白血病患儿自我报告健康结局与家庭管理方式的相关性研究

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1、 单 位 代 码 10475 学号 104753141236 分类号 R47 硕 士 学 位 论 文硕 士 学 位 论 文 白血病白血病患儿自我报告患儿自我报告健康结局与家庭管理方式健康结局与家庭管理方式的相关的相关 性性研究研究 学 科 、 专 业 ： 护理学 研 究 方 向 ： 护理管理与临床护理 申请学位类别 ： 医学硕士 申请人 ： 竟征 指 导 教 师 ： 郭燕 主任护师 二一七 年 五 月 CORRELATION STUDY ON THE PEDIATRIC SELF-REPORTED HEALTH OUTCOMES AND FAMILY MANAGEMENT AMONG CHIL

2、DREN WITH LEUKEMIA A Dissertation Submitted to the Graduate School of Henan University in Partial Fulfillment of the Requirements for the Degree of Master of Medicine By ZhengJing Supervisor:Prof.YanGuo May, 2017 I 摘 要 目的目的 了解白血病患儿自我报告健康结局：情绪健康结局、症状结局、社会健康结局、身 体功能结局的现状，分析其各自的影响因素；了解患儿家庭管理方式的现状；探讨自我

3、报告健康结局与家庭管理方式之间的关系。 为提高白血病患儿日常照护水平， 帮助医护 人员制定白血病患儿的个体化临床决策提供依据。 方法方法 采用便利抽样方法，选取 2015 年 9 月-2016 年 3 月期间位于郑州市三所三级甲等 医院血液科的 8-17 岁白血病患儿及其家长各 280 例，研究工具：(1)自行设计的一般资 料调查表；(2)中文版儿童报告版癌症相关简表(3)中文版家庭管理测量量表。运用 Epidata3.1 进行数据录入，SPSS17.0 进行统计学分析，运用描述性统计分析评估患儿自 我报告健康结局、家庭管理方式的现况；运用的统计学方法：t 检验，ANOVA，Pearson 相

4、关分析，非条件二分类 Logistic 回归分析。 结果结果 1. 患儿自我报告健康结局得分状况：情绪健康结局总分(48.31 8.12)处于临界值， 其中抑郁情绪得分最高（49.82 9.98）。症状结局总分高于临界值（50.89 9.27），其 中疼痛症状得分最高（51.67 11.25）。社会健康结局总分（42.83 6.77）及身体功能结 局总分（43.02 6.42）低于标准临界值，其中上肢功能得分最低（42.43 7.48）。 2. 家庭管理方式得分状况：家庭管理方式总分（175.28 14.83）处于中间值。父母 疾病管理困难状况（46.95 7.75）、父母疾病担心状况（33.

5、66 4.79）及父母疾病精力 消耗状况（15.03 2.95）高于中间值；父母疾病管理能力（39.72 4.63）、父母相互支 持状态（24.85 8.14）及患儿日常生活状况（15.07 3.64）得分处于中间值。 3. 白血病患儿自我报告健康结局的单因素分析结果：患儿不同住院次数、不同家 庭月收入等因素分别在情绪健康结局上的得分差异有统计学意义(P0.05)； 年龄在13-17 岁的患儿情绪健康结局得分高于 8-12 岁的患儿(P0.05)。患儿不同治疗阶段、父亲不同 文化程度、 母亲不同文化程度、 母亲不同职业状态等因素在症状结局上得分差异有统计 学意义(P0.05)；治疗期的白血病患

6、儿症状结局大于无进展生存期的患儿(P0.05)。患 I 儿不同性别、是否为独生子女、不同治疗阶段、母亲不同职业状态等因素在社会健康结 局上得分差异有统计学差异(P0.05)；其中男性患儿的同伴关系得分大于女性患儿 (P0.05)。患儿不同治疗阶段、不同患病时间在身体功能结局上得分差异有统计学意义 (P0.05)； 其中患病时间大于 2 年的患儿身体移动性功能大于患病时间小于 2 年的患儿。 4. 家庭管理方式的单因素分析结果：不同住院次数、父亲文化程度、家庭月收入、 费用支付方式等在家庭管理方式总得分上差异有统计学意义(P0.05)。患儿不同患病时 间、家庭月收入、母亲职业状态等在患儿日常生活

7、状况上得分差异有统计学意义 (P0.05)，母亲是非在职状态（离职或家庭主妇）时患儿日常生活状况得分高于母亲是 在职状态时的得分(P0.05)。不同居住地、是否为独生子女在父母疾病管理困难状况上 得分差异具有统计学意义(P0.05)。 5. Pearson 相关分析结果：患儿身体功能结局与患儿日常生活状况、父母疾病管理 能力及父母相互支持状况呈现正相关(P0.05)，与父母疾病管理困难、父母疾病担心状 况及父母疾病精力消耗呈现负相关(P0.05)，情绪健康结局与患儿日常生活、父母疾病 管理能力及父母相互支持状况呈现负相关(P0.05)。患儿情绪健康结局、症状结局与父 母疾病管理困难状况呈现正相

