重庆市性早熟儿童生活质量现状及其影响因素研究

　　摘要

　　背景：

　　儿童性早熟发病率逐年上升，已成为儿童常见内分泌疾病之一。

　　性早熟表现为第二性征提前出现，导致患儿身体外形改变；同时过早进入青春期影响患儿骨骼生长，造成成年身材矮小。促性腺激素释放激素类似物（Gonadotropin-releasing Hormone Analogs, Gn RHa）作为性早熟的主要用药，其改善患儿最终成年身高的作用毋庸置疑。但药物治疗周期长，疾病所致的肥胖、乳房增大等身体外形改变，以及每日皮下注射生长激素的痛苦给患儿生活各方面带来不同程度影响，对患儿社会心理健康产生影响，最终影响患儿生活质量。即使成年后，经历过性早熟的儿童相较于健康儿童更易表现出酗酒、吸毒等不良行为。

　　但目前临床关注多侧重关注Gn RHa治疗对患儿最终成年身高的改善，对其生活质量评价的研究较少。因此本研究采用量性与质性研究相结合的方法，分析特发性中枢性性早熟（Idiopathic Central PrecociousPuberty, ICPP）儿童生活质量现状及其影响因素，为临床全方面提高性早熟儿童生活质量提供理论依据。

　　目的：

　　1.通过与正常儿童比较，了解ICPP儿童生活质量现状；探讨一般资料问卷、儿童自我意识以及家庭影响对ICPP儿童生活质量的影响，为后期提高ICPP儿童生活质量提供理论基础。

　　2.采用病例对照的方法，探究ICPP与生活质量的关系。

　　3.针对量性研究结果有意义的部分，运用描述性质性研究的方法深入探讨ICPP儿童生活质量降低的原因。

　　方法：

　　1.病例对照研究：病例组采用便利抽样法，选取2019年4月至9月在重庆医科大学附属儿童医院门诊接受治疗的134例5～12岁ICPP儿童及其照护者；同期选择在重庆市市区某两所小学就读的210例正常发育、无慢性疾病的正常儿童及其照护者为对照组，匹配原则：同性别、同年龄、长期居住地为重庆。采用自制一般资料问卷、Peds QLTM4.0儿童生存质量普适性核心量表、家庭影响模块量表、自我意识量表对儿童及其照护者进行调查。

　　2.描述性质性研究：前期量性研究结果表明，处于未就业状态的照护者其孩子生活质量更低，本研究中处于未就业状态的照护者多属于全职太太。因此运用目的抽样方法，选取2020年9月至12月在重庆医科大学附属儿童医院门诊就诊的15名ICPP儿童的照护者作为研究对象，照护者满足全职太太标准。围绕ICPP儿童照护体验对其进行半结构式访谈，利用NVIVO 11.0质性分析软件整理资料、Colaizzi’s 7步分析法分析资料。

　　结果：

　　1.量性研究部分共发放问卷364份，排除无效问卷20份，最终病例组收回134份，对照组收回210份。两组儿童在身高、BMI变量上存在显着差异，与ICPP的临床表现有关。两组儿童在是否独生子女、照护者文化程度、照护者职业类型、家庭月收入变量上差异有统计学意义，符合ICPP流行病学特征。

　　2.相较于对照组儿童，ICPP儿童生活质量下降（83.28±11.22 vs86.87±7.59, P<0.05），尤其是情感维度受到较大影响。ICPP儿童自我意识处于较低水平（57.34±12.53 vs 61.41±10.40, P<0.05），其中在躯体外貌与属性维度差异最大。ICPP对患儿照护者生活质量及家庭功能产生消极影响（70.95±14.41vs 80.07±13.98, P<0.05）。

　　3. ICPP儿童生活质量各个维度受到多个因素影响：患儿照护者处于未就业状态、患儿对自我躯体外貌与属性的负性认知越多、焦虑程度越重，其情感功能越差，可解释情感功能评分的21.5%（F=13.156,P=0.000）；患儿年龄越小、单独用药组的患儿、患儿对自我躯体外貌与属性的负性评价越多、越不合群，其社交功能越差，可解释社交功能评分的29.3%（F=14.756,P=0.000）；患儿年龄越小、患儿对自我智力与学校情况评价越差、焦虑程度越重，以及疾病对患儿照护者生活质量影响越大，其学校表现越差，可解释学校表现评分的26.8%（F=13.180,P=0.000）；患儿年龄越小、患儿对自我躯体外貌与属性的负性评价越多、焦虑程度越重，以及疾病对患儿照护者生活质量影响越大，其社会心理健康越差，可解释社会心理评分的33.8%（F=17.979,P=0.000）；患儿年龄越小、患儿对自我躯体外貌与属性的负性评价越多、焦虑程度越重，以及疾病对患儿照护者生活质量影响越大，其整体生活质量水平越差，可解释生活质量总分评分的36.0%（F=19.684,P=0.000）。

