Clinical trial NCT02814682: Elaboration of a Multi-dimensional Indicator of Quality in Palliative Care
Official title: Elaboration of a Multi-dimensional Indicator of Quality in Palliative Care
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Terminal Illness
End of Life
Keywords: palliative care
quality
indicator
multi-dimensional
Lead sponsor: Assistance Publique - Hôpitaux de Paris
Sponsor class: OTHER
First posted: 2016-06-28
Enrollment: 560
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Time perspective: RETROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Study population:

* Patients on palliative care phase,
* Family members or other people present beside patients,
* Caregivers (physicians, nurses) who care patients.

Brief summary: The purpose of this study is to elaborate a multi-dimensional indicator of the quality in palliative care for patients of end-of-life.

The study will, as secondary objectives:

* elaborate in a standard manner one set of indicators of organization and inner working of a palliative care setting.
* compare according to these indicators, the qualities of 3 types of palliative care: palliative care unit in hospitals, specified identified bed for palliative care patients and non-specified bed.
* explore the relationship between organizational aspects and results in term of burden.

Detailed description: A multicentric study aims on quality of palliative care and will be conducted in three types of 7 palliative care settings: two hospices, two hospital-based palliative care units and three medical units where a mobile palliative care team intervenes.

Eligibility criteria: Inclusion Criteria:

* Aged ≥ 18 years.
* Patient with serious progressive illness and in terminal phase (life expectancy \< 3 months): OMS stage is 3 or 4, regardless of etiology.
* Patient informed their diagnosis or not.
* Hospitalized at the moment of inclusion in one of the following care settings: palliative care unit, identified bed or non-identified bed in a care department of short stay.
* No-oppose to participate to the study, by patients, their families or trusted person.

Exclusion Criteria:

* Patient has difficulties in reading, writing or understanding french language, also their family.
* Hospitalization in the palliative care setting \< 48 hours.

Primary outcomes:
measure: Questionnaire for patients
timeFrame: From date of enrollment until the date of first documented leaving from hospital or date of death, whichever came first, up to 2 years
measure: Indicator for medical files
timeFrame: At enrollment
measure: Indicator for caregivers
timeFrame: From date of enrollment until the date of receiving questionnaire returned by caregiver, up to 2 years
measure: Questionnaire for families
timeFrame: From date of enrollment until the date of receiving questionnaire sent by family, up to 2 years
Secondary outcomes:
Other outcomes:
Locations:
city: Paris
country: France
facility: Maison Médicale Jeanne Garnier
state: Ile de France
Study officials:
affiliation: Maison Médicale Jeanne Garnier
name: Frédéric GUIRIMAND, MD
role: STUDY_CHAIR
affiliation: Hôpital Ambroise Paré, AP-HP
name: Philippe Aegerter, MD, PhD
role: STUDY_DIRECTOR
References:
citation: Guirimand F, Martel-Samb P, Guy-Coichard C, Picard S, Devalois B, Copel L, Abel A, Ghadi V; QUALI-PALLI group and Philippe Aegerter. Development and validation of a French questionnaire concerning patients' perspectives of the quality of palliative care: the QUALI-PALLI-Patient. BMC Palliat Care. 2019 Feb 11;18(1):19. doi: 10.1186/s12904-019-0403-z.