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

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

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

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

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

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.

Our ALS Clinic CTP DataCross-sectional, N=39 (1/3 of our clinic)

o 65% male

oMean ALSFRSR 28.8/48

oMean FVC 61%

oMean QOL score* 6.92/10

These demographics represent previously

reported norms for our ALS Clinic.

Legal Documents

Decision Making Preference

Treatment Goals

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

Patients wish to discuss treatments and interventions

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

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

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

Questions?