Ignite Creation Date:
2024-05-06 @ 4:38 PM
Last Modification Date:
2024-10-26 @ 2:13 PM
Study NCT ID:
NCT05048030
Status:
UNKNOWN
Last Update Posted:
2021-09-17
First Post:
2021-09-01
Brief Title:
Survey of Lifestyle and Its Feelings in Families of Patients in Home Parenteral Nutrition
Sponsor:
Imagine Institute
Organization:
Imagine Institute
Study Overview
Official Title:
Survey of Lifestyle and Its Feelings in Families of Patients in Home Parenteral Nutrition
Status:
UNKNOWN
Status Verified Date:
2021-09
Last Known Status:
RECRUITING
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
NPAD
Brief 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
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
Detailed Description:
Gastrointestinal diseases may cause intestinal failure IF requiring long term parenteral nutrition PN which is most of the time performed at home HPN
However such conditions represent a great burden for the parents and the family
The birth of a child with such disease changes the life of the entire family including life style leisures social relationships and professional activities
These condition obligate to change the personal and familial organization according to the course of the disease The PN treatment which was seen as life saving when first started might become a burden altogether physically and psychologically for the child and hisher family
The Necker-Enfants Malades hospital developed home PN in the early eighties as an alternative to very long hospitalizations
Nowadays there are 7 expert centers for HPN in France The Necker HPN program is the oldest and the largest looking after i a third of the 400 children on HPN in France
Our organization is based on a specializednursing team together with medical doctors specialized in pediatric clinical nutrition
The nursing team is also a teaching team for training the parents for daily PN care The HPN team works in collaboration with professional partners pharmacists dieticians psychologists occupational therapistsand speech specialists as well as with social workers
Results of our clinical activities have been published in international peer review journals However those publications reported only clinical data in terms of diagnosis prognosis mortality morbidity and growthThere was any data on family quality of life QOL and on life style changes LSC In other words by reporting only on medical aspects there was any analyze on familial psychosocial and professional impact of long term HPN
However such conditions represent a great burden for the parents and the family
The birth of a child with such disease changes the life of the entire family including life style leisures social relationships and professional activities
These condition obligate to change the personal and familial organization according to the course of the disease The PN treatment which was seen as life saving when first started might become a burden altogether physically and psychologically for the child and hisher family
The Necker-Enfants Malades hospital developed home PN in the early eighties as an alternative to very long hospitalizations
Nowadays there are 7 expert centers for HPN in France The Necker HPN program is the oldest and the largest looking after i a third of the 400 children on HPN in France
Our organization is based on a specializednursing team together with medical doctors specialized in pediatric clinical nutrition
The nursing team is also a teaching team for training the parents for daily PN care The HPN team works in collaboration with professional partners pharmacists dieticians psychologists occupational therapistsand speech specialists as well as with social workers
Results of our clinical activities have been published in international peer review journals However those publications reported only clinical data in terms of diagnosis prognosis mortality morbidity and growthThere was any data on family quality of life QOL and on life style changes LSC In other words by reporting only on medical aspects there was any analyze on familial psychosocial and professional impact of long term HPN
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None