The Amputee Coalitions National Limb Loss Resource Center A - - PowerPoint PPT Presentation

▶
the amputee coalition s national limb loss resource center
SMART_READER_LITE
LIVE PREVIEW

The Amputee Coalitions National Limb Loss Resource Center A - - PowerPoint PPT Presentation

Apr 03, 2024 146 likes •601 views

The Amputee Coalitions National Limb Loss Resource Center A critical tool to help you meet the needs of your clients with limb loss George Gondo, MA Director, Research and Grants amputee-coalition.org 888/267-5669 Disclaimer: This

slide-1
SLIDE 1

The Amputee Coalition’s National Limb Loss Resource Center

A critical tool to help you meet the needs of your clients with limb loss

amputee-coalition.org 888/267-5669

George Gondo, MA Director, Research and Grants

slide-2
SLIDE 2

Disclaimer: This project was supported, in part, by grant number 90LL0002-01-00, from the Administration for Community Living, U.S. Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.

amputee-coalition.org 888/267-5669

slide-3
SLIDE 3

amputee-coalition.org 888/267-5669

Our Mission

To reach out to and empower those affected by limb loss to achieve their full potential through education, support, and advocacy, and to promote limb loss prevention.

slide-4
SLIDE 4

amputee-coalition.org 888/267-5669

Organizational Overview

The leading donor-supported, national non- profit organization serving the limb loss community 30th Anniversary Headquartered in Manassas, VA with a branch office in Knoxville, TN 19 staff members

slide-5
SLIDE 5

amputee-coalition.org 888/267-5669

Organizational Reach

More than 270 support groups Over 750 active Certified Peer Visitors 65,000+ constituents 115,000+ Facebook community 800,000+ Web site visitors

slide-6
SLIDE 6

Limb Loss Community

2.1 million persons with limb loss

1% 18% 38% 21% 22% Under 18 18 - 44 45 - 64 65 - 74 75+

slide-7
SLIDE 7

Amputation Levels

65% 35%

Prevalence of Limb Loss by Amputation Level

Lower Limb Upper Limb

slide-8
SLIDE 8

Causes of Amputation

5% 67% 27% 1% Trauma Dyvsvascular Diabetes Other

2012 - 131,510 amputations performed in US

(Source: Healthcare Cost and Utilization Project [HCUP] Nationwide Inpatient Sample [NIS], 2012.)

slide-9
SLIDE 9

Adapting to Limb Loss

Variety of assistive technologies

  • Prosthetic devices
  • Durable Medical Equipment
  • Home/Vehicle modificaitions
slide-10
SLIDE 10

Living with Limb Loss

Range of functional abilities Other health conditions/disabilities:

  • Diabetes
  • Depression
  • Traumatic Brain Injury
  • Post-Traumatic Stress
slide-11
SLIDE 11

Consumer Knowledge

Source: Seaman, JP. 2010. Survey of Individuals Wearing Lower Limb Prostheses. Journal of Prosthetics and

  • Orthotics. Vol 22. No. 4.

53% 59%

Information prior to amputation

No information about prosthetics No source of information about prosthetics

slide-12
SLIDE 12

Information Needs of PWLL

  • Questions
  • Fears
  • Concerns

Topics

  • Method
  • Content
  • Other

Delivery

  • How to deliver
  • When to deliver
  • How much

Approach

slide-13
SLIDE 13

Wound Management Pain Experiences Phantom Limb Sensation Rehab Expectations Prosthetics/Assistive Technology Financial Support Recovery Process

Information Topics

slide-14
SLIDE 14
  • Hearing/vision loss, co-morbidities
  • Younger generation

Age

  • Impair ability to absorb information

Pain/Medication

  • Fear, anxiety, shock
  • Change perception of information

Emotions

  • Distractions
  • Friendly and supportive

Environment

  • Avoid technical terms

Education

Information Delivery

slide-15
SLIDE 15

Patient Education Approaches

Timing

  • Pre-operative
  • Post-operative

Mode

  • Verbal
  • Written
  • Video

Amount

  • Too much
  • Too little
slide-16
SLIDE 16

NLLRC - Programs and Services

 Information and Referral Center  Patient Education materials  Peer Support Network  Self-management programs  Educational Events  Youth Camp

slide-17
SLIDE 17

amputee-coalition.org 888/267-5669

Information and Referral Center

Specialized I&R Center Provide free educational resources Call Center

  • Monday-Friday 8:00am-5:00pm
  • Email, Web, and Phone Inquiries

Website

  • “Library” of materials available
slide-18
SLIDE 18

Sample Resources

Customized Information Packets

  • Specific to individual’s needs
  • E.g., Phantom Pain, Wound Care
  • Local service providers refer to NLLRC

Local Resources

  • Home modifications
  • Refer to local service providers

amputee-coalition.org 888-267-5669

slide-19
SLIDE 19

amputee-coalition.org 888/267-5669

High Quality Materials

0% 10% 20% 30% 40% 50% 60% 70% 2012-2013 2013-2014 2014-2015

48.9% 64.3% 67.0% 34.0% 14.3% 19.6% 8.5% 10.7% 6.2% 7.2%

Percent

Overall satisfaction with materials received, 2012-2015

Very satisfied Somewhat satisfied Somewhat not satisfied Not satisfied

slide-20
SLIDE 20

Useful Information

0% 10% 20% 30% 40% 50% 60% 70% 2012-2013 2013-2014 2014-2015

54.3% 61.0% 65.0% 28.3% 18.6% 22.0% 15.2% 8.5% 3.0% 2.2% 11.9% 10.0%

Percent

Usefulness of materials received, 2012-2015

Very useful Somewhat useful Somewhat not useful Not at all useful

slide-21
SLIDE 21

Patient Education Materials

 Publications  Brochures & booklets  Webinars  Videos

slide-22
SLIDE 22

amputee-coalition.org 888/267-5669

Publications

InMotion First Step/Premier Paso Insurance Coverage and Reimbursement Guide Brochure Series

  • First Step
  • Pain Management
slide-23
SLIDE 23

amputee-coalition.org 888/267-5669

Benefits of Publications

Non-biased Evidence-based Patient centered approach Reviewed by clinicians and consumers

Free

slide-24
SLIDE 24

amputee-coalition.org 888/267-5669

Satisfaction with inMotion Content

0% 10% 20% 30% 40% 50% 60% 70% 80% 2012-2013 2013-2014 2014-2015

50.0% 63.0% 71.2% 46.3% 33.0% 27.5% 3.8% 0.9% 0.0% 2.0% 0.5%

Percent Very satisfied Somewhat satisfied Somewhat not satisfied Not at all satisfied

slide-25
SLIDE 25

Usefulness of inMotion Articles

0% 10% 20% 30% 40% 50% 60% 70% 2012-2013 2013-2014 2014-2015

44.7% 49.5% 64.2% 49.4% 46.6% 32.8% 5.9% 2.9% 2.2% 0.0% 1.0% 0.0%

Very useful Somewhat useful Somewhat not useful Not at all useful

slide-26
SLIDE 26

amputee-coalition.org 888/267-5669

Overall Satisfaction with First Step

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 2012