the available qualitative evidence from the literature into Context-Mechanism-Outcome configurations in order to bet-ter understand when and how programs work. RESULTS A total of 54 papers studying 24 programs were reviewed. Our final results identified 8 Con-text-Mechanism-Outcome configurations from 5 unique programs that met criteria for rele-vance and rigor. CONCLUSIONS 5 strategies that may be applied in future eCBT programs for substance use are discussed and may contribute to a better understanding of mechanisms and ultimately help design more ef-fective solutions in the future. Future research on eHealth CBT programs should try and under-stand mechanisms of program strategies and how they lead to outcomes in different contexts.


2019 ◽  
Vol 23 (4) ◽  
pp. 442-454 ◽  
Author(s):  
Rachel Mandela ◽  
Maggie Bellew ◽  
Paul Chumas ◽  
Hannah Nash

OBJECTIVEThere are currently no guidelines for the optimum age for surgical treatment of craniosynostosis. This systematic review summarizes and assesses evidence on whether there is an optimal age for surgery in terms of neurodevelopmental outcomes.METHODSThe databases MEDLINE, PsycINFO, CINAHL, Embase + Embase Classic, and Web of Science were searched between October and November 2016 and searches were repeated in July 2017. According to PICO (participants, intervention, comparison, outcome) criteria, studies were included that focused on: children diagnosed with nonsyndromic craniosynostosis, aged ≤ 5 years at time of surgery; corrective surgery for nonsyndromic craniosynostosis; comparison of age-at-surgery groups; and tests of cognitive and neurodevelopmental postoperative outcomes. Studies that did not compare age-at-surgery groups (e.g., those employing a correlational design alone) were excluded. Data were double-extracted by 2 authors using a modified version of the Cochrane data extraction form.RESULTSTen studies met the specified criteria; 5 found a beneficial effect of earlier surgery, and 5 did not. No study found a beneficial effect of later surgery. No study collected data on length of anesthetic exposure and only 1 study collected data on sociodemographic factors.CONCLUSIONSIt was difficult to draw firm conclusions from the results due to multiple confounding factors. There is some inconclusive evidence that earlier surgery is beneficial for patients with sagittal synostosis. The picture is even more mixed for other subtypes. There is no evidence that later surgery is beneficial. The authors recommend that future research use agreed-upon parameters for: age-at-surgery cut-offs, follow-up times, and outcome measures.


2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Lynn Hendricks ◽  
Ingrid Eshun-Wilson ◽  
Anke Rohwer

Abstract Background People living with human immunodeficiency virus (PLHIV) struggle with the challenges of living with a chronic disease and integrating antiretroviral treatment (ART) and care into their daily lives. The aims of this study were as follows: (1) to undertake the first mega-aggregation of qualitative evidence syntheses using the methods of framework synthesis and (2) make sense of existing qualitative evidence syntheses that explore the barriers and facilitators of adherence to antiretroviral treatment, linkage to care and retention in care for PLHIV to identify research gaps. Methods We conducted a comprehensive search and did all screening, data extraction and critical appraisal independently and in duplicate. We used the Kaufman HIV Behaviour Change model (Kaufman et al., 2014) as a framework to synthesise the findings using the mega-aggregative framework synthesis approach, which consists of 8 steps: (1) identify a clearly defined review question and objectives, (2) identify a theoretical framework or model, (3) decide on criteria for considering reviews for inclusion, (4) conduct searching and screening, (5) conduct quality appraisal of the included studies, (6) data extraction and categorisation, (7) present and synthesise the findings, and (8) transparent reporting. We evaluated systematic reviews up to July 2018 and assessed methodological quality, across reviews, using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews. Results We included 33 systematic reviews from low, middle- and high-income countries, which reported on 1,111,964 PLHIV. The methodological quality of included reviews varied considerably. We identified 544 unique third-order concepts from the included systematic reviews, which were reclassified into 45 fourth-order themes within the individual, interpersonal, community, institutional and structural levels of the Kaufman HIV Behaviour Change model. We found that the main influencers of linkage, adherence and retention behaviours were psychosocial and personal characteristics—perceptions of ART, desires, fears, experiences of HIV and ART, coping strategies and mental health issues—interwoven with other factors on the interpersonal, community, institutional and structural level. Using this approach, we found interdependence between factors influencing ART linkage, retention and adherence and identified the need for qualitative evidence that explores, in greater depth, the complex relationships between structural factors and adherence, sociodemographic factors such as community violence and retention, and the experiences of growing up with HIV in low- and middle-income countries—specifically in children, youth, women and key populations. Conclusions This is the first mega-aggregation framework synthesis, or synthesis of qualitative evidence syntheses using the methods of framework synthesis at the overview level. We found the novel method to be a transparent and efficient method for assessing the quality and making sense of existing qualitative systematic reviews. Systematic review registration The protocol of this overview was registered on PROSPERO (CRD42017078155) on 17 December 2017.


