Department of Sociology, Loyola University Maryland, 4501 North Charles St., Baltimore, MD, 20210, USA.
BMC Pediatr. 2021 Apr 14;21(1):173. doi: 10.1186/s12887-021-02647-7.
Stigma, both enacted and internalized, is part of the illness experience of many chronic conditions / diseases and has been found to increase psychological distress, lower self-esteem, and impact social engagement lowering quality of life (QOL). Stigma among pediatric patients is of particular concern due to its potential impact on identity formation. Using patient data from the online FD/MAS Alliance Patient Registry (FDMASAPR), this study seeks to 1) determine levels of enacted and self-stigma in a pediatric population of fibrous dysplasia (FD) / McCune Albright syndrome (MAS) patients and 2) to explore the relationship between stigma and anxiety and depression.
This is a cross sectional analysis of deidentified self-report data from 18 pediatric patients. Key analytic variables include the Neuro-QOL stigma short form, the Hospital Anxiety and Depression Scale (HADS), diagnostic category and craniofacial involvement, and select demographics. Sample means and score distributions are examined. Bivariate relationships between stigma, anxiety and depression and patient's personal and medical characteristics are established through analysis of variance and correlation.
Composite stigma levels for FD/MAS pediatric patients were comparable to those of children with multiple sclerosis, epilepsy, and muscular dystrophy. Self-stigma was more frequently reported than enacted/felt stigma, but few patients indicated complete freedom from either type of stigma. Diagnosis was significantly related to self-stigma. Significant bivariate relationships were found between depression and enacted/felt and self-stigma and between anxiety and self-stigma.
This study establishes the illness experience of pediatric patients with FD / MAS is impacted by stigma and suggests they should be regularly screened for stigma and psychological distress. It supports the integration of clinical psychologists/ therapists in regular patient care, referral of families to advocacy organizations, and indicates that rare disease patient registries can be a useful tool in efforts to improve the QOL of patients.
污名化，无论是实际表现还是内化，都是许多慢性疾病/病症患者的疾病体验的一部分，它被发现会增加心理困扰、降低自尊心，并影响社会参与，从而降低生活质量（QOL）。儿科患者的污名化尤其令人担忧，因为它可能会影响身份的形成。本研究利用来自在线 FD/MAS 联盟患者登记处（FDMASAPR）的患者数据，旨在 1）确定纤维发育不良（FD）/麦卡恩-阿尔布赖特综合征（MAS）儿科患者群体中的实际污名和自我污名程度，以及 2）探讨污名与焦虑和抑郁之间的关系。
这是对 18 名儿科患者的匿名自我报告数据进行的横断面分析。主要分析变量包括神经生活质量污名简短量表、医院焦虑和抑郁量表（HADS）、诊断类别和颅面受累以及一些人口统计学特征。检查样本平均值和评分分布。通过方差分析和相关性分析，确定污名、焦虑和抑郁与患者个人和医疗特征之间的关系。
FD/MAS 儿科患者的综合污名水平与多发性硬化症、癫痫和肌肉营养不良症的儿童相似。自我污名的报告频率高于实际污名/感觉污名，但很少有患者表示完全没有任何类型的污名。诊断与自我污名显著相关。发现抑郁与实际污名/感觉污名以及焦虑与自我污名之间存在显著的双变量关系。
本研究确立了 FD/MAS 儿科患者的疾病体验受到污名化的影响，并表明他们应定期接受污名化和心理困扰的筛查。它支持在常规患者护理中纳入临床心理学家/治疗师、将家庭转介给宣传组织，并表明罕见病患者登记处可以成为提高患者生活质量的有用工具。
