A resource for advance care planning in multiple sclerosis

Not Applicable

Completed

• Conditions: Multiple sclerosis; People with severe progressive multiple sclerosis (pwPMS) across various health care settings in Italy; Nervous System Diseases

• Registration Number: ISRCTN48527663
• Lead Sponsor: Istituto Neurologico Carlo Besta

Brief Summary

2021 Protocol article in https://pubmed.ncbi.nlm.nih.gov/34389580/ protocol (added 16/08/2021)

Detailed Description

Not available

Study Timeline

• Study Start: 2021-03-30
• Study Completion: 2024-02-29
• Last Update Posted: 8 July 2024

Recruitment & Eligibility

• Status: Completed
• Sex: All
• Target Recruitment: 38

Inclusion Criteria

1. Aged =18 years
2. Diagnosed with primary or secondary progressive multiple sclerosis from =1 year before inclusion
3. Able to communicate in Italian
4. Gave written consent
5. Advance care plan (ACP) relevant as has =1 of the following conditions:
5.1. Expressed desire for ACP
5.2. Questions about own future
5.3. Thoughts about hastening death or medically assisted suicide
5.4. High risk for death within two years measured using the ‘Surprise Question’
5.5. High risk for development of severe cognitive compromise/dementia within two years
5.6. High risk for development of impairments preventing communication within two years
5.7. Significant suffering (such as uncontrolled physical symptoms, psychosocial issues, or existential issues)

Exclusion Criteria

1. Severe cognitive compromise, a score of <19 on the Mini-Mental State Examination (MMSE)
2. Impairments preventing communication
3. Psychosis or other serious psychiatric conditions
4. Advance care plan (ACP) document completed

Study & Design

• Study Type: Interventional
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Completion of (dated and signed) advance care plan (ACP) document during the six months of the study measured using between baseline and 6 months