An observational study in Palliative Care, sponsored by University Hospital, Toulouse. Status unknown at 1 site in France. Open to participants aged 1 Year to 18 Years. Per ClinicalTrials.gov, last updated 2020-08-26.
Sponsored by University Hospital, Toulouse · Observational
Investigators will propose to each family monitored by the teams to participate in the study (children between 1 and 18 years old, families understanding and speaking a minimum of French).
Semi-directed interviews are organized with children/adolescents and their parents who have agreed to participate in the study. The interviews are conducted by the care teams themselves. Socio-demographic data are collected.
An information letter will be distributed to the children and parents and their non opposition to their participation will be sought (or assent for the child via a written document adapted to the age) will be systematically requested.
Several instruments will be used by the members of the paediatric teams during their routine home or hospital visits to children and their families: the CPOS (Downing 2018), the KINDL (generic questionnaire on quality of life validated for healthy children, Erhart et al. 2009), the QOLLTI-F v.2 (questionnaire on quality of life for parents, Cohen 2007, 2015).
The interviews will therefore be semi-directed interviews with children/adolescents and their parents who have agreed to participate in the study. The interviews will be conducted by the care teams themselves. In addition to the CPOS, KINDL and QOOLTI-F, socio-demographic data are collected.
University Hospital, Toulouse is the lead sponsor of 794 studies on the registry; 214 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Child/parent pair agrees to participate, they give their agreement orally and their non-opposition is documented in the patient's medical record.
Interviews are conducted at home and/or at the hospital depending on where the child is usually cared for by the usual care team.
Exclusion Criteria:
Children/adolescents from 1 to 18 years of age with a serious illness requiring follow-up by a regional pediatric palliative care resource team and/or temporarily hospitalized.
Other: Questionnaire
Adult person with parental authority over a child between the ages of 1 and 18 who is a carrier of a serious illness and requires follow-up by a regional pediatric palliative care resource team and/or is temporarily hospitalized.
Other: Questionnaire
semi-structured interviews on the quality of life
Quality of life measure
Exploring the quality of life of children/adolescents in palliative settings and that of their parents through the development of the Childrens palliative outcome scale.
Time frame: Day 1
psychometric measure - KINDL
using the validated questionnaire KINDL, French version
Time frame: Day 1
psychometric measure - QOLLTI-F
using the the validated questionnaire Quality of life in life threatening illness-family caregiver QOLLTI-F.
Time frame: Day 1
psychometric measure - Children's palliative outcome scale
Documentation of the psychometric properties of the Children's palliative outcome scale
Time frame: Day 1
Plan to share: No
No publications or documents are linked to this record.
This study is status unknown, as verified in Aug 2020. You cannot join it, but the record below documents what was studied.
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University Hospital, Toulouse