The iLIVE project: Live well, die well. A research programme to support living until the end

Completed

Conditions: patienten met een levensverwachting van 6 maanden of minder, ongeacht de aandoening
care in the last phase of life
Palliative care

Registration Number: NL-OMON54372

Lead Sponsor: Erasmus MC, Universitair Medisch Centrum Rotterdam

Brief Summary: Not available

Detailed Description: Not available

Recruitment & Eligibility

Status: Completed

Sex: Not specified

Target Recruitment: 200

Inclusion Criteria

Patient
1. Patient is 18 years or older.
2. The patient is aware that recovering from his/her disease is unlikely, to be
assessed by the attending physician.
3. The attending physician would not be surprised if the patient were to die
within 6 months.
4. If the physician is uncertain about the surprise question, the patient is
eligible if presenting with at least one SPICT indicator

Relative
Relatives of participating patients are eligible to participate in the study if
they are 18 years or older and provide informed consent to participate, and if
the patient agrees. Relatives can be a family member, friend or other close
relative. They have to be aware that the patient is unlikely to recover from
his/her disease.

Exclusion Criteria

Patient
1.The patient is incapable of filling in a questionnaire in the country*s main
language or in English (patients may be supported by relatives when filling in
the questionnaire).
2. The patient is incapable of providing informed consent to participate in the
study, as assessed by the attending physician.

Relative
Relatives are not eligible if they are incapable of filling in a questionnaire
in the country*s main language or in English.

Study & Design

Study Type: Observational non invasive

Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
<p>Primaire outcome: frequencies of concerns, expectations and preferences of<br /><br>patients in the last phase of life after inclusion and after one month</p><br>

Secondary Outcome Measures

Name	Time	Method
<p>Secondary endpoints are:<br /><br>- Symptoms (ESAS, at baseline and after one month);<br /><br>- Health-related quality of life (EORTC QLQ-C15-PAL quality of life item and<br /><br>EQ-5D-5L, at baseline and after one month);<br /><br>- ICECAP-SCM scores;<br /><br>- Use of medical interventions and medicines and costs of medical care in the<br /><br>last week of life (medical file data);<br /><br>- Bereaved relatives* experiences and their appreciation of care and support in<br /><br>the last days of life of the decedent, and bereavement levels (bereavement<br /><br>questionnaire);<br /><br>- Patient survival.</p><br>