interdisciplinary approach to lower identified distress...

Interdisciplinary Approach to Lower Identified Distress Levels in

ALS Veterans

Catherine Wilson PsyD., ABPPCarrie Henry LCSW

Chava Litwin CRC, RMHCIJames A. Haley VA

- This material is the result of work supported with resources and the use of facilities at the James A. Haley Veterans’ Hospital, and does not represent the views of the Department of Veterans Affairs or the United States Government.

Michael Bilirakis VA Spinal Cord Injury CenterJames A. Haley Veterans’ Hospital Tampa, FL

Disclosures

The presenters have no financial or non-financial interests to disclose.

PESG staff, PVA staff, and planning/review committee members have no financial or non-financial interest to disclose.

This continuing education activity is managed and accredited by Professional Education Services Group in cooperation with Paralyzed Veterans of America. PESG, PVA, and all accrediting organization do not support or endorse any product or service mentioned in this activity.

Objectives:

Identify the Distress Thermometer and how it is utilized by Psychology

Describe the areas causing the most distress for the patient and caregiver

Discuss the impact of interventions by Psychology and Social Work over time at reducing subjective distress levels.

ALS SurvivalAbout 15% live 5 years after diagnosisAbout 5% live for more than 10 years. Long-term survival is associated with:younger age at onsetbeing malelimb (rather than bulbar) symptom

onset

Schmidt EP, et al. (2006). Muscle Nerve. 33(1):127-132 Saeed M, et al. (2009). Neurology. 72(19):1634-1639.

ALS Treatment

No cureDisease-modifying treatments:Antiglutaminergic agents: RiluzoleRadicava(New infusion drug)Some research on cannabinoid

pathways

Emphasis on multidisciplinary rehabilitation and Life Sustaining Treatment Decisions

Team Approach

Multidisciplinary TeamInterdisciplinary TeamTransdisciplinary Team

Learning/Decision Making in Multi & Interdisciplinary Practice: Relay

Karol RL. Neurorehabilitation 2014; 34: 655‐669

Nursing

Occupational Therapy

Physical Therapy

PsychologySpeech Pathology

Respiratory Therapy

Dietary

Physician

Minimal or no Role‐release

Transdisciplinary Practice



Physical Therapy

Psychology

Speech PathologyRespiratory Therapy

Dietary

Medicine

Biomedical Engineering

Telemedicine

Home Visitation

Issues‐focused

Role‐release … Professionally‐Appropriate Skill Set (PASS)

Patient

Molecular Biologist

Computer ScientistPatient Care Facilitator

Patient Advocate

Research Engineer

Private Contractor

Learning/Decision Making in Transdisciplinary Practice: Network


Psychology


Physical Therapy

Respiratory Therapy

Medicine

Speech Pathology

DietaryNursing

Patient

Role‐release

Growth of ALS Population

2213

26

41 38

26 22

34

56

2924

10 210

1522 20

2822

38 3729

1223

39

65

8187

81

105

123115

110

2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017

New ALS Death # of ALS Patients by the end of FY

Estimated Survival RateFor Veterans at JAHVAH

0.000.100.200.300.400.500.600.700.800.901.00

0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 5

Cumulative Survival

Survival TIme (Years)

Bulbar Cervical Lumbar Flail Arm Flail Leg PLS

Depression vs. Distress:Veterans with Amyotrophic Lateral

Sclerosis

Depression and ALS

Lower rates than other motor neuron disorders [Taylor et al. 2010]Parkinson

Disease: 45%Huntington

Disease: 50%ALS < 20% (severe

depression)

Depression not associated with ventilation status

Not associated with progression of disease [nor increased distress 5.5 months posttest] [Rabkin 2000]( Gauthier,2007)

Depression in ALS

Rates of depression in ALS are higher than general population (7%) [Kurt 2007; DSM-5]

Rates of depression is higher in Veterans 32% current/lifetime

[Black 2004]57.6% (<65yo); 30.5% (>

65yo)[Oslin 2003]

The rate of depression in Veterans with ALS is unclear

Depression in ALS is a risk factor for: [Rabkin 2000; McDonald et al., 1994; Kurt et al. 2007]Decreased QOL. Increased mortality.Refusal of noninvasive

intervention / Life prolonging measures.

Desire for hastened death.Requests for physicial-

assisted suicide.

