Quality of Life of Children/Adolescents in Palliative Care Settings

NCT04527692 | Unknown

• 2 other identifiers: RC31/19/03472019-A02315-52
• Study Type: observational
• Target: 320
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Palliative Care

Keywords

child; parents; quality of life

Outcome Measures

Primary Outcomes (1)

• 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

Secondary Outcomes (3)

• psychometric measure - KINDL

  Day 1

• psychometric measure - QOLLTI-F

  Day 1

• psychometric measure - Children's palliative outcome scale

  Day 1

Study Arms (2)

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.

Other: Questionnaire

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.

Other: Questionnaire

Interventions

Questionnaire OTHER

semi-structured interviews on the quality of life

Child; Parents

Eligibility Criteria

• Age: 1 Year - 18 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Probability Sample

Study Population

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.

You may qualify if:

• Children/adolescents aged 1 to 18 years with a serious illness and requiring follow-up by a regional pediatric palliative care resource team and/or temporarily hospitalized.
• Having given his non-opposition to his participation.
• A minor of whom at least one of the two holders of parental authority has given his or her consent to the participation of their child.
• Child of whom one of the two holders of parental authority has himself agreed to participate in the study.

You may not qualify if:

• Children/adolescents at the end of life (imminent death foreseeable).
• Children/adolescents and their parents who do not understand French.
• Child or parent under legal protection (guardianship, curatorship).

Sponsors & Collaborators

• University Hospital, Toulouse: lead

Study Sites (1)

Agnès SUC

Toulouse, 31059, France

RECRUITING

MeSH Terms

Interventions

Surveys and Questionnaires

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Agnes SUC, MD

  University Hospital, Toulouse

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Agnes SUC, MD

CONTACT

5 34 55 86 61; suc.a@chu-toulouse.fr

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 29, 2020
• First Posted: August 26, 2020
• Study Start: April 15, 2020
• Primary Completion: December 15, 2020
• Study Completion: November 15, 2022
• Last Updated: August 26, 2020

Record last verified: 2020-08

Data Sharing

• IPD Sharing: Will not share

Locations

FR (1)