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Completed

NCT Number: NCT04950231

Investigation on Home Care Needs of ALS Patients and Their Caregivers

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.

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Key information

Conditions

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

Sex eligibility

All sexes

Study type

Observational

Primary location

Peking Yniversity Third Hospital

Beijing, China

About this study

The research target

  • To investigate the home nursing knowledge needs of ALS patients;
  • Investigate the needs of ALS caregivers for home nursing knowledge;
  • 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

  • Scale: Self-designed questionnaire "Questionnaire on the Degree of Home Nursing Knowledge Needs of ALS Patients or Their Families";
  • Amyotrophic lateral sclerosis function rating scale (ALS FRS)

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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;

Treatment and study plan

The questionnaire survey

Other

Questionnaires were issued and collected by 6 competent nurses with strict training, data entry by 2 researchers, statistical analysis by 1 researcher, and quality control by the other 2 researchers throughout the process.

Primary outcomes

  1. Scale

    Time frame: 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 outcomes

  1. (ALS FRS)

    Time frame: 1 year after recruitment

    Amyotrophic Lateral Sclerosis Function Scale (ALS FRS)

Sponsors and collaborators

Lead sponsor

Peking University Third Hospital

Other

Registry information

Official study title

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

Important dates

Study start
2020
Primary completion
2021
Study completion
2021
First posted
Jul 6, 2021
Registry last updated
Jul 6, 2021

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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