Background
Methods
Study protocol
Unmet needs questionnaire
Statistical analysis
Results
Patients characteristics
Variables | |
---|---|
Male | 35 (70%) |
Age (years) | 27.6 ± 8.7 |
BMI (kg/m2) | 21.8 ± 3.3 |
Smoker | 5 (9.8%) |
Employment status | |
Student | 14 (27.4%) |
Working | 25 (49.0%) |
None | 16 (32.0%) |
Family status | |
Maried/cohabiting | 33 (67.3%) |
Living with their parents | 16 (32.6%) |
Comorbid illnesses | |
Pancreatic insufficiency | 40 (80.0%) |
Diabetes | 17 (34.0%) |
Depression | 8 (15.7%) |
Symptoms | |
Chronic cough | 40 (80.0%) |
Chronic expectoration | 45 (90.0%) |
Dyspnea | 26 (52.0%) |
Exacerbation in the last year | 35 (70.0%) |
Number of episodes per patient | 2.3 ± 1.4 |
SGRQ | |
Total | 25.5 ± 17.3 |
Impact | 19.7 ± 15.8 |
Activity | 33.8 ± 21.0 |
Symptoms | 45.0 ± 20.6 |
Variables | |
---|---|
Spirometry | |
FEV1, % predicted | 64 ± 30 |
6-Min walk distance | |
Distance, m | 562 ± 86 |
Minimal saturation, % | 92 ± 7 |
Blood gases on air | |
PaO2, mmHg | 87 ± 20 |
PaCO2, mmHg | 39 ± 5 |
Chronic colonisation | |
Pseudomonas aeruginosa | 20 (40.0%) |
Staphylococcus aureus | 37 (74.0%) |
Achromobacter xylosoxidans | 2 (4.0%) |
Stenotrophomonas maltophilia | 1 (2.0%) |
Microbiological data at inclusion (n = 42, sputum) | |
Pseudomonas aeruginosa | 17 (40.5%) |
Staphylococcus aureus | 32 (76.2%) |
Achromobacter xylosoxidans | 1 (2.4%) |
Unmet needs
Domains | Requested domains | Prime domains | ||
---|---|---|---|---|
Social and familial life | ||||
Family | 2 | 4.0% | 0 | 0.0% |
Couple | 3 | 6.0% | 0 | 0.0% |
Children | 2 | 4.0% | 0 | 0.0% |
Friends | 3 | 6.0% | 0 | 0.0% |
Romantic encounter | 1 | 2.0% | 0 | 0.0% |
Risky driving | 2 | 4.0% | 0 | 0.0% |
To have a child | 8 | 16.0% | 4 | 8.0% |
To discuss of specific illness | 1 | 2.0% | 0 | 0.0% |
Professional life | ||||
Study/job | 9 | 18.0% | 2 | 4.0% |
Internship abroad | 1 | 2.0% | 1 | 2.0% |
Sick leave | 2 | 4.0% | 1 | 2.0% |
Social rights | 2 | 4.0% | 1 | 2.0% |
Revenues | 3 | 6.0% | 0 | 0.0% |
Mutual insurances | 4 | 8.0% | 2 | 4.0% |
Transports | 3 | 6.0% | 0 | 0.0% |
Sexual life | ||||
Libido | 4 | 8.0% | 0 | 0.0% |
Body image | 3 | 6.0% | 0 | 0.0% |
Shortness of breath | 4 | 8.0% | 0 | 0.0% |
