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| ID | Type | Description | Link |
|---|---|---|---|
| 2019-A01988-49 | Other Identifier | ID-RCB |
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The intimate life of patients with cystic fibrosis has not been the subject of specific research, it is even left behind in favor of respiratory, digestive or endocrinological dysfunctions endangering these patients. After 16 years of practice, it is significant that this subject is problematic, painful but difficult to tackle; No doubt just as much on the side of caregivers: this question has never found its way into team exchanges, it seems to be evaded doubtless difficult or too intimate to welcome. These disorders arise from the effects of the disease on the health of the mucous epithelial tissues also located in the genital area. These difficulties are more closely approached by the difficulties of procreation; PMA allows them to get around them, nevertheless making it possible to be a parent, with the residual frustration of a satisfactory sex life: a deaf "addition", adding to many care constraints.
It is therefore in terms of sexual health and quality of sexual life that it is desirable to shed light on this aspect of cystic fibrosis in women.
Bibliographic research confirms this approach: this subject is not explored, the rare publications concern the vulnerability of the cervix or the difficulty on both sides of tackling this subject.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Women with cystic fibrosis | Women with cystic fibrosis |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Intimate quality of life questionnaire | Other | Preparation of an intimate quality of life questionnaire |
|
| Measure | Description | Time Frame |
|---|---|---|
| Assessment of specific intimate disorders of patients with cystic fibrosis | Passing a questionnaire to assess patients' intimate quality of life. The responses to binary qualitative variables will be described by proportions. The responses to the 5-modality ordinal qualitative variables will be described by the median and the range (minimum and maximum). Continuous quantitative variables will be described by the mean and its standard deviation. | 12 months |
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Inclusion Criteria:
Exclusion Criteria:
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Adult patients with cystic fibrosis
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| Name | Affiliation | Role |
|---|---|---|
| Françoise SIMONNET-BISSON | Hospices Civils de Lyon | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Hôpital Lyon Sud - CRCM adultes, médecine interne | Pierre-Bénite | France |
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| ID | Term |
|---|---|
| D003550 | Cystic Fibrosis |
| D012735 | Sexual Dysfunction, Physiological |
| ID | Term |
|---|---|
| D010182 | Pancreatic Diseases |
| D004066 | Digestive System Diseases |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
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| D030342 |
| Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D007232 | Infant, Newborn, Diseases |
| D000091662 | Genital Diseases |
| D000091642 | Urogenital Diseases |