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Investigation on Home Care Needs of ALS Patients and Their Caregivers

Sponsor
Peking University Third Hospital (Other)
Overall Status
Completed
CT.gov ID
NCT04950231
Collaborator
(none)
20
Enrollment
1
Location
8
Actual Duration (Months)
2.5
Patients Per Site Per Month

Study Details

Study Description

Brief 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.

Condition or Disease Intervention/Treatment Phase
  • Other: The questionnaire survey

Detailed Description

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 Design

Study Type:
Observational
Actual Enrollment :
20 participants
Observational Model:
Case-Only
Time Perspective:
Prospective
Official Title:
Investigation on the Knowledge Needs of ALS Patients and Their Caregivers at Home
Actual Study Start Date :
Sep 1, 2020
Actual Primary Completion Date :
Feb 1, 2021
Actual Study Completion Date :
May 1, 2021

Outcome Measures

Primary Outcome Measures

  1. Scale [1 year after recruitment]

    Scale: Self-designed questionnaire Questionnaire on the Degree of Home Nursing Knowledge Needs of ALS Patients or Their Family Members;

Secondary Outcome Measures

  1. (ALS FRS) [1 year after recruitment]

    Amyotrophic Lateral Sclerosis Function Scale (ALS FRS)

Eligibility Criteria

Criteria

Ages Eligible for Study:
N/A and Older
Sexes Eligible for Study:
All
Accepts Healthy Volunteers:
No
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;

Contacts and Locations

Locations

Site City State Country Postal Code
1 Peking Yniversity Third Hospital Beijing China

Sponsors and Collaborators

  • Peking University Third Hospital

Investigators

None specified.

Study Documents (Full-Text)

None provided.

More Information

Publications

None provided.
Responsible Party:
Peking University Third Hospital
ClinicalTrials.gov Identifier:
NCT04950231
Other Study ID Numbers:
  • M2020082
First Posted:
Jul 6, 2021
Last Update Posted:
Jul 6, 2021
Last Verified:
Jun 1, 2021
Individual Participant Data (IPD) Sharing Statement:
No
Plan to Share IPD:
No
Studies a U.S. FDA-regulated Drug Product:
No
Studies a U.S. FDA-regulated Device Product:
No
Additional relevant MeSH terms:
Motor Neuron Disease
Amyotrophic Lateral Sclerosis

Study Results

No Results Posted as of Jul 6, 2021