An observational study in Parkinson Disease, sponsored by Centre Hospitalier Régional d'Orléans. Recruiting at 1 site in France. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-03-23.
Sponsored by Centre Hospitalier Régional d'Orléans · Observational
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.
4,573 studies on the registry are indexed under Parkinson Disease; 1,086 are open to participants now.
This study's planned enrollment of 80 is below the median of 96 across 1,085 observational studies indexed under Parkinson Disease.
Browse Parkinson Disease studies →Centre Hospitalier Régional d'Orléans is the lead sponsor of 132 studies on the registry; 32 are open to participants now.
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Parkinsonian patients treated in HH.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Parkinsonian patients in HH will receive an apomorphine pump as part of their routine care. Questionnaires will be completed at D0, D2, D4, D6, D12, D18, D24, D30 and D45. The questionnaires used will be * UPDSR III: rigidity * Algoplus * Richmond Scale (RASS) * Likert scale Entourage before/after * Likert scale Caregivers before/after * Zarit scale
Other: Questionnaires
Parkinsonian patients in HH will receive an apomorphine pump as part of their routine care. Questionnaires will be completed at D0, D2, D4, D6, D12, D18, D24, D30 and D45. The questionnaires used will be * UPDSR III: stiffness * Algoplus * Richmond Scale (RASS) * Likert scale Entourage before/after * Likert scale Caregivers before/after * Zarit scale
Rigidity
measured by the specific sub-section of rigidity of the internationally recognized UPDRS 3 scale validated in French. This criterion will be assessed before the apomorphine pump is installed and 6 days afterwards. The 5 items are scored from 0 to 4, so the total score ranges from 0 to 20.
Time frame: Day 0
Rigidity
measured by the specific sub-section of rigidity of the internationally recognized UPDRS 3 scale validated in French. This criterion will be assessed before the apomorphine pump is installed and 6 days afterwards. The 5 items are scored from 0 to 4, so the total score ranges from 0 to 20.
Time frame: Day 6
Change in analgesic consumption
Change in analgesic consumption will be recorded at Day 0, 2, 4, 6, 12, 18, 24, 30 and Day 45 and will be evaluated at the end of the study
Time frame: Day 45
Change in alertness and agitation levels
It will be will be evaluated by the Richmond Scale, from + 4 to -4 with +4 for very combative patient and -4 for unresponsive patient.
Time frame: Day 45
Change in communication with the care team and relatives
It will be evaluated with the Lickert scale for care team that assesses the patient's communication ability from -3 to +3 with -3 for greatly aggravated and +3 for greatly improved
Time frame: Day 45
Change in nursing care
It will be evaluated with the Lickert scale for caregivers that assesses the level of quality of nursing care. from -3 to +3 with -3 for greatly aggravated and +3 for greatly improved
Time frame: Day 45
Change in caregiver burden
It will be evaluated with Zarit scale . The total score is the sum of the scores obtained for each of the 22 items, ranging from 0 to 88. A score of 20 or less indicates a low or no burden; a score between 21 and 40 indicates a mild burden; a score between 41 and 60 indicates a moderate burden; a score above 60 indicates a severe burden.
Time frame: Day 0, 2, 6, 18, 30 and Day 45
Proportion of nausea/vomiting
Time frame: Day 0, 2, 4, 6, 12, 18, 24, 30 and Day 45
Proportion of hypotension
Time frame: Day 0, 2, 4, 6, 12, 18, 24, 30 and Day 45
Proportion of skin condition related to apomorphine
Time frame: Day 0, 2, 4, 6, 12, 18, 24, 30 and Day 45
Proportion of hallucinations
Time frame: Day 0, 2, 4, 6, 12, 18, 24, 30 and Day 45
Started Feb 2026 (actual). Primary completion is estimated for Feb 2027, 12 months after the start.
Of 378 non-industry observational studies under Parkinson Disease, half reached primary completion within 48 months of starting (the median), counting those still running; a quarter within 22 and three quarters within 133. This study's planned 12 months is below that.
Counting every sponsor, half of 438 studies reached it within 47 months; a quarter within 22 and three quarters within 114.
How these figures are worked out, and which studies are left out of them.
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