Coping Effectiveness Training for ALS

ALS is a rare, devastating, fatal neurodegenerative disease of largely unknown cause.
Average survival after diagnosis is about 3 years. The diagnostic process is often
protracted, but even though the possibility of ALS may have been mentioned earlier, when the
diagnosis is confirmed, patients and family members are often shocked and overwhelmed.

After the diagnostic visit, patients (and accompanying family member) are commonly scheduled
to return to the clinic or office in 3 to 6 months. At this first routine clinic visit, the
focus is generally on assessment and management of mobility issues, diet, occupational
adjustments, advance planning directives, insurance coverage and other pressing issues that
usually take up the allotted time. Thus, there is often little opportunity to address the
emotional impact of the diagnosis at that visit.

Our goal is a manualized intervention suitable for telephone or Skype delivery, for the
management of distress and enhancement of coping skills among recently diagnosed ALS
patients and/or their family care partner. We are adapting the intervention developed by
Chesney, Folkman and colleagues, "Coping Effectiveness Training," as being the most salient
and theoretically powerful design for our purpose. We base our work on Folkman's revised
model that incorporates meaning-focused coping and the importance of positive emotions, in
addition to the original model of problem-focused and emotion-focused coping. The course of
ALS entails progressive losses, of mobility, fine and gross motor skills, speech,
swallowing, and respiration. Each requires recalibrating emotional response and coping with
new challenges. Early intervention to strengthen coping skills may equip patients and care
partners to handle new challenges as they arise, although in this initial study we will not
follow patients long enough to observe long-term effects, if present. Based on successful
findings in this pilot study, the next step will be to conduct a larger RCT of the
intervention.

Specific Aims and Hypotheses

AIM 1. To adapt and refine a manual for Coping Effectiveness Training for recently diagnosed
ALS patients and their care partners (CET-ALS) based on Coping Effectiveness Training (CET).
We will seek input from interviews with patients (whom we know from their participation in
our ongoing studies), care partners and ALS clinic staff.

AIM 2. Feasibility and Acceptability: Evaluate acceptability, attrition, participant
satisfaction and perceived barriers and facilitators to intervention delivery.

PATIENTS:

Inclusion Criteria:

1. ALS diagnosis (possible, probable, or definite) in the past year

2. Expresses distress (4+) on Distress Thermometer, or symptoms of anxiety or depression
(VAS scales)

3. Speaks English

4. Able and willing to give informed consent

5. Speaks clearly enough for telephone communication

Exclusion Criteria:

1. Untreated or under-treated Major Depressive Disorder

CARE PARTNERS:

Inclusion Criteria:

1. Has a family member or close friend diagnosed with ALS (possible, probable, or
definite) in the past year

2. Expresses distress (4+) on Distress Thermometer, or symptoms of anxiety or depression
(VAS scales)

3. Speaks English

4. Able and willing to give informed consent