Personal Hope and the Family Milieu: Impact on Medical Decision-Making and Quality of Life

University of Kentucky

Hypothesis:
Depression or hopelessness on the part of the patient may factor a negative decision with regard to decisions of NIV and PEG.

Aims:

• Determine the natural history of the emotional state in ALS
• Evaluate the emotional stare of the spouse during the course of ALS
• Examine the family milieu and how it might change during stresses imposed by ALS
• Identity which factors are important in shaping decisions to accept or reject PEG and NIV

Status:
Fifty-two patients and 46 spouses have enrolled in the study. Investigators have begun interim data analysis with regard to depression and are following a sub set of patients on continuous mechanical ventilation. The study is progressing on schedule.