Investigation on the Knowledge Needs of ALS Patients and Their Caregivers at Home

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Study Purpose:

Study Status:

Not recruiting

Disease:

Amyotrophic Lateral Sclerosis

Study Type:

Observational

Type of Intervention:

N/A

Intervention Name:

N/A

Placebo:

N/A

Phase:

N/A

Study Chair(s)/Principal Investigator(s):

N/A

Clinicaltrials.gov ID:

NCT04950231

Neals Affiliated?

Coordinating Center Contact Information

Full Study Summary:

The research target

1. To investigate the home nursing knowledge needs of ALS patients;

2. Investigate the needs of ALS caregivers for home nursing knowledge;

3. To compare the differences between patients and caregivers in the knowledge needs of patients' refusal to care, so as to provide patients and caregivers with targeted care, meet the needs of patients, improve the quality of life of patients, and extend the survival period.

Assessment indicators

1. Scale: Self-designed questionnaire "Questionnaire on the Degree of Home Nursing Knowledge Needs of ALS Patients or Their Families";

2. Amyotrophic lateral sclerosis function rating scale (ALS FRS)

Study Sponsor:

Peking University Third Hospital

Estimated Enrollment:

Estimated Study Start Date:

09 / 01 / 2020

Estimated Study Completion Date:

05 / 01 / 2021

Posting Last Modified Date:

07 / 06 / 2021

Date Study Added to neals.org:

07 / 06 / 2021

Minimum Age:

N/A

Maximum Age:

N/A

Inclusion Criteria:

- confirmed and suspected patients of ALS diagnostic criteria revised by E1 Escorial in 1998;Conscious and stable vital signs;Signing the informed consent;

Exclusion Criteria:

- patients with severe medical diseases, such as severe cardiovascular and cerebrovascular diseases, liver and kidney failure, etc.The existing resources cannot complete the questionnaire to fill in the exclusion of patients, but the caregivers can fill in the questionnaire;

Peking Yniversity Third Hospital

Beijing
China