To investigate the opinion of physicians about euthanasia and/or pysician assisted suicide in HD patients, in The Netherlands and surrounding European countries.To investigate the opinion of patients about euthanasia and/or pysician assisted suicide…
ID
Source
Brief title
Condition
- Movement disorders (incl parkinsonism)
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Evaluation of thoughts about and use of euthanasia or physician assisted
suicide in The Netherlands and surrounding European countries with physicians.
Evaluation of thoughts about and use of euthanasia or physician assisted
suicide in The Netherlands and surrounding European countries with patients
Secondary outcome
When investigating this subject, we must consider the law. Are there any legal
rules on the subject to which a physician must comply? Can we see a change in
attitude among politicians and changes in the law regarding the subject of
euthanasia?
Background summary
Over the last few years the number of requests for euthanasia in patients with
Huntington's Disease (HD) is increasing. With a changing attitude from society
and families towards euthanasie this has become an actual issue for patients
and their physicians. Extensive research has been done on the subject of
euthanasia in patients with for example ALS but not in patients with HD.
Study objective
To investigate the opinion of physicians about euthanasia and/or pysician
assisted suicide in HD patients, in The Netherlands and surrounding European
countries.
To investigate the opinion of patients about euthanasia and/or pysician
assisted suicide in HD patients, in The Netherlands and surrounding European
countries.
Study design
1. semi-structured interviews with physicians (approx 15)
2. semi-structured interviews with patients (approx 15)
3. questionnaire sent to physicians (approx 200)
4. questionnaire sent to patients. (approx 300)
Study burden and risks
The burden consists of an interview and a questionnaire
Risks are possible emotional burden and emotional distress caused by the type
of questions asked.
Albinusdreef 2
2333 ZA Leiden
NL
Albinusdreef 2
2333 ZA Leiden
NL
Listed location countries
Age
Inclusion criteria
Known gene carrier of Huntington's disease (HD), pre-manifest or manifest.
Over the age of 18.
Partner of family member of a gene carrier available
Patients have to be able to communicate, written or oral
Exclusion criteria
Decline informed consent
Gene carriers suffering from severe depression.
Patients or gene carriers who are suicidal
Patients who have an addiction to alcohol or drugs, which changes their judgement
Design
Recruitment
metc-ldd@lumc.nl
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL35588.058.11 |