2021 ◽  
Vol 84 (2) ◽  
pp. 71-84
Author(s):  
Mohsen Ali Alhomoud ◽  
Abdul Sattar Khan ◽  
Iftetah Alhomoud

<b><i>Background:</i></b> Multiple sclerosis (MS) is an inflammatory demyelinating chronic neurological disease that affects the central nervous system of young adults and their quality of life. Several studies have investigated the effects of pregnancy and breastfeeding on MS. However, the evidence regarding the influence of pregnancy and breastfeeding on MS is still accumulating. This review aimed to summarize the current evidence regarding the effects of pregnancy and breastfeeding on MS. <b><i>Summary:</i></b> A systematic electronic literature search of the PubMed and Embase databases was conducted to determine relevant published articles. The eligible studies were summarized and evaluated in tables. <b><i>Key Messages:</i></b> The majority of the studies indicated that pregnancy appears to lower the rate of MS relapses, particularly in the third trimester. The evidence regarding the effect of breastfeeding on MS remains inconsistent. Despite reports of negative obstetric outcomes in some pregnant women with MS, pregnancies in women with MS should not be categorized as high-risk pregnancies.


Medicina ◽  
2021 ◽  
Vol 57 (4) ◽  
pp. 350
Author(s):  
Ciro Manzo ◽  
Maria Maslinska ◽  
Alberto Castagna ◽  
Elvis Hysa ◽  
Alfonso Merante ◽  
...  

Background and Objectives: Laboratory liver abnormalities can be observed in patients affected with polymyalgia rheumatica (PMR) and/or giant cell arteritis (GCA), especially with a cholestatic pattern. The first objective of our review article is to discuss the potential link between antimitochondrial antibodies (AMA) and/or primary biliary cholangitis (PBC) and PMR/GCA, according to the evidences of literature. The second objective is to discuss the association of PMR/GCA with the other rheumatic diseases having PBC as a common manifestation. Materials and Methods: A literature search was performed on PubMed and Medline (OVID interface) using these terms: polymyalgia rheumatica, giant cell arteritis, antimitochondrial antibodies, primary biliary cholangitis, primary Sjogren’s syndrome, systemic sclerosis, and systemic lupus erythematosus. The search was restricted to all studies and case reports published in any language. Reviews, conference abstracts, comments, and non-original articles were excluded; however, each review’s reference list was scanned for additional publications meeting this study’s aim. When papers reported data partially presented in previous articles, we referred to the most recent published data. Results and Conclusions: Our literature search highlighted that cases reporting an association between AMA, PBC and PMR/GCA were very uncommon; AMA antigenic specificity had never been detected and biopsy-proven PBC was reported only in one patient with PMR/GCA. Finally, the association of PMR/GCA with autoimmune rheumatic diseases in which PBC is relatively common was anecdotal.


2021 ◽  
pp. postgradmedj-2020-138864
Author(s):  
Sinéad Lydon ◽  
Emily O'Dowd ◽  
Chloe Walsh ◽  
Angela O'Dea ◽  
Dara Byrne ◽  
...  

