Home Care Needs and Current Nursing Status of Patients With Amyotrophic Lateral Sclerosis

NCT04953481 | Unknown

• 1 other identifier: M2021023
• Study Type: observational
• Target: 252
• Locations: 1 country
• Sites: 1

Brief Summary

The purpose of this study is to comprehensively investigate and analyze the home care needs and status quo of ALS patients in China, and to clarify their home care needs and status quo, so as to provide reference for the development of home care service planning and policy measures for ALS patients.

Conditions

Amyotrophic Lateral Sclerosis

Outcome Measures

Primary Outcomes (1)

• the Barthel index of ADL

  the Barthel index of ADL

  At the time of survey (day 0)

Secondary Outcomes (1)

• Caregiver Burden Inventory, CBI

  At the time of survey (day 0)

Study Arms (2)

Amyotrophic lateral sclerosis group

Patients with amyotrophic lateral sclerosis undergoing home care.

Other: survey

Caregiver group

Caregivers

Interventions

survey OTHER

The general information, home care status and functional status of ALS patients and family caregivers were collected.

Amyotrophic lateral sclerosis group

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Probability Sample

Study Population

The outpatients, inpatients, discharged patients and their caregivers of ALS in a general hospital in Beijing.

You may qualify if:

• They met the diagnostic criteria of Chinese guidelines for the diagnosis and treatment of amyotrophic lateral sclerosis; ② Receiving care at home; ③ No cognitive impairment (if the patient is unable to talk and write due to illness, the family members can express it for the patient);
• ④ Informed consent, willing to participate in this study;
• ⑤ No mental illness.
• They are relatives of patients;
• No payment for care; ④ Informed consent, willing to participate in this study;
• No mental illness; ⑥ There was no cognitive impairment.

You may not qualify if:

• ① severe physical diseases, such as malignant tumor, liver and kidney dysfunction, etc;
• ② They are participating in other intervention projects.
• severe physical diseases, such as malignant tumor, liver and kidney dysfunction, etc; ② They are participating in other intervention projects.

Sponsors & Collaborators

• Peking University Third Hospital: lead

Study Sites (1)

Peking University Third Hospital

Beijing, China

RECRUITING

MeSH Terms

Conditions

Amyotrophic Lateral Sclerosis

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Spinal Cord Diseases; Central Nervous System Diseases; Nervous System Diseases; Motor Neuron Disease; Neurodegenerative Diseases; TDP-43 Proteinopathies; Neuromuscular Diseases; Proteostasis Deficiencies; Metabolic Diseases; Nutritional and Metabolic Diseases

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Design

• Study Type: observational
• Observational Model: ECOLOGIC OR COMMUNITY
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 27, 2021
• First Posted: July 8, 2021
• Study Start: January 1, 2021
• Primary Completion: December 31, 2021
• Study Completion: December 31, 2022
• Last Updated: July 8, 2021

Record last verified: 2021-07

Data Sharing

• IPD Sharing: Will not share

Locations

CN (1)