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| 罕见病患者心理弹性及相关因素研究 |
| research on psychological resilience of patients with rare diseases and its relevant factors |
| 投稿时间：2026-04-11 |
| DOI：10.3969/j.issn.1000-0399.2026.09.016 |
| 中文关键词: 罕见病 心理弹性 社会支持 家庭弹性 |
| 英文关键词: Rare disease Psychological resilience Social support Family resilience |
| 基金项目:安徽省教育厅重大科研项目(编号:2025AHGXSK20016) |
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| 中文摘要: |
| 目的 探讨罕见病患者心理弹性现状及其影响因素，并为提升罕见病患者心理弹性提供依据。方法 采用滚雪球抽样的方法，以2025年1月1日至4月30日安徽省5家医院皮肤科、血液科和呼吸科等7个临床科室的罕见病患者为研究对象，运用一般资料调查表、心理弹性量表、社会支持评定量表和家庭弹性评估量表开展问卷调查，收集研究对象的基本情况、心理弹性水平、社会支持水平和家庭弹性水平，采用Mann-Whitney U检验和Kruskal Wallis H检验比较不同组间研究对象心理弹性得分差异，运用Spearman相关分析检验心理弹性、社会支持和家庭弹性间的相关性，并采用多元线性回归分析罕见病患者心理弹性相关因素。结果 共发放问卷387份，回收有效问卷361份，问卷有效回收率为93.3%。单因素分析显示，不同身体质量指数（BMI）、受教育程度、职业状况、宗教信仰、家庭年收入、治疗阶段、共病和社会保险数量的罕见病群体心理弹性差异存在统计学意义（P<0.05）。相关性分析显示心理弹性与社会支持和家庭弹性呈正相关（rs=0.388、0.632;P<0.001）。多元线性回归结果显示社会支持（β=0.097,95%CI:0.010～0.185,P=0.030）、家庭弹性（β=0.257,95%CI:0.202～0.312,P<0.001）与治疗阶段[维持治疗期比首次治疗期（β=-2.858,95%CI:-4.292～-1.425,P<0.001）；复发治疗期比首次治疗期（β=-4.493,95%CI:-7.042～-1.943,P=0.001）]是罕见病患者心理弹性的影响变量（P<0.05）。结论 罕见病患者心理弹性与社会支持与家庭弹性为正向关联，治疗阶段为负向关联。临床应针对性构建支持体系、提升家庭弹性并实施个性化干预，以改善罕见病患者心理健康与生活质量。 |
| 英文摘要: |
| Objective To explore the current status of psychological resilience and related factors such as social support and family resilience in rare disease patients, and to provide evidence for improving their psychological resilience. Methods A snowball sampling method was used to collect from rare disease patients seven clinical departments, including Dermatology, Hematology, and Respiratory Medicine, across five hospitals in Anhui province from January 1 to April 30, 2025. A questionnaire survey was carried out using a general data questionnaire, the Psychological Resilience Scale, the Social Support Rating Scale, and the Family Resilience Assessment Scale to evaluate patients' basic information, psychological resilience, social support, and family resilience. Mann-Whitney U tests and Kruskal Wallis H tests were used to compare differences in psychological resilience scores among different groups. Spearman correlation analysis was used to test the correlation among psychological resilience, social support, and family resilience. Multiple linear regression was used to analyze the influencing factors of psychological resilience in patients with rare diseases. Results A total of 387 questionnaires were distributed and 361 valid questionnaires were recovered, yielding an effective recovery rate of 93.3%. Univariate analysis showed significant differences in psychological resilience among rare disease groups with different body mass index（BMI）, education level, occupation status, religious belief, annual family income, treatment stage, comorbidities, and number of social insurances（P<0.05）. Correlation analysis showed that psychological resilience was positively correlated with social support and family resilience（rs=0.388,0.632;P<0.001）. Multiple linear regression analysis showed that social support [β=0.097, 95%CI:0.010～0.185), P=0.030], family resilience[β=0.257, 95%CI:0.202～0.312,P<0.001] and treatment stage [maintenance treatment period vs. first treatment period:β=-2.858, 95%CI:-4.292～-1.425,P<0.001;Relapse treatment period vs. first treatment period:β=-4.493, 95%CI:-7.042～-1.943, P=0.001] were significant influencing factors of psychological resilience in patients with rare diseases（P<0.05）. Conclusion The psychological resilience of patients with rare diseases is positively correlated with social support and family resilience, and negatively correlated with the treatment stage. Clinical practice should focus on constructing a targeted social support system, improve family resilience, and formulating individualized interventions to improve the mental health and quality of life of patients with rare diseases. |
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