Mucoviscidosis
Conditions
Keywords
Cystic fibrosis, Women, Private life, Sexual disorders, Quality of sex life
Brief summary
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.
Interventions
OTHERIntimate quality of life questionnaire
Preparation of an intimate quality of life questionnaire
Sponsors
Hospices Civils de Lyon
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
FEMALE
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Major women with cystic fibrosis * Tracked in the various CRCMs in France, * Having or having had sexual intercourse, * Having previously been informed of the aims and confidentiality of this research and not having opposed their participation.
Exclusion criteria
* Major women with cystic fibrosis whose state of health (acute episode of their disease or worsening phase) does not lend itself to such a collection * Adult women with cystic fibrosis who are unable to receive the information and make a non-objection
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Assessment of specific intimate disorders of patients with cystic fibrosis | 12 months | 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. |
Countries
France
Outcome results
None listed