Survey of Lifestyle and Its Feelings in Families of Patients in Home Parenteral Nutrition (NCT05048030) | Clinical Trial Compass
CompletedNot Applicable
Survey of Lifestyle and Its Feelings in Families of Patients in Home Parenteral Nutrition
France104 participantsStarted 2021-09-01
Plain-language summary
Description of the life style of patients and families during the course of long term HPN.
1. Evaluation of the familial impact of HPN, and the way it is perceived
2. Evaluation of the satisfaction regarding the management by the multi-professional team (Medical, nursing, home care company and logistic, social, psychologist etc..) for improving the global management of these challenging patients
3. Analysis of the factors related to specific distress and the protective factors
Who can participate
Age range
18 Months – 23 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Patients followed up by the Necker HPN expert center
* HPN ≥ 12 months
* HPN between 2004 and 2020
* Parents reading and writing French language
Exclusion Criteria:
* Refusal of the parents to participate to the survey
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Demographic data and socio-familial life style with a child on long-term