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The purpose of this study is to evaluate the effect of a nursing program in patients with cystic fibrosis.
All patients living with cystic fibrosis will be asked by questionnaire before (November 2014) and after (September 2016) the implementation of the program about their satisfaction with treatment, trust in the CF-Team, adherence, self-efficacy, treatment burden and quality of life.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| CF Nursing Intervention | Experimental |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| CF Nursing Program | Other |
|
| Measure | Description | Time Frame |
|---|---|---|
| Difference between baseline patient satisfaction and month 22 | Self-reported patient satisfaction will be measured with a newly developped questionnaire. | month 22 |
| Measure | Description | Time Frame |
|---|---|---|
| Difference between baseline adherence and month 22 | Self-reported adherence to therapy will be measured with the Medication Adherence Report Scale (MARS) and a newly developped questionnaire. | month 22 |
| Difference between baseline self-efficacy and month 22 |
| Measure | Description | Time Frame |
|---|---|---|
| Difference between baseline QoL and month 22 | Self-reported QoL will be measured with the Cystic Fibrosis Questionnaire - revised (CFQ-R) and the VAS of the European Quality of Life Instrument - 5 dimensions (EQ-5D VAS). | month 22 |
Inclusion Criteria:
Exclusion Criteria:
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University Hospital Zurich | Zurich | 8091 | Switzerland |
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| ID | Term |
|---|---|
| D003550 | Cystic Fibrosis |
| ID | Term |
|---|---|
| D010182 | Pancreatic Diseases |
| D004066 | Digestive System Diseases |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
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Self-reported self-efficacy to master the the therapeutic regimen will be measured with a newly developped questionnaire. |
| month 22 |
| Difference between baseline treatment burden and month 22 | Self-reported treatment burden will be measured wiht a subscale of the CFQ-R. | month 22 |
| Difference between baseline trust and month 22 | Self-reported trust will be measured with the short version of the Wake Forest Trust Scale. | month 22 |
| Difference between baseline information need and month 22 | Information needs will be assessed with a subscale of the PICKER-questionnaire for patients with CF. | month 22 |
| D030342 |
| Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D007232 | Infant, Newborn, Diseases |