Prevalence of Depression (ALS)

20%

17%

10%

3%

6%

11%

6%

FY 11 FY 12 FY 13 FY 14 FY 15 FY 16 FY 17

PHQ 9 > 10

Depression VS. Distress in ALS

High concordance of distress and depression between patients and caregivers [Rabkin 2000] (Gauthier,2007)

PHQ-9 Quick Dépression Assessment. If there are at least 4 items identified more than half the days or

everyday(including Questions #1 and #2), consider a depressive disorder. Add score to determine severity:(mild, moderate, moderate severe and severe)

Consider Major Depressive Disorder - if there are at least 5 items identified more than half the days or

everyday(one of which corresponds to Question #1 or #2) Consider Other Depressive Disorder - if there are 2-4 identified more than half the days or everyday(one

of which corresponds to Question #1 or #2)

National Comprehensive Cancer Network (NCCN) Distress needs to be sixth vital sign

Similar to the 0 to 10 scale for assessing pain, a visual analogue screening approach can be used to help patients rate their distress. The 0 to 10 scale can be visually displayed as the Distress Thermometer(DT).

Pain has become the fifth vital sign, after pulse, respiration, blood pressure, and temperature, ensuring that it is evaluated as part of routine care.

According to results of a meta analysis of 45 studies, 4 is recommended as the optimal cut-off

Using a score of 4 or above as the trigger for further questions and possible referral to a psychosocial service.

Potential advantages of the DT over the other screening tools are its brevity and acceptability for both healthcare providers and patients

Jacobsen PB, Donovan KA, Trask PC, et al. Screening for psychologic distress in ambulatory cancer patients. Cancer 2005;103:1494–1502. Ransom S, Jacobsen PB, Booth-Jones M. Validation of the Distress Thermometer with bone marrow transplant patients. Psychooncology 2006;15:604–612.

Distress and ALS

Distress clearly occurs at a significant level in at least one third of cancer patients

frequency and severity increases with advanced stages of illness

Therefore with advance progression of ALS distress might also increase

Standards for Psychosocial Care and Distress Management

Distress should be recognized, monitored, documented, and treated promptly at all stages of disease.

Patients should be screened for distress during the initial visit, at appropriate intervals, and as clinically indicated, with changes in disease progression.

Screening should identify the level and nature of the distress

Distress should be assessed and managed according to clinical practice guidelines.

Holland JC, Andersen B, Booth-Jones M, et al. Distress Management Clinical Practice Guidelines. J Natl Compr Canc Netw 2003;1:344–374.

Summary

Recognizing that the “people part” of ALS care like cancer is a vital component of a compassionate high-quality ALS system makes ethical, emotional, and economic sense

A simple way to screen for distress for both the patient and family member is to use the single-item question recommended by the NCCN

As experience with pain management emotional distress should be declared the sixth vital sign in the United States, as in Canada, to ensure that distress management, like pain management, becomes a routine part of ALS care.

METHODS Design: Retrospective Study Archival chart review of assessment results administered to

patients during routine annual psychological needs evaluations from Jan 2011 – Dec 2016

Setting: Spinal Cord Injury/Disorders clinic, James A Haley Veteran’s Hospital; Tampa, FL.

Particpants: Mean Age when diagnosed: 64.9 (SD 10.99, Median 66.0, Range 23-89)White: 91.9% (n=239), non-Hispanic origin 93.5% (n=243)Married 81.9% (n=213)Expired: 56.1% (n=146)Mean months of survival from diagnosis: 30.3 (SD 29.09, median 21.45, range 0.6 – 214.7)

• 151 patients who have had more than one distress score

• 103 patients who received more than one visit with psychology in Tampa (group 2)

• 57 patients who reside in area JAHVH service

• 48 patients who reside in JAHVH service had SW Interventions* (group 1)

Methods

Measures: Patient Health Questionnaire – 9 Items

(PHQ-9), Distress Thermometer and Problem

Checklist (DT & PC), Conner-Davidson Resilience Scale (CD-

RISC-25), Satisfaction With Life Scale (SWLS).

