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| ID | Type | Description | Link |
|---|---|---|---|
| 2019-A02315-52 | Other Identifier | ID-RCB |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Child | 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. |
| |
| Parents | 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. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Questionnaire | Other | semi-structured interviews on the quality of life |
|
| Measure | Description | Time Frame |
|---|---|---|
| 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. | Day 1 |
| Measure | Description | Time Frame |
|---|---|---|
| psychometric measure - KINDL | using the validated questionnaire KINDL, French version | Day 1 |
| psychometric measure - QOLLTI-F | using the the validated questionnaire Quality of life in life threatening illness-family caregiver QOLLTI-F. |
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Inclusion Criteria:
Exclusion Criteria:
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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.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Agnes SUC, MD | Contact | 5 34 55 86 61 | +33 | suc.a@chu-toulouse.fr |
| Name | Affiliation | Role |
|---|---|---|
| Agnes SUC, MD | University Hospital, Toulouse | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Agnès SUC | Recruiting | Toulouse | 31059 | France |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| Day 1 |
| psychometric measure - Children's palliative outcome scale | Documentation of the psychometric properties of the Children's palliative outcome scale | Day 1 |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |