distress bij ALS of PSMA distress meaning of life Motor Neuron Disease
Conditions
Interventions
Meaning Centered Pyschotherapy (MCP) was originally developed by Breitbart and
colleagues as a group intervention and subsequently adapted to an
individualized format. The intervention focusses on h
Sponsors
Academisch Medisch Centrum
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: In order to be eligible to participate in this study, a subject must meet all of the following criteria: a) Having a diagnosis of ALS or PMA according to EL Escorial criteria b) Reporting to feel distressed (a score of 8 or higher on either the Anxiety or the Depression subscale on the Hospital Anxiety and Depression scale (HADS)). c) Being of the age of 18 years or older. d) Being able to communicate in Dutch. e) Having access to internet at home and being able to work with a computer (or laptop, tablet) f) Availabilty for the duration of the study
Exclusion criteria
Exclusion criteria: Patients cannot participate in the study in case of : a) An associated diagnosis of Fronto Temporal Dementia (FTD) b) Diagnosis of a current severe psychiatric disorder ,eg Psychosis or Schizofrenia for which psychiatric treatment is undergoing or indicated . c) Short life expectancy less than 8 months (as estimated by the physician based on the ALS prediction model ) d) Not being physically capable of using a device (computer, tablet).
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| To explore the efficacy of the intervention in MND patients a single case experimental design will be used with multiple measurements (pre- during -and post measurements) on the primary outcome: Distress with the Hospital Anxiety and Depression scale (HADS). | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcomes will be measured pre and post intervention and will include: Quality of life with the Mc Gill Quality of Life questionnaire part A and B, Personal Meaning measured by The Dutch Personal Meaning Profile (PMP), Post traumatic Growth measured by the Dutch Post Traumatic Personal Growth Inventory (PTGI), and well-being measured by the short form of the Ryffs* scale of psychological Well-being (SPWB). | — |
Countries
Netherlands
Outcome results
None listed