8、关(P0.05)，患儿身体移动性功能、上肢功能与父母疾病 管理困难呈现负相关(P0.05)。 6. 白血病患儿自我报告健康结局的二分类 Logistic 回归分析结果： 父母疾病管理困 难，家庭收入是自我报告情绪结局的预测因子；患儿日常生活，父亲文化水平时自我报 告症状结局的预测因子； 患儿日常生活是社会健康结局的预测因子； 患病时间是身体功 能结局的预测因子。 结论结论 1. 白血病患儿存在负性情绪倾向，且抑郁情绪倾向最为明显。患儿疼痛、疲劳症状 较为突出，社会健康结局水平较低，身体功能因疾病而受损，患儿健康状态较差。家庭 收入，疾病管理困难对于自我报告情绪健康结局存在影响。患儿日常生活、家

9、庭月收入 是自我报告症状结局存在影响。 患儿日常生活趋向于正常， 其自我报告社会健康结局不 良的发生率低于非正常生活状况。 患儿不同患病时间对于自我报告身体功能结局影响较 大。 2. 白血病患儿家庭管理方式属于忍耐型， 疾病管理处于中等偏低水平， 家庭管理状 态不乐观。 III 3. 白血病患儿情绪健康结局，社会间结局与家庭管理方式呈现正相关。白血病患 儿父母疾病管理能力的提高有助于患儿降低抑郁、焦虑状态，负性情绪表现越不明显； 而父母认为管理疾病越困难，精力消耗越多，患儿负性情绪结局及疲劳症状越明显。因 此，促进家庭管理方式向积极乐观的方向发展，有助于降低不良结局的发生率，帮助患 儿缓解疾病

10、不适症状，从而提高患儿生活质量，促进良好的健康状态。 关键词：白血病患儿，自我报告，健康结局，家庭管理，生活质量 V ABSTRACT Objective To understand the health outcomes of children with leukemia: the outcome of emotional health, the outcome of the disease, the social health outcome, the status of the physical function of the outcome, analyze their influen

11、cing factors, To understand the current situation of family management; to explore the relationship between self-reported health outcomes and family management. To understand the factors affecting the decline of childrens health status, in order to improve the level of daily care for children with l

12、eukemia, and help health care workers developing individualized clinical decision-making of leukemia. Method Using the convenience sampling method, we respectively selected 280 cases of children aged 8-17 years and their parents in the Department of Hematology of Zhengzhou City from three hospitals

13、of three first class hospital during September 2015 to March 2016. The research tools were as follows: (1) the self-designed general situation questionnaire;(2)Chinese Version of Child-Reported Cancer Related Pediatric Patient-Reported Outcomes Measure Information System(3) Chinese version of the fa

14、mily management measurement scale.Statistical methods: t test, ANOVA, Pearson correlation analysis, Binary Logistic regression analysis. Result 1. Health-related outcomes of self-report scores:The total score of emotional health outcomes (48.31 8.12) was at the critical value,and the depression scor

15、e(49.82 9.98)was the highest in it.Symptoms VI score(50.89 9.27)was slightly higher than standard threshold , the symptom of Pain score was the highest (51.67 11.25).The total score of social health outcomes(42.83 6.77)and Physical function(43.02 6.42)all were lower than standard threshold,the upper

16、 limb function score(42.43 7.48)was the lowest. 2. Family management style scores:The scores of disease-related concerns(33.66 4.79), disease management difficulties(46.95 7.75), energy consumption(15.03 2.95)were higher.The scores of childrens daily life(15.07 3.64), disease management capacity(39.

17、72 4.63) and parents support with each other(24.85 8.14) were in the middle of the range.The total score on Family management measure was in the median. 3. The results of univariate analysis for C-C-Pediatrics PROMIS was showed as follows: The score on emotional health outcomes could distinguish the

18、 significant exist among childrens age, hospitalization and household income (P 0.05).The scores of emotional health outcomes and depression scores were higher for children aged 13-17 than children aged 8-12 (P0.05).The score on symptoms outcomes could distinguish the exist between different grades

19、of fathers , pediatric different stages of treatment (P0.05).The scores on fatigue symptoms and pain symptoms of children with leukemia were significantly higher than those without progression-free survival (P0.05). The score on social health outcomes could distinguish the exist between different ge

20、nder, different stages of treatment, different occupations state of their mothers(P0.05); the score of peer relationship in male Patients was higher than female patients (P0.05).The score on physical function could distinguish the exist of the different treatment stages and the period of disease pro

21、cess (P0.05).The physical mobility of children whose disease process was more than 2 years was better than the the children whose disease process was less than 2 years. VII 4. The results of univariate analysis of family management measure patterns in children with leukemia:The results of univariate

