Lung Diseases Clinical Trial
Official title:
Palliative Care Coaching for Family Caregivers & Patients With Rare Advanced Lung Disease
Verified date | October 2019 |
Source | West Virginia University |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Interventional |
With one of the highest incidences of lung disease deaths in the nation, there is great need for home end-of-life palliative care in the rural, disadvantaged communities of West Virginia. The aims of this proposed study are to: (1) pilot test the nursing care intervention with patients and family members managing home supportive EOLPC for rare advanced lung disease and (2) collect research data to report in the NIH resubmission and future trials.
Status | Completed |
Enrollment | 35 |
Est. completion date | September 30, 2019 |
Est. primary completion date | September 30, 2019 |
Accepts healthy volunteers | No |
Gender | All |
Age group | 18 Years and older |
Eligibility |
Inclusion Criteria: - Adult patients diagnosed with R-ALD, and their primary family caregivers dyad. - All participants must be alert and oriented. - Be able to read and write in English. Exclusion Criteria: - Patients who have received or are on a waiting list for a lung transplant - Patients diagnosed with another terminal illness. |
Country | Name | City | State |
---|---|---|---|
United States | West Virginia University Hospital | Morgantown | West Virginia |
Lead Sponsor | Collaborator |
---|---|
West Virginia University |
United States,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | patient outcomes | The intervention group R-ALD patients will report lower scores on breathlessness scale compared to control group patients at 3 months. Breathlessness is measured by Self-report shortness of breath scale (1 item, 0-10; 0-no shortness of breath, 10 = shortness of breath as bad as can be) (Gift, Narsavage, 1998 |
3 months | |
Secondary | family caregiver outcomes | The intervention group family caregivers will rate lower scores on Anxiety and Depression on PHQ-4 Scale compared to control group caregivers at 3 months. Anxiety and Depression are measured by PHQ-4 Scale, 4-item Likert scale. |
3 months | |
Secondary | patients' decision on EOLPC | The intervention group will report higher numbers of signed advance directives. This outcome is measured by the presence of signed advance directives in the medical record. Various types of advance directives will be identified. |
3 months | |
Secondary | Helpfulness of home R-ALD EOLPC intervention | Each patient and family member will rate the 11-item Likert Intervention on the Helpfulness scale at 3 months. Range 1-5, 1= strongly disagree/not helpful and 5 = strong agree/helpful. | 3 months |
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