About this trial
Care for Parkinson's patients at the end of life is far from optimal, particularly due to specificities linked to the disease itself, often unknown to non-specialists.
A study carried out at the CHU Rennes on data covering the period 2006-2018 showed that only 132 patients died in this hospital, two-thirds of whom came from home. In 42% of cases, antiparkinsonian treatment was stopped before death without specialist advice (palliative or neurological), with the corollary of the appearance of a dopaminergic withdrawal syndrome (or pseudo-neuroleptic malignant syndrome) in a high proportion of these patients. Neuroleptic pseudo-malignant syndrome is a major cause of discomfort. If left untreated, it can precipitate death in particularly distressing conditions for the patient, his or her family and caregivers.
The Rennes study also suggests that Parkinson's patients rarely die in hospital. In fact, work carried out by FNEHAD on data for 2022 showed that 1,800 Parkinson's patients were cared for in HAH in France during that same year, mainly for palliative care or heavy nursing reasons. Half of these patients died.
End-of-life management of Parkinson's disease therefore requires local clinical and pharmacological expertise. A recent observational study suggests that the use of a subcutaneous apomorphine pump brings substantial benefits in terms of clinical comfort, both motor and non-motor, as well as relief for family and friends, easier nursing care for the nursing team, and in some cases, renewed communication.
Such care can be provided in the home, and must necessarily be multidisciplinary, combining palliative expertise, provided by Home Hospitalization (HH) teams, with technical and Parkinson's expertise, provided by Home Healthcare Providers (HHPs) experienced in managing the apomorphine pump, in liaison with the referral team.
Eligibility criteria
Qualifiers
Person (or trusted person/relative if patient is unable) who has agreed to participate in the study
Patient of legal age
Advanced Parkinson's disease with apomorphine pump indication
Use of HH for palliative reasons
Disqualifiers
Apomorphine pump already in use
Opposition to the introduction of an apomorphine pump
Protected person (under guardianship or curatorship)
Person under court protection
Trial design
Treatments tested in this trial
- Questionnaires
Treatment groups
Sponsors and collaborators
Centre Hospitalier Régional d'Orléans
Lead sponsor
Fédération Francaise d'Hospitalisation à Domicile (FNEHAD)
Collaborator
France Développement Electronique (FDE)
Collaborator