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Hypothalamic hamartomas (HHs) are deep-seated congenital lesions that typically lead to pharmacoresistant epilepsy and a catastrophic encephalopathic syndrome characterised by severe neuropsychological impairment and decline in quality of life. A variety of surgical approaches and technologies are available for the treatment of HH-related pharmacoresistant epilepsy. There remains, however, a paucity of literature directly comparing their relative efficacy and safety. This protocol aims to facilitate a systematic review and meta-analysis that will characterise and compare the probability of seizure freedom and relevant postoperative complications across different surgical techniques performed for the treatment of HH-related pharmacoresistant epilepsy.
This protocol was developed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Individual Participant Data guidelines. Three major databases, PubMed, Embase and Scopus, will be systematically searched from database inception and without language restrictions for relevant articles using our predefined search strategy. Title–abstract and full text screening using inclusion and exclusion criteria created a priori will be performed by two independent reviewers to identify eligible articles. Conflicts will be resolved via discussion with a third team member. Following data extraction of both study-level and individual patient data (IPD), a study-level and IPD meta-analysis will be performed. Study-level analysis will focus on assessing the degree of heterogeneity in the data and quantifying overall seizure outcomes for each surgical technique. The IPD analysis will use multivariable regression to determine perioperative predictors of seizure freedom and complications that can guide patient and technique selection.
This work will not require ethics approval as it will be solely based on previously published and available data. The results of this review will be shared via conference presentation and submission to peer-reviewed neurosurgical journals.
CRD42022378876.
by Weilin Chen, Joyce Oi Kwan Chung, Katherine Ka Wai Lam, Alex Molassiotis
BackgroundPerspectives of key stakeholders should be fully considered to enhance culturally appropriate strategies in end-of-life communication and strengthen healthcare service delivery. So far, little research evidence is available on Chinese patients’, families’, and healthcare professionals’ experiences with and perspectives of end-of-life communication in hospital settings.
AimThe current study aims to explore experiences, perceptions and suggestions of end-of-life communication among Chinese terminally ill patients, their families and healthcare providers.
MethodsThe phenomenology qualitative approach will be adopted. Semi-structured in-depth interviews and focus group discussions will be used to collect relevant data. Eligible terminally ill patients, family caregivers and healthcare providers will be recruited in two hospitals in Mainland China via purposive sampling. Thematic analysis will be performed to analyse data. The Standards for Reporting Qualitative Research (SRQR) checklist will be followed for reporting. This study has been registered at ClinicalTrials.gov (NCT05734781).
DiscussionThis qualitative study is, as far as we are aware, the first to specifically address patient/family-provider end-of-life communication in the Chinese social-cultural context. The results hold the potential to enrich current knowledge of end-of-life communication, navigate culturally appropriate communication strategies, and inform the development of related training programs for healthcare providers in hospital settings.
FreshRSS 