　　4.生活质量中的社会心理得分高的儿童，发生ICPP的风险减低（OR=0.945, 95% CI: 0.916～0.975）。

　　5.全职太太在照顾ICPP儿童期间的照护体验包括：心理体验复杂、社会支持单薄、照顾负担较重3个主题。心理体验复杂包括：担心与焦虑、困惑与郁闷、接受与信任；社会支持单薄包括：客观支持为单一的信息支持、主观支持多为消极性。照顾负担较重包括：照护者日常生活受到负面影响、家庭经济负担加重、疾病管理难度加大。

　　结论：

　　1. ICPP儿童生活质量下降，尤其是情感功能受到较大影响。ICPP儿童自我意识处于较低水平，使其行为、学习、社会能力受到不良影响。ICPP对患儿照护者生活质量、家庭功能产生消极影响。

　　2.年龄、药物治疗类型、照护者职业类型；ICPP儿童自我意识中对自我躯体外貌与属性的评价、对自我智力与学校情况评价、合群、焦虑程度，以及照护者生活质量水平是ICPP儿童生活质量的主要影响因素。

　　3.不良的家庭环境因素可能导致儿童社会心理压力增高，从而引起神经—心理方面的病态表现，致使ICPP发生的风险增高。

　　4.全职太太在照顾ICPP儿童期间，不良心理情绪体验较多；同时全职太太多独自一人承受着患儿琐碎、繁重的疾病日常管理，照顾负担重，而薄弱的社会支持系统不能对处于疾病应激状态下的个体提供适当保护，反而加重个体负性情绪体验，严重影响患儿护理质量，最终降低患儿生活质量。

　　关键词 ：    性早熟，生活质量，病例对照，影响因素，质性研究。

　　ABSTRACT

　　Background:

　　Precocious puberty (PP) has become one of common endocrinediseases because of its high incidence in recent years, which clinicallydefined as the early appearance of secondary sexual characteristics beforeage 8 in girls and age 9 in boys. PP mainly influences patients’ final adultheight, gonadotropin-releasing hormone analogs (Gn RHa) is standardtreatment for PP, its effect on final adult height is obvious. However,long-term treatment, obesity and breast development caused by the diseaseand feelings of pain from growth hormone injection everyday to someextent impact patients’ social and mental health, ultimately impair theirquality of life (Qo L). Children experienced PP were more likely to expressalcoholism and drug abuse than healthy children in adulthood. Numerousstudies focused on improving patients’ final adult height, but the evaluationof their Qo L is rarely reported. Therefore, this study aims to explore theQo L of children with idiopathic central precocious puberty (ICPP), and tofind the influencing factors of Qo L using both quantitative and qualitativestudies. These findings can provide theoretical support for clinical staff in improving patients’ Qo L.

　　Objective:

　　1. To investigate the Qo L of ICPP patients compared with normalchildren, and to find the impact of demographic questionnaire, familyimpact and self-concept on Qo L of ICPP patients.

　　2. To analyze the relationships between Qo L of ICPP according to thecase control study.

　　3. According to the quantitative research results, the study aims tofind the reason of low Qo L in children with ICPP.

　　Methods:

　　1. Case-control study: A case group of 134 ICPP patients aged 5 to 12years and their caregivers were recruited from Children’s Hospital ofChongqing Medical University from April to September 2019 using theconvenience sample method. A total of 210 participants were selected ascontrols at the same time with the matching principles of same gender andage and all the participants lived in Chongqing. All the participantscompleted the demographic questionnaire, Peds QLTM4.0 General CoreModule, Peds QLTMFamily Impact Module and Piers-Harris Children’sSelf-concept Scale.

　　2. Descriptive qualitative research: Previous quantitative researchshowed that ICPP patients cared by unemployed caregivers had a lowerQo L, unemployed caregivers were mainly housewives in this study.Therefore, a total of 15 main caregivers of ICPP patients were recruitedfrom Children’s Hospital of Chongqing Medical University using thepurposive sampling method, main caregivers meet the criterion ofhousewives. The care experience of housewives in caring a children withICPP was interviewed by a semi-structured questionnaire. Data wasanalyzed and summarized according to Colaizzi’s 7-step analysis methodwith NVIVO 11.0 software.

　　Results:

　　1. A total of 344 participants were included in the final analysis with20 participants excluded, of whom 134 were in study group and 210 werecontrols. Variables of height and BMI were different between the twogroups (P<0.05), which accord with the clinic manifestation of ICPP.

　　number of children, parents’ educational level, employment status, andfamily monthly income were significantly different between the two groups(P<0.05) , which accord with epidemiologic characteristics of ICPP.

　　2. Children with ICPP scored significantly lower than controls in alldomains of GCS except physical functioning. In particular, the two groupswere significantly different in emotional functioning scores (77.39±17.97vs 84.12±14.35, P<0.001). ICPP patients had lower level of self-conceptcompared with healthy children (57.34±12.53 vs 61.41±10.40, P<0.05),especially in the domain of physical appearance and attributes was significantly different. ICPP had a negative impact on Qo L of caregiversand family functioning (70.95±14.41vs 80.07±13.98, P<0.05).

