potentiALS - A Multi-method Participatory Aproach to Identify Potentials in Improving Quality of Life Among Patients With Amyotrophic Lateral Sclerosis

Status: Recruiting
Location: See location...
Intervention Type: Behavioral
Study Type: Observational
SUMMARY

Amyotrophic lateral sclerosis (ALS) is a rapidly progressing and disabling disease with the majority of patients dying 3-5 years after symptom onset. Given the high symptom burden, many patients and its caregivers are highly distressed. However, few programs to improve mental health for this patient group exist, and the sparse research implies that programs effective in other medical conditions may not be feasible in ALS patients. Therefore, it is highly needed to involve ALS patients, caregivers and medical staff as contributors into the development of such programs to meet the needs they really have. The envisaged project has two aims: First, the investigators want to examine whether and how it is possible to involve ALS patients in the whole research process despite rapid disease progress and severe functional impairments. Second, the investigators are interested in how contributors (i.e., patients, caregivers and medical staff) would compile a concrete psychotherapeutic program, i.e., how they set priorities in terms of format, content and treatment techniques of such a program. The investigators will closely collaborate with contributors across the whole project in designing the research process, planning assessment as well as interpreting and disseminating the findings. At the end of the study, the investigators will gather contributor feedback on their experience with the participatory approach. Results will provide important information on how ALS patients can be effectively involved in psychosocial intervention research. Identified priorites regarding psychotherapeutic programs will serve as concrete starting points to develop and test a disease-specific program within a subsequent study.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:

• patients met criteria for definite/laboratory-supported probable/clinically probable/possible familial or sporadic ALS (diagnostically synonymous with MND) or MND variants (progressive muscular atrophy or primary lateral sclerosis according to the revised El Escorial criteria

• ≥ 18 years old

• fluent in German

• ability to communicate thoughts and feelings

• ability to provide written consent

• anticipated remaining lifespan of ≥ 9 months.

Locations
Other Locations
Germany
University Medical Center Leipzig
RECRUITING
Leipzig
Contact Information
Primary
Moritz Metelmann, PhD
moritz.metelmann@medizin.uni-leipzig.de
+49 341 97 24209
Backup
Svenja Heyne, MSc. Psych
svenja.heyne@medizin.uni-leipzig.de
+49 341 97 15438
Time Frame
Start Date: 2024-01-01
Estimated Completion Date: 2024-12-31
Participants
Target number of participants: 54
Sponsors
Leads: University of Leipzig
Collaborators: Leipzig University Medical Center

This content was sourced from clinicaltrials.gov