Top Categories of Distress:

Help at Home HHA Services Veterans Directed Program Hiring a Caregiver using Service Connection Compensation

End of Life and Advance Directive Education Discussing wishes and importance of Living Will Life Insurance Policy (Voc Rehab/PVA Assist)

Top Categories of Distress:

Housing Home Evaluation SAH Grant (Voc Rehab and PVA Assist) HISA Grant

Emergency Prep Hurricane Season Evacuation Plan Special Needs Shelters vs Hospitalization

Top Categories of Distress

Transportation VA Special Mode Travel vs Compensation Drivers Training Vehicle Grant (Voc Rehab/PVA Assist)

Finances Increase in compensation over time (Voc Rehab/PVA) VA Loan and Mortgage Insurance (Voc Rehab/PVA)

VA Veterans Benefits Service Connection

Special Monthly Compensation: R1/R2

ALS Disability Benefits Questionnaire (DBQ) VA form 21-0960-C

Examination for Housebound Status or Permanent Need for Regular Aid and Attendance (VA Form 21-2680)

HousingSpecially Adapted Housing

(SAH) Home Improvements and

Structural Alterations (HISA)

TransportationAuto and Special

Adapted Equipment Grant

InsuranceService-Disabled

Veterans Insurance (S-DVI)

Veterans Mortgage Life Insurance (VMLI)

State of Florida Veterans Benefits Additional Benefits

FederalAccess to military installation

State of FloridaEducation (scholarships) for dependent

children and spouses100% Property Tax ExemptionHandicapped toll permitDisabled veteran motor vehicle license plate

fee exemptionsDriver License Free Exemptions

Dependent BenefitsDependency and Indemnity Compensation

(DIC)InsuranceService-Disabled Veterans Insurance (S-

DVI)Veterans Mortgage Life Insurance (VMLI)

Burial and Plot Interment AllowanceMonth of Death payment

Vocational Rehab Benefits Coordination for Service Connection Increase

• Benefits Coordination Process• Receive Request from Veteran and/or ALS Interdisciplinary

Team Member (physician, psychologist, social worker, etc.) • Educate and Discuss benefits with veteran• Advise veteran they need to be honest with PCP

regarding limitations/care needed• Complete Required Form(s)

• Advise physician of information needed to be noted in the medical file

• Submit to Physician for review once completed• Provide to PVA for submission to VA Regional Office for

processing• Follow-up with PVA for status of pending benefits or

problems that arise

Results

Comparison of Patient-Distress score

Psychological & SW Intervention Group (Group 1)

Only Psychological Intervention group (Group 2)

ResultsComparison of S(Caregiver)-Distress score between two

groups Psychological & SW Intervention Group (Group 1) Psychological Intervention group (Group 2) Caregivers receiving both psychological and SW

intervention showed significantly reduced distress score from 7.3 to 5.5 (p < .000).

Overtime P‐Distress Score Changes

0.0

1.0

2.0

3.0

4.0

5.0

6.0

0 6 12 18 24 30 36 42 48 54 60

Mean P‐Distress S

cores

Months

Psychology & SW Intervention Psychology Only

Case Studies Veteran H

Diagnosed with ALS on 09/21/2015 Distress Level: Initial 10 and Last 5 SO Distress Level: Initial 7 and Last 6 Areas of stress that Psychology Addressed: Anxiety and his PTSD, End

of life Areas of Distress that Social Work Addressed: Housing, Help at

Home, End of Life and Advance Directive Discussion Areas of Distress Addressed by VRS: Service Connected Benefits

Increase (R1/R2) and Dependent Benefits Outcome: Veteran is currently home at home with his Wife. ALS has

progressed to point of requiring tracheostomy and ventilation.

Case Studies Veteran W

Diagnosed February 2014 Distress Levels: Initial 7 and Last 3 SO Distress Levels: Initial 8 and Last 3 Areas of stress that Psychology Addressed: Anxiety, Depression and

his PTSD and wife’s stress due to Patient’s unwillingness to follow medical advice

Areas of Distress that Social Work addressed: Help at Home, Respite, and End of Life and Advance Directive Discussion

Areas of Distress Addressed by VRS: Service Connected Benefits Increase (R1/R2), Vehicle and Home Modification Grants, and Dependent Benefits

Outcome: Veteran is living at home with his Wife. Veteran has been issued a Trilogy however has not started using it to date.

CONCLUSION

Questions

This Photo by Unknown Author is licensed under CC BY-SA

Obtaining CME/CE Credit

If you would like to receive continuing education

credit for this activity, please visit:

http://pva.cds.pesgce.com

Thank you.

interdisciplinary approach to lower identified distress...

Documents