Contraception | 1 | 2.0% | 0 | 0.0% |
Comfortable positions | 0 | 0.0% | 0 | 0.0% |
Venereal disease | 0 | 0.0% | 0 | 0.0% |
Pain | 1 | 2.0% | 0 | 0.0% |
Psychological feeling | ||||
Mood | 6 | 12.0% | 1 | 2.0% |
Self-worth | 2 | 4.0% | 1 | 2.0% |
Self-efficacy | 2 | 4.0% | 0 | 0.0% |
Motivation | 3 | 8.0% | 1 | 2.0% |
Anxiety | 2 | 4.0% | 0 | 0.0% |
Lose interest | 3 | 6.0% | 1 | 2.0% |
Symptoms related to the specific disease | ||||
Pains | 2 | 4.0% | 0 | 0.0% |
Fatigue | 10 | 20.0% | 4 | 8.0% |
Sleep quality | 2 | 4.0% | 1 | 2.0% |
Bladder weakness | 1 | 2.0% | 0 | 0.0% |
Digestive gases | 1 | 2.0% | 0 | 0.0% |
Smelly stool odour | 1 | 2.0% | 0 | 0.0% |
constipation/diarrhea | 4 | 8.0% | 1 | 2.0% |
Cough | 6 | 12.0% | 0 | 0.0% |
Sputum | 3 | 6.0% | 0 | 0.0% |
Mycosis | 1 | 2.0% | 1 | 2.0% |
Daily life organisation | ||||
Daily shopping/housework | 3 | 6.0% | 0 | 0.0% |
Rest time | 1 | 2.0% | 1 | 2.0% |
Planning of occupations/nursing | 1 | 2.0% | 0 | 0.0% |
Hygiene | 2 | 4.0% | 0 | 0.0% |
Self-sufficiency | 3 | 6.0% | 1 | 2.0% |
Eating times | 2 | 4.0% | 0 | 0.0% |
Leisure | ||||
Leisure activity | 5 | 10.0% | 1 | 2.0% |
Sports | 8 | 16.0% | 1 | 2.0% |
Costs | 2 | 4.0% | 0 | 0.0% |
Holidays | 3 | 6.0% | 0 | 0.0% |
Vacation abroad | 4 | 8.0% | 1 | 2.0% |
Treatments | ||||
Regularity | 4 | 8.0% | 2 | 4.0% |
Interruption | 1 | 2.0% | 0 | 0.0% |
Limitation | 1 | 2.0% | 0 | 0.0% |
Logistical supports/supply | 1 | 2.0% | 0 | 0.0% |
Efficacy | 1 | 2.0% | 1 | 2.0% |
Side effects | 4 | 8.0% | 1 | 2.0% |
Disease evolution/future | 8 | 16.0% | 2 | 4.0% |
Fertility treatment | 3 | 6.0% | 2 | 4.0% |
Transplantation | 3 | 6.0% | 1 | 2.0% |
Medical advances/research | 6 | 12.0% | 3 | 6.0% |
Project | ||||
Personal | 4 | 8.0% | 1 | 2.0% |
Professional | 5 | 10.0% | 1 | 2.0% |
Other | 1 | 2.0% | 0 | 0.0% |
None domains marked | 24 | 48.0% | ||
Domains considered to be unnecessary or repetitive | ||||
Sports | 1 | 2.0% | ||
Shopping/housework | 1 | 2.0% | ||
Usual treatments | 1 | 2.0% |
Factors | To have a child | Study/job | Fatigue | Sports | Disease evolution/future | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Not selected | Selected | P value | Not selected | Selected | P value | Not selected | Selected | P value | Not selected | Selected | P value | Not selected | Selected | P value | |
