Psychosocial factors and adherence to treatment in patients with hemophilia. A multicenter study. Multicenter cross sectional study of patients with hemophilia and their families
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.
Study Type
OBSERVATIONAL
Enrollment
200
Hospital Clínico Universitario Virgen de la Arrixaca
Murcia, Murcia, Spain
RECRUITINGAssess the perception of quality of life
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.
Time frame: Screening visit
Assess the perception of illness of the patients
To measure this variable we use the Illness Perception Questionnaire Revised (IPQ-R).
Time frame: Screening visit
Assess anxiety of patients and parents of children with hemophilia.
To evaluate this variable we use the State-Trait Anxiety Inventory (STAI)
Time frame: Screening visit
To assess illness behavior of patients.
To assess this variable we use the illness behaviour questionnaire (IBQ).
Time frame: Screening visit
Assessing coping strategies of patients.
To assess this variable we use the Coping Scale questionnaire.
Time frame: Screening visit
Assess the perception of family functioning of parents of children with hemophilia
To assess this variable we use the Family Functioning Evaluation Scale (FACES III).
Time frame: Screening visit
Assess the perceived stress of parents of children with hemophilia.
To assess this variable we use the Pediatric Inventory for Parents (PIP).
Time frame: Screening visit
Assessing the personality traits of children with hemophilia.
To assess this variable we use the Eysenck Personality Questionnaire Junior (EPQ-J)
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Time frame: Screening visit
Assess adherence to treatment of patients with hemophilia.
To assess this variable we use the Beliefs About Medication Questionnaire (BMQ).
Time frame: Screening visit
Assess the clinical data of the patient
Type of hemophilia (A or B), severity of hemophilia (severe, moderate or mild), treatment type (a demand or prophylaxis), presence of ingibidores, history of hemarthrosis, dosage factor VIII / IX
Time frame: Screening visit
Assess the demographic data of the patient
Age, history of hemophilia in the family, marital status (single, married, divorced), education (university, basic), employment status (unemployed, self-employed, employed by others), distance to hospital
Time frame: Screening visit