Supportive Care
Conditions
Brief summary
To test the effects of home-based care on healthcare utilization within one Year (Hospitalization Status, Number of Hospitalizations, Unplanned Hospitalization Status, Number of Unplanned Hospitalizations, Length of Hospital Stay, Number of Emergency Room Visits, Number of Outpatient Visits) among progressive neurologic disease patients with decreased performance status. Home-based care includes education for patients and their family caregivers, home visits by specialized home-based medical staff, and regular status check-ups.
Detailed description
This study is a Single-center, single-arm, investigator-initiated exploratory clinical trial to test the effects of home-based care on Healthcare Utilization within One Year (Hospitalization Status, Number of Hospitalizations, Unplanned Hospitalization Status, Number of Unplanned Hospitalizations, Length of Hospital Stay, Number of Emergency Room Visits, Number of Outpatient Visits)among neurologic disease Patients with decreased performance status. Home-based care includes education for patients and their family caregivers, home visits by specialized home-based medical staff, and regular status check-up. Study participants are recruiting from single institutions, aiming for 30 progressive neurologic disease patients.
Interventions
OTHERSupporTive Care At Home
Home-based medical care is based on a specialized home-based medical team approach, including following: Specialized Home-Based Medical Team Approach Initial Assessment and Education Initial Home Visits and Education Multidisciplinary Team Meeting Regular Assessment After the Initial Visit
Sponsors
BeLong Cho
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
19 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Both the patient and their family caregiver must meet the criteria to be considered for this research. Patient Diagnosis of Progressive Neurological Disorders (Motor Neuron Disease, Parkinson's Disease) with ICD-10 codes (G12.2, G20, G11.9, G21, G22, G23, G30.8, G31.8, F02.3, etc.), additional diseases can be included depending on the patient's condition. Individuals with a modified Rankin Score (mRS) of 3-5 A person who wishes to stay at home A person whose family caregiver resides at home A person who wishes to participate in the research Family Caregiver A family\* member of the patient \* Family: refers to the patient's spouse (including a common-law partner), descendants and their spouses up to the second degree, siblings and their spouses, and relatives and their spouses up to the eighth degree. A person who meets one of the following conditions: Lives with the patient (patient's household member) Does not live with the patient, but visits the patient's home more than three times a week A person who wants the patient to stay at home A person who can communicate easily with medical staff A person who wishes to participate in the research
Exclusion criteria
* If either the patient or the family caregiver meets any one of these criteria, they are excluded from the study. Patient A person who cannot speak, hear, or read Korean A person who is judged by a medical doctor to be unable to take part in this research due to extremely poor health A person residing outside the range that can be visited by the respective medical institution (the conditions for distance are to be specified by each medical institution)\* \* This condition is not applicable for the control group. A person who has used hospital- or home-type hospice and palliative care services A person who is under the age of 19 Family Caregiver A person who cannot speak, hear, or read Korean A person who is judged by a medical doctor to be unable to take part in this research due to extremely poor health A person under the age of 19
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Unplanned hospitalization | within One Year | admission to the enrolled hospital to treat unexpected symptoms or medical conditions (not including planned admission for chemotherapy or admission for planned surgery or intervention) admission to a hospital other than the enrolled hospital admission to a nursing hospital for a duration of less than 4 weeks. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Hospitalization | within 12 months following enrollment | the number of hospitalization |
| ER visits | within 12 months following enrollment | the number of emergency room visits |
| Healthcare use | within 12 months following enrollment | the number of healthcare use for severe diseases |
| Patient end-of-life care: ICU admission | within 1 month before death | ICU admission one month before death |
| Patient end-of-life care: ventilator treatment | within 1 month before death | Mechanical ventilator apply one month before death |
| Patient end-of-life care: an advance directive | within 1 month before death | Completion of advance medical directives within 1 month before death |
| symptom management | within 12 months following enrollment | IPOS-neuro S8 of patient |
| Patient medical utilization | within 12 months following enrollment | The total number of hospital utilization, including hospitalization, emergency room visit, and clinic visits |
| Satisfaction with services (patient) | within 12 months following enrollment | Satisfaction of the study participant (patient) with the service in this study, evaluated by questionnaire |
| Quality of life of family caregiver | within 12 months following enrollment | Euro-Quality of Life-5 Dimension (EQ-5D) of family caregiver |
| Care burden of family caregiver | within 12 months following enrollment | The Korean version of Caregiver Reaction Assessment (CRA-K) of family caregiver |
| Depressive symptom of family caregiver | within 12 months following enrollment | Patient Health Questionnaire-9 (PHQ-9) of family caregiver |
| Caring competency of family caregiver | within 12 months following enrollment | Caring competency of family caregiver, measured by questionnaire |
| Satisfaction with services (family caregiver) | within 12 months following enrollment | Satisfaction of the study participant (family caregiver) with the service in this study, evaluated by questionnaire |
| Expenses | within 12 months following enrollment | medical expenses, care expenses |
| Quality of life of patient - EQ-5D | within 12 months following enrollment | Euro-Quality of Life-5 Dimension (EQ-5D) of patient |
Countries
South Korea
Contacts
Primary ContactAhhyun Lee
Outcome results
None listed