22、 analysis showed that the difference of hospitalization, fathers education, family income and cost payment method were Statistically significant(P0.05). There were significant differences in childrens daily living condition (P0.05) between the different sick time, family monthly income, mothers prof

23、essional status.when the mother was in a non-working state (leaving or housewife) , the child s daily life status score was higher than when the mother was on daily work status(P0.05). There were significant differences in the scores of parents disease management difficulties for different residence

24、 areas and whether they were only children (P0.05 5. The results of pearson correlation analysis analysis:The physical function of children with leukemia had significant respectively positive correlation with the daily life status of the children, management ability of the parents and the mutual sup

25、port of the parents(P0.05), and had negative correlation with parental disease management, parental disease worry and parental disease energy consumption (P0.05).The emotional health outcomes were negatively correlated with childrens daily life, parents disease management ability and Parental suppor

26、t status (P0.05). The difficult of disease management was showed the positive correlation with emotional health outcomes and symptoms outcomes(P0.05). 6. The results of Binary Logistic regression analysis of self-reported healthy outcomes in children with leukemia: the factors that family income, di

27、sease management difficulties are predictors of the emotion outcome. The factors that the daily life status of children, fathers educational level are predictors of the symptom outcome. The factors that childrens daily life is the predictor of social health outcomes.The factors that time of illness

28、is the predictor of the body function outcomes. Results VIII 1. Leukemia children self-reported emotional health outcomes at a critical level, children with negative emotional tendencies, and the most obvious tendency to depression. Children with pain, fatigue symptoms are more prominent, lower leve

29、ls of social health outcomes, physical function damage due to disease, children with poor health status. Family income, daily life status of children, parental disease management capacity status, parental disease fears and family management methods have an impact on self-reported emotional health ou

30、tcomes. Mothers occupational status, mothers cultural level, disease treatment stage, childrens daily living conditions, disease energy consumption, disease management difficulties, and disease worry status have an impact on self-reported symptoms. Whether the children are the only child, gender, mo

31、thers occupational status, treatment stage, family management method, parents worry about the situation, parents support each other, parental energy consumption, childrens daily living conditions for self-reported social health outcomes The The duration of illness, the stage of treatment, the status

32、 of parental support, the state of energy consumption, the status of disease management and the daily living conditions of children have an impact on the outcome of self-reported physical function. 2. The family management mode of leukemia children is patient type, and the disease management is in t

33、he middle level, and the family management status is not optimistic. 3. The emotional health outcomes and social health outcomes of leukemia children were positively related to the family management style. The improvement of parental disease management ability in children with leukemia is helpful fo

34、r children to reduce depression, anxiety and negative emotions, and parents think that the more difficult the disease is managed, the more energy is consumed, The worse negative emotional outcome and fatigue symptoms outcome. Therefore, the promotion of family management to a positive and optimistic

35、 direction, helps to reduce the incidence of adverse IX outcomes, to help children relieve symptoms of disease, thereby improving the quality of life of children and promote good health. KEY WORDS:Children with leukemia, self-report, health outcomes, family management, quality of life XI 英汉缩略语名词对照 目

36、 录 摘 要 . I ABSTRACT .V 英汉缩略语名词对照 . XI 目 录 .XIII 1 前 言 . 1 1.1 研究背景 . 1 1.1.1 儿童自我报告健康结局与生活质量 . 1 1.1.2 家庭管理方式与健康结局 . 3 1.2 研究目的 . 4 1.3 研究意义 . 4 1.4 操作性定义 . 5 2 研究对象与方法 . 7 2.1 研究对象 . 7 2.1.1 研究对象纳入及排除标准 . 7 2.1.2 样本量 . 7 2.2 研究方法 . 7 2.2.1 研究工具 . 7 2.2.2 调查方法 . 9 2.3 质量控制 . 9 2.4 统计处理 . 10 2.5 伦理原则

37、 . 10 2.6 研究路线 . 11 3 结果 . 13 3.1 一般资料 . 13 3.1.1 患儿的一般人口学资料及疾病资料 . 13 XIV 3.1.2 患儿父母及家庭状况的一般资料 . 14 3.2 白血病患儿自我报告健康结局得分现状 . 15 3.3 白血病患儿自我报告健康结局的单因素分析 . 15 3.3.1 患儿一般人口学资料与疾病状况的分析 . 15 3.3.2 父母一般资料及家庭状况的分析 . 19 3.4 白血病患儿家庭管理方式得分现状 . 22 3.5 白血病患儿家庭管理方式的单因素分析 . 23 3.5.1 患儿不同人口学资料的家庭管理方式总分比较 . 23 3.5.2 患儿不同疾病资料的家庭管理方式总分比较 . 24 3.5.3 父母及家庭一般资料的家庭管理方式总分比较 . 25 3.5.4 患儿不同人口学资料的家庭管理方式各分量表得分比较 . 26 3.5.5 患儿不同疾病资料的家庭管理方式各分量表得分比较 . 26 3.5