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 range18 Months – 23 Years

SexALL

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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

What they're measuring

Demographic data and socio-familial life style with a child on long-term

Timeframe: Base line

Data involving the management of HPN

Timeframe: Base line

Trial details

NCT IDNCT05048030

SponsorImagine Institute

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2022-10-01

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