Number | 42 | 8 | 41 | 9 | 40 | 10 | 42 | 8 | 42 | 8 | |||||
Male | 32 | 3 | 0.029 | 32 | 3 | 0.008 | 32 | 3 | 0.002 | 31 | 4 | 0.178 | 30 | 5 | 0.614 |
Age (years) | 28.5 ± 8.6 | 22.1 ± 4.7 | 0.050 | 28.5 ± 8.7 | 22.6 ± 4.5 | 0.054 | 27.5 ± 8.4 | 28.0 ± 10.6 | 0.879 | 27.7 ± 7.8 | 26.0 ± 11.3 | 0.572 | 28.0 ± 8.4 | 25.5 ± 10.7 | 0.459 |
BMI (kg/m2) | 21.7 ± 3.2 | 21.6 ± 2.8 | 0.854 | 21.5 ± 2.9 | 22.6 ± 3.9 | 0.462 | 22.0 ± 3.5 | 21.2 ± 2.6 | 0.532 | 21.7 ± 2.8 | 21.7 ± 4.7 | 0.900 | 22.0 ± 3.3 | 20.7 ± 3.1 | 0.293 |
Student/working | 31 | 5 | 0.442 | 30 | 6 | 0.609 | 30 | 6 | 0.280 | 30 | 6 | 0.915 | 30 | 6 | 0.915 |
Pancreatic insufficiency | 33 | 7 | 0.563 | 32 | 8 | 0.462 | 31 | 9 | 0.377 | 32 | 8 | 0.123 | 33 | 7 | 0.563 |
Diabetes | 15 | 2 | 0.558 | 11 | 6 | 0.022 | 13 | 4 | 0.654 | 13 | 4 | 0.297 | 15 | 2 | 0.558 |
Depression | 6 | 2 | 0.449 | 6 | 2 | 0.574 | 7 | 1 | 0.563 | 8 | 0 | 0.178 | 8 | 0 | 0.178 |
SGRQ | |||||||||||||||
Total | 24.9 ± 17.1 | 30.2 ± 20.1 | 0.410 | 25.4 ± 18.4 | 27.7 ± 14.6 | 0.677 | 22.3 ± 16.4 | 37.2 ± 15.9 | 0.014 | 24.8 ± 17.4 | 30.8 ± 18.5 | 0.351 | 25.4 ± 16.8 | 26.0 ± 20.6 | 0.931 |
Impact | 18.2 ± 16.2 | 28.8 ± 12.3 | 0.128 | 20.5 ± 17.6 | 17.3 ± 7.7 | 0.643 | 17.0 ± 15.5 | 27.7 ± 14.7 | 0.065 | 19.1 ± 16.5 | 22.9 ± 14.7 | 0.529 | 18.3 ± 15.7 | 29.6 ± 14.1 | 0.138 |
Activity | 32.6 ± 20.0 | 41.5 ± 28.1 | 0.297 | 32.0 ± 20.8 | 41.5 ± 23.3 | 0.222 | 30.3 ± 19.3 | 45.2 ± 23.2 | 0.048 | 32.1 ± 20.8 | 43.7 ± 23.3 | 0.175 | 32.1 ± 21.2 | 44.0 ± 18.0 | 0.202 |
Symptoms | 45.6 ± 20.0 | 45.6 ± 26.1 | 0.934 | 45.7 ± 20.5 | 45.3 ± 24.3 | 0.980 | 43.0 ± 20.6 | 52.2 ± 19.9 | 0.218 | 45.4 ± 20.5 | 47.1 ± 24.8 | 0.786 | 46.9 ± 19.7 | 36.5 ± 24.1 | 0.199 |
Exacerbation in last year | 2.5 ± 1.4 | 2.0 ± 1.0 | 0.529 | 2.4 ± 1.4 | 2.0 ± 1.0 | 0.608 | 2.4 ± 1.5 | 1.9 ± 0.9 | 0.282 | 2.4 ± 1.4 | 2.4 ± 0.9 | 0.854 | 2.2 ± 1.5 | 2.6 ± 0.5 | 0.594 |
FEV1 (%) | 61 ± 31 | 77 ± 25 | 0.202 | 61 ± 30 | 75 ± 29 | 0.239 | 64 ± 30 | 63 ± 33 | 0.898 | 65 ± 31 | 58 ± 27 | 0.544 | 66 ± 30 | 57 ± 27 | 0.447 |
Colonization by PA | 17 | 3 | 0.835 | 18 | 2 | 0.209 | 15 | 5 | 0.508 | 17 | 3 | 0.835 | 16 | 4 | 0.563 |