Questionnaires for people with Parkinson's disease nearing end of life
Observes people with Parkinson's disease who are near the end of life.
Key facts
- Who runs it
- Centre Hospitalier Régional d'Orléans
- Where
- Crest, FranceSee the site
- Trial code
- Registry title
- Interest of Continuous Subcutaneous Apomorphine in Parkinsonian Patients at the End of Life
- Status
- Recruiting
- People taking part
- 80 people, planned
- Started
- 2 Feb 2026
- Expected to end
- Feb 2027
- Type of study
- Observational
- Treatments tested
- Questionnaires
- Record updated
- 23 March 2026
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for adults with advanced Parkinson's disease who get palliative care at home, can no longer take pills by mouth, and may need an apomorphine pump.
- Age
- 18 years or older
- Sex
- All sexes can join.
- Disease stage
- Advanced Parkinson's disease with an indication for an apomorphine pump. Hoehn & Yahr score of 5 when OFF (symptoms on both sides and in the trunk without levodopa).
- Earlier treatment
- Must have stopped oral treatments because of loss of ability to swallow or take them by mouth. Must not already be using an apomorphine pump.
Main reasons for not taking part
- Already using an apomorphine pump
- Opposing the start of an apomorphine pump
- Under guardianship, curatorship or court protection
- Deprived of liberty
- Not covered by a social security scheme
The registry criteria, word for word
Show all 13 criteriaShow less
Who can take part
- 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
- Loss of orality (discontinuation of oral treatments)
- Hoehn \&Yahr score in OFF = 5 (bilateral and axial symptoms in the absence of levodopa)
Who cannot take part
- Apomorphine pump already in use
- Opposition to the introduction of an apomorphine pump
- Protected person (under guardianship or curatorship)
- Person under court protection
- Persons deprived of liberty
- Persons not affiliated to a social security scheme
- Pregnant or breast-feeding woman
Where in France
- Had CrestCrest, FranceContact: GIRARD TAOS, DrTaking people
About the trial
What the trial wants to find out
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.
Read full original descriptionShow less
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.
The group in the trial
- Parkinson patients
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
Treatment: Questionnaires
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- Interest of Continuous Subcutaneous Apomorphine in Parkinsonian Patients at the End of Life
- Plain-language title
- Questionnaires for people with Parkinson's disease nearing end of lifeGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Record updated
- 23 March 2026