Palliative Care Coaching for Families With Rare Advanced Lung Diseases

Completed · Not applicable

Conditions studied: Lung Diseases, Rare Non-Neoplastic Disorder

In brief

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.

Key facts

Study ID

NCT03813667

Run by

West Virginia University

People needed

35

Starts

2018-11-01

Expected to finish

2019-09-30

Last updated by the study team

2019-10-21

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

• Patients who have received or are on a waiting list for a lung transplant
• Patients diagnosed with another terminal illness.

Where it is running

• West Virginia University Hospital — Morgantown, West Virginia, United States

Full record on ClinicalTrials.gov

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