The document discusses the utilization of a Communication and Treatment Preference (CTP) assessment tool to guide care for patients with ALS. The CTP tool collects information on patient's legal documents, decision-making preferences, treatment goals, and preferences for receiving medical information. Data from 39 ALS patients who completed the CTP assessment showed that while most had legal documents, their specific treatment goals and information needs varied. Using the CTP helped clinicians better align treatment discussions with each patient's unique preferences and priorities.

1. The Utilization of a
Communication and Treatment
Preference (CTP) Assessment
to Guide ALS Patient Care
Susan Walsh RN, MSN, ACNS-BC, Regional Nurse
Manager, ALS Association Greater Philadelphia Chapter
Beth Stephens, MA, CCRC, Neuromuscular Research
Manager, Penn State Hershey Medical Center

2. Background
• As ALS progresses, patient’s goals of treatment may
change. An understanding of these goals is
essential for framing treatment decisions.
• Patients often believe that completion of an
advance directive is by itself sufficient, and may fail
to realize that conditions anticipated by advance
directives rarely develop in ALS, and that advance
directives are only one piece of the planning
process.
• A tool for assessing patients goals for care and
communication preferences may improve patient
care

3. Objectives
• Review the components of a communication and
treatment preference (CTP) form
• Examine patient CTP data from an ALS clinic
• Demonstrate the utility of a CTP form in an ALS clinic

4. Communication and Treatment
Preference (CTP) Assessment
• CTP assessment was developed using an evidence
based framework
• Goals of CTP assessment are to inquire about legal
documents, provide structure for ongoing discussion
about treatment options in ALS
• Aim of CTP assessment is to enable an enriched
partnership between the patient, family and clinical
team

5. Components of the CTP
Tool
• Presence of legal forms related advance care
planning
• Decision making preferences
• Informational preferences
• Identification of a surrogate decision maker
• Define patient-specific treatment goals
• Discussion of treatment and intervention options
related to ALS

7. CTP form Administration
• Pilot project tested for patient ease of
administration
• Evaluation project examined utility and perceived
usefulness of the tool with patients and clinicians
• Tool is now standard of care for all clinic visits.
• Mailed to patients in pre-clinic packet prior to each
visit, starting at 2nd visit.

8. Our ALS Clinic CTP Data
Cross-sectional, N=39 (1/3 of our clinic)
o 65% male
o Mean ALSFRSR 28.8/48
o Mean FVC 61%
o Mean QOL score* 6.92/10
These demographics represent previously
reported norms for our ALS Clinic.

9. Legal Documents

10. Decision Making
Preference

11. Treatment Goals

12. Presentation of
Information in the Clinic
Almost all (97%) patients wished to know when their
condition has worsened to the point that life
expectancy would be short

13. Patients wish to discuss
treatments and interventions

14. Discussion
• CTP forms provides structure in an ALS Clinic
o Is a means to assess for legal documents
o Prioritizes discussion of treatments and
needs
o Provides an opportunity to present
information that is in line with patient
goals for care and style preferences

15. Practice Implications
• CTP form is standard of care. It shows us where the
patient is at and allows us to respond to their current
questions and needs
• We changed our clinic practice after review of this data
such that a member of our research team is present and
visits with every one of our patients.
• We do not make assumptions about highly educated
patients or uneducated patients and their information
preferences.
• We utilize treatment goals as part of our decision making
algorithm for diaphragm pacers and invasive ventilation.
• More closely aligns our discussions with the patients
preferences for information and options

16. Download our Tools:
Turning Research into Practice:
• Communication and Treatment
Preference Tool
• ALS Specific Quality of Life Instrument
and Manual
• ALS Caregiver Assessment
• ALS/FTD Caregiver Assessment
• Cognitive Intervention Program Slides
www.pennstatehershey.org/als

17. Questions?