Psychosocial Factors and Adherence to Treatment in Patients With Hemophilia. A Multicenter Study
试验速览
- 阶段
- 不适用
- 发起方
- 入组人数
- 200
- 试验地点
- 1
- 主要终点
- To assess illness behavior of patients.
研究概览
简要总结
Psychosocial factors and adherence to treatment in patients with hemophilia. A multicenter study. Multicenter cross sectional study of patients with hemophilia and their families
详细描述
Research project whose main objective is to assess adherence and major psychosocial issues affecting patients with hemophilia and their families treated at the Hematology and hemotherapy Services Clinical Hospital Universitario Virgen de la Arrixaca of Murcia and the University Hospital Carlos Haya, Malaga.
The data obtained in this project will identify those psychosocial aspects affecting patients and their families about the disease, its evolution and treatment of it. They will use different psychosocial questionnaires based on scientific evidence and the reliability of these, as well as its specific design for hemophilia patients. The main characteristics of the study are:
- Descriptive study of adherence to treatment of pediatric patients, adolescents and adults with hemophilia.
- Descriptive study of family functioning, perceived stress, anxiety and quality of life in parents of children with hemophilia under 14 years and adolescents with hemophilia, depending on the administered medical treatment, clinical and musculoskeletal patient situation.
- Descriptive study of illness behavior or perception of illness, perceived stress, anxiety, quality of life and coping strategies of young adults with hemophilia, depending on the medical treatment administered, and skeletal muscle clinical situation of the patient.
- Validation of psychosocial assessment tools in patients with hemophilia and their families.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 6 Years 至 75 Years（Child, Adult, Older Adult）
- 性别
- Male
- 接受健康志愿者
- 否
入选标准
- •Patients with hemophilia A or B
- •Patients followed at the Hematology Department of the hospitals included in the study
- •Patients without cognitive disorders
排除标准
- •Patients with other congenital coaguopatías
- •Patients with more than 2 years without going to review your hospital
- •Patients from other provinces of Spain
结局指标
主要结局
To assess illness behavior of patients.
时间窗: Screening visit
To assess this variable we use the illness behaviour questionnaire (IBQ).
Assess the perception of family functioning of parents of children with hemophilia
时间窗: Screening visit
To assess this variable we use the Family Functioning Evaluation Scale (FACES III).
Assess the perception of quality of life
时间窗: Screening visit
The quality of life assessed with the questionnaires: Short Form-36 Health Survey (SF-36) and A36 Hemofilia-QoL for adults; and Child Report Form (CHIP-CE) and Haemo-QoL, for children.
Assess anxiety of patients and parents of children with hemophilia.
时间窗: Screening visit
To evaluate this variable we use the State-Trait Anxiety Inventory (STAI)
Assessing coping strategies of patients.
时间窗: Screening visit
To assess this variable we use the Coping Scale questionnaire.
Assess the perception of illness of the patients
时间窗: Screening visit
To measure this variable we use the Illness Perception Questionnaire Revised (IPQ-R).
Assessing the personality traits of children with hemophilia.
时间窗: Screening visit
To assess this variable we use the Eysenck Personality Questionnaire Junior (EPQ-J)
Assess adherence to treatment of patients with hemophilia.
时间窗: Screening visit
To assess this variable we use the Beliefs About Medication Questionnaire (BMQ).
Assess the perceived stress of parents of children with hemophilia.
时间窗: Screening visit
To assess this variable we use the Pediatric Inventory for Parents (PIP).
次要结局
- Assess the clinical data of the patient(Screening visit)
- Assess the demographic data of the patient(Screening visit)
研究者
ANA TORRES-ORTUÑO
PhD
Universidad de Murcia