　　3. There were multiple factors associated with HRQo L of ICPPpatients. Age of patients, type of medical treatment, employment status ofcaregivers, physical appearance and attributes, anxiety, intellectual andschool status, gregariousness and Qo L of caregivers were all significantlyassociated with some of domains of GCS in case group (all P<0.05).

　　4. Higher score of psychosocial health in children indicated lowerincidence of ICPP (OR=0.945, 95% CI: 0.916～0.975).

　　5. The care experience of housewives in caring a child with ICPP wasas follows: complicated psychological experience, weak social support andheavy care burden. Among them, the complicated psychological experienceincluded: worry and anxiety, confusion and depression, acceptance andtrust. The weak social support included: objective support is mostlyinformation support, negative subjective support. The heavy care burdenincluded: daily life was influenced by ICPP, heavy financial burden,difficulties of disease management.

　　Conclusions:

　　1. ICPP patients have low Qo L, especially in emotional functioning.ICPP patient’s self-concept is at a lower level, which affects patients’behavior, study and social ability. ICPP has a negative impact on the Qo Lof parents and family functioning.

　　2. Younger patients treat with Gn RHa, employment status ofcaregivers, negative awareness of physical appearance and attributes,anxiety, gregariousness and intellectual and school status, negative impacton Qo L of caregivers were associated with lower Qo L in children withICPP.

　　3. Unhealthy family circumstances aggravate high pressure of mentaland social in children, which made neuropsychological disfunction,ultimately caused ICPP.

　　4. Housewives have more bad emotions when caring a child with ICPP,and they also are responsible for the disease management of patient alonealone, weak social support can not provide protection for them under thecondition of disease stress, but aggravate their negative emotionalexperience, seriously affect the quality of nursing, and ultimately reducethe Qo L of children with ICPP.

　　Key words :      precocious puberty, quality of life, case-control study,influential factors, qualitative research。

　　前言

　　1、 研究背景。

　　1.1、 儿童性早熟发病率逐年上升。

　　性早熟（Precious Puberty, PP）是指女孩在8岁前，男孩在9岁前出现第二性征的发育，按下丘脑-垂体-性腺轴（Hypothalamic-Pituitary-Gonadal Axis, HPGA）功能是否提前发动分为中枢性性早熟和外周性性早熟，前者中未能发现器质性病变的，称为特发性中枢性性早熟（Idiopathic Central Precocious Puberty, ICPP），约占性早熟病例的60%，男女发病比例约为15:1～20:1[1-2]。1982年美国促进儿童健康与人类发展研究所调查显示性早熟全球发病率为1/5000～1/10 000[3]，但近年来西方国家移民数量的上升、国际儿童收养数量的剧增，导致性早熟发病率明显上升。一项丹麦横断面调查显示1961年性早熟发病率为4.5每百万人，而1993年至2001年，丹麦女童性早熟发病率上升至0.2%，男童发病率较低，为1～2/1 000[4]。韩国的一项调查显示，韩国9岁以下女童性早熟发病率从2008年的每年89.4人每10万人上升至2014年每年415.3人每10万人[5]。我国经济高速发展和生活方式改变，儿童性早熟发病率逐年上升。2013年中国儿童性发育现状调查显示我国性早熟发病率约为0.43%[6]，且发病率存在明显地区差异，北京、天津等经济发达地区发病率甚至高达1.00%[7-8]。

　　【由于本篇文章为硕士论文，如需全文请点击底部下载全文链接】

　　第一部分  重庆市性早熟儿童生活质量现状及其影响因素的量性研究

　　1、研究目的

　　2、对象与方法.

　　3、结果.

　　4、讨论

　　5、小结.

　　第二部分  重庆市性早熟儿童生活质量影响因素的质性研

　　1、研究目的

　　2、对象与方法

　　3、结果

　　4、讨论.

　　5、小结

　　全文总结

　　（1）ICPP儿童生活质量下降，尤其是情感功能受到较大影响。ICPP儿童自我意识处于较低水平，使其行为、学习、社会能力受到不良影响。ICPP对照护者生活质量、家庭功能产生消极影响。

　　（2）年龄、药物治疗类型、照护者职业类型；ICPP儿童自我意识中对自我躯体外貌与属性的评价、对自我智力与学校情况评价、合群、焦虑程度，以及照护者生活质量水平是ICPP儿童生活质量的主要影响因素。

　　（3）不良的家庭环境因素，可能导致儿童社会心理压力增高，从而引起神经—心理方面的病态表现，致使ICPP发生的风险增高。

　　（4）全职太太在照顾ICPP儿童期间，不良心理情绪体验较多，而社会支持的薄弱加重其负性情绪的体验；同时全职太太多独自一人承受着患儿琐碎、繁重的疾病日常管理，照顾负担重，严重影响患儿护理质量，最终降低患儿生活质量。

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