Cystic fibrosis. Cystic fibrosis
Conditions
Interventions
Intervention 1: Control group: Control group: Members of the Iranian CF Association have a channel and information group on the ETA messenger
in this environment, patients and CF specialists are members
patients visit online and ask their questions to specialists or other members of the organization
for this purpose, to prevent data contamination, sampling is first done for the control group and then for the intervention group. Sampling and intervention are carried out virtually on a shared domes
the control group receives routine care during this period, and after the sampling from the control group is completed, the sampling from the intervention group begins. Intervention 2: Intervention gr
the channel settings are such that participants cannot see the c
Sponsors
Tehran University of Medical Sciences
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: - Greater age equal to 18 years; - A confirmed diagnosis of CF by a physician; - Fluency in Persian and ability to read and write; - The patient resides in Tehran; - Having a smartphone and being able to use it; - Not participating in similar care programs in the past 6 months; - Giving written informed consent to participate in the study.
Exclusion criteria
Exclusion criteria: - Having a diagnosed severe psychiatric illness (such as schizophrenia or active bipolar disorder); - Having severe chronic diseases (severe vital organ failure and active cancer); - History of lung transplantation.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Determining and comparing the average quality of life score of adult patients with cystic fibrosis in the intervention and control groups, before and after implementing a comprehensive care program. Timepoint: At the beginning of the study and 8 weeks after the intervention. Method of measurement: Persian version of the standard and validated Cystic Fibrosis Questionnaire-Revised for ages 14 and older (CFQ-R +14). | — |
Secondary
| Measure | Time frame |
|---|---|
| Determining and comparing the mean clinical symptom scores of adult patients with cystic fibrosis in the intervention and control groups, before and after implementing a comprehensive care program. Timepoint: At the beginning of the study and 8 weeks after the end of the intervention. Method of measurement: Persian version of the standard questionnaire Cystic Fibrosis Respiratory Symptom Diary – Chronic Respiratory Infection Symptom Score (CFRSD-CRISS).;Determining and comparing the average self-management score of adult patients with cystic fibrosis in the intervention and control groups, before and after implementing a comprehensive care program. Timepoint: At the beginning of the study and 8 weeks after the end of the intervention. Method of measurement: Persian version of the Partners in Health (PIH) questionnaire. | — |
Countries
Iran (Islamic Republic of)
Contacts
Public ContactHaleh Jafari
Tehran University of Medical Sciences
Outcome results
None listed