法洛四联症患儿家属手术等候期疾病不确定感状况调查

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摘要目的调查法洛四联症（TOF）患儿家属手术等候期的疾病不确定感状况。方法前瞻性纳入2014年1月至2020年12月湖南省儿童医院择期行手术治疗的200名TOF患儿家属，于TOF患儿等候期采用疾病不确定感父母量表（PPUS）评估家属的疾病不确定感状况，根据疾病不确定感调查水平进行分组（高水平组与低水平组）。设计基线资料调查表，统计所有TOF患儿及家属的基线资料，纳入全部可能因素，经单因素及多因素分析找出TOF患儿家属手术等候期疾病不确定感影响因素。结果 200名家属均伴有不同程度疾病不确定感，其中148名为高水平，占74%；52名低水平，占26%。两组患儿首次入院、家属受教育程度、家庭人均月收入、家属SSRS评分比较，差异有统计学意义（P ＜ 0.05）。患儿首次入院、家属受教育程度初中及以下、家庭人均月收入低、社会支持低均是TOF患儿家属手术等候期疾病不确定感高水平的影响因素（OR ＞ 1，P ＜ 0.05）。结论 TOF患儿家属手术等候期伴有不同程度疾病不确定感，其中多数家属疾病不确定感呈高水平，可能与患儿首次入院、家属受教育程度初中及以下、家庭月收入低、家属社会支持低有关。

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	滕思思陈思彭丽红

关键词 ：法洛四联症, 手术, 等候期, 疾病不确定感, 受教育程度, 收入, 社会支持

Abstract：Objective To investigate the uncertainty of illness in the family members of children with trilogy of Fallot (TOF) during the waiting period for surgery. Methods Prospectively enrolled 200 family members of children with TOF who underwent elective surgical treatment in Hunan Children’s Hospital from January 2014 to December 2020. The parents of children with TOF were evaluated by the parent’s perception uncertainty in illness scale (PPUS) during waiting period. According to the survey level of disease uncertainty, they were divided into high-level group and low-level group. This article designed a baseline data questionnaire, counted the baseline data of all children with TOF and their families, included all possible factors, and the factors influencing the uncertainty of illness in the family members of children with TOF during the operation waiting period were found out through univariate and multivariate analysis. Results The 200 family members were all associated with varying degrees of disease uncertainty, of which 148 had a high level, accounting for 74%; and 52 had a low level, accounting for 26%. There were statistically significant differences between the two groups of children’s first admission, education level of family members, family monthly income per capita, and family members’ SSRS scores (P ＜ 0.05). Children’s first admission, family members’ education level of junior high school or below, low family monthly income, and low social support were all influencing factors for the high level of illness uncertainty in the waiting period of TOF children’s family members (OR ＞ 1, P ＜ 0.05). Conclusion Family members of children with TOF have varying degrees of disease uncertainty during the waiting period for surgery, and most of the family members have high levels of disease uncertainty. It may be related to the first admission of the child to the hospital, the family’s education level of junior high school or below, low family monthly income, and low family support.

Key words： Trilogy of Fallot Operation Waiting period Uncertainty of illness Education level Income Social support

引用本文:

滕思思陈思彭丽红. 法洛四联症患儿家属手术等候期疾病不确定感状况调查[J]. 中国医药导报, 2021, 18(26): 50-53.
TENG Sisi CHEN Si PENG Lihong. Survey of illness uncertainty in family members of children with trilogy of Fallot in the waiting period for operation. 中国医药导报, 2021, 18(26): 50-53.

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