Women are substantially underrepresented in senior and leadership positions in medicine and experience gendered challenges in their work settings. This systematic review aimed to synthesise research that has evaluated interventions for improving gender equity in medicine. English language electronic searches were conducted across MEDLINE, CINAHL, Academic Search Complete, PsycINFO and Web of Science. Reference list screening was also undertaken. Peer-reviewed studies published between 2000 and March 2020 that evaluated interventions to improve gender equity, or the experiences of women, in academic or clinical medicine were reviewed. Dual reviewer data extraction on setting, participants, type of intervention, measurement and outcomes was completed. Methodological rigour and strength of findings were evaluated. In total, 34 studies were included. Interventions were typically focused on equipping the woman (82.4%), that is, delivering professional development activities for women. Fewer focused on changing cultures (20.6%), ensuring equal opportunities (23.5%) or increasing the visibility or valuing of women (23.5%). Outcomes were largely positive (87.3%) but measurement typically relied on subjective, self-report data (69.1%). Few interventions were implemented in clinical settings (17.6%). Weak methodological rigour and a low strength of findings was observed. There has been a focus to-date on interventions which Equip the Woman. Interventions addressing systems and culture change require further research consideration. However, institutions cannot wait on high quality research evidence to emerge to take action on gender equity. Data collated suggest a number of recommendations pertaining to research on, and the implementation of, interventions to improve gender equity in academic and clinical settings.


2017 ◽  
Vol 11 (1) ◽  
pp. 57-74 ◽  
Author(s):  
Jeffrey Voigt ◽  
Michael Mosier ◽  
Rabih Darouiche

Objectives: Determine if the peer-reviewed evidence supports single-patient ward bedrooms in low-acuity care settings within a hospital. Background: New evidence exists since the 2006 Facility Guideline Institute guideline recommended single-bedded rooms (SBRs) in low-acuity care settings. Additionally, prior studies evaluated high-acuity care settings (e.g., critical care) in their recommendations on SBRs. There is a need to reevaluate the evidence. Methods: A systematic review of the literature was completed including electronic and hand searches of references. A data extraction form was utilized. Two reviewers evaluated the studies independently. Studies that were included examined the effect of single-patient rooms on medical surgical ward beds only. Each study was graded using accepted clinical evidence grading instruments. Results: Over 1,400 records were identified. After excluding studies, a total of 49 records were graded. The highest quality evidence identified (Center for Evidence-Based Medicine [CEBM]: 2a, 2b, and Grading of Recommendations, Assessment, Development, and Evaluation [GRADE] C) did not support the use of single-patient rooms for reducing infections, for minimizing patient falls, for reducing medication errors, or for patient satisfaction. Operational efficiencies were improved with SBRs but only addressed the maternity ward. The lowest quality evidence (CEBM: 4/5 and GRADE D) supported the use of single-patient rooms. Conclusions: Based on CEBM and GRADE assessments, there is a lack of high-quality data supporting the use of low-acuity SBRs throughout the entire hospital. Furthermore, it is recommended that more research be conducted on the effect of SBRs, so higher quality evidence is developed.


2018 ◽  
Vol 80 (3-4) ◽  
pp. 115-120 ◽  
Author(s):  
Marcel Gebhardt ◽  
Peter Kropp ◽  
Frank Hoffmann ◽  
Uwe K. Zettl

Aims: Headaches have not been considered a typical symptom of multiple sclerosis (MS), although since 2000, almost every study showed high prevalence. We screened 50 MS patients at the time of first occurrence of neurological symptoms and found the highest prevalence of headache in MS that was ever recorded (78%). Postmortem histological analyses of MS patients’ brains revealed lymphoid follicle-like structures in the cerebral meninges and a pathophysiological link between headache, and high inflammatory activity especially in the initial phase of MS could be suspected. The aim of this study was to get insights into the persistence of headache in the further progress of the disease. Methods: In a prospective, multicenter study, 50 MS patients at the time of first symptom manifestation were screened for the presence of headache within the last 4 weeks and again 6 months later with help of the Rostock Headache Questionnaire (Rokoko) as well as using the evaluation of case history and clinical-neurological investigation. Results: We found a decrease of headache prevalence after 6 months from 78 to 61% (p = 0.01). We could also show a decrease of headache frequency, measured by days with headache in the last 4 weeks (9.5 vs. 5.9, p = 0.001). Migraine or probable migraine was the most frequent headache. In both investigations, the most frequent headache was recurrent pain with pulsating and throbbing character that lasted between 4 and 72 h. Conclusion: Headaches should be taken seriously as an important symptom in early MS. The decrease of headache 6 months after first symptom manifestation of MS could be a result of the immunomodulatory therapy. Young patients in whom migraine-like headaches occur should obligatory undergo an MRI of the head, and in the case of abnormal findings differential diagnosis should be initiated. This could reduce latency until final diagnosis of MS and enable early treatment.


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