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针对非智力障碍性颅面畸形患者及其家庭的心理社会问题的流行病学、预防、诊断、治疗和结局:定性数据分析的系统评价方案。

Epidemiology, prevention, diagnosis, treatment, and outcomes for psychosocial problems in patients and families affected by non-intellectually impairing craniofacial malformation conditions: a systematic review protocol of qualitative data.

机构信息

, Buckhannon, USA.

出版信息

Syst Rev. 2019 May 27;8(1):127. doi: 10.1186/s13643-019-1045-1.

DOI:10.1186/s13643-019-1045-1
PMID:31133050
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6537209/
Abstract

BACKGROUND

Physical attractiveness or unattractiveness wields a tremendous impact on the social and psychological components of life. Many individuals with facial deformities are treated more negatively than normal individuals, which may affect their self-image, quality of life, self-esteem, interpersonal encounters, and ultimately, success in life. Malformations that do not create physiological problems and whose major health impact is to degrade physical attractiveness and engender psychosocial consequences are insufficiently understood and not considered functional problems by medical insurance companies.

METHODS/DESIGN: As part of a clinical practice guideline development process for psychosocial concerns in Freeman-Burian syndrome, manuscripts describing psychosocial considerations related to the presence of non-intellectually impairing craniofacial malformation conditions or associated clinical activities are sought, especially focusing on epidemiology, prevention, symptoms, diagnoses, severity, timing, treatment, consequences, and outcomes. All published papers on this topic are considered in searching PubMed, OVID MEDLINE, and CINAHL Complete and again before final analyses. The results will be written descriptively to be practically useful and structured around the type or timing of psychosocial problems or consequences described or target population characteristics. No meta-analysis is planned.

DISCUSSION

Because the quality of research on psychosocial problems in craniofacial malformation conditions is known to be fraught with methodological problems, inconsistencies, and considerable knowledge gaps, we anticipate difficulties, which may limit the review questions able to be answered. We hope to produce a survey relevant to all non-intellectually impaired craniofacially deformed patients and their families and outline knowledge gaps and prioritise areas for clinical investigation.

SYSTEMATIC REVIEW REGISTRATION

PROSPERO CRD42018093021: UNIVERSAL TRIAL NUMBER: U1111-1211-8153.

摘要

背景

外貌吸引力或缺乏吸引力对生活的社会和心理层面有着巨大的影响。许多面部畸形的个体比正常个体受到更负面的对待,这可能会影响他们的自我形象、生活质量、自尊心、人际交往,最终影响他们在生活中的成功。那些不会导致生理问题,而主要影响外貌吸引力并产生心理社会后果的畸形,没有被充分理解,也没有被医疗保险公司视为功能问题。

方法/设计:作为弗赖恩-比利安综合征心理社会问题临床实践指南制定过程的一部分,我们正在寻找描述与非智力障碍性颅面畸形状况或相关临床活动相关的心理社会问题的文献,特别是侧重于流行病学、预防、症状、诊断、严重程度、时间、治疗、后果和结局。在搜索 PubMed、OVID MEDLINE 和 CINAHL Complete 时,以及在最终分析之前,都会考虑到这个主题的所有已发表论文。结果将以描述性的方式呈现,以便实际有用,并围绕描述的心理社会问题或后果的类型或时间或目标人群特征进行组织。不计划进行荟萃分析。

讨论

由于已知颅面畸形状况心理社会问题的研究质量存在方法学问题、不一致性和相当大的知识差距,我们预计会遇到困难,这可能会限制能够回答的审查问题。我们希望生成一份与所有非智力障碍性颅面畸形患者及其家属相关的调查,并概述知识差距和优先考虑临床研究的领域。

系统评价注册

PROSPERO CRD42018093021:通用试验编号:U1111-1211-8153。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b66d/6537209/ceeaff08461f/13643_2019_1045_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b66d/6537209/ceeaff08461f/13643_2019_1045_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b66d/6537209/ceeaff08461f/13643_2019_1045_Fig1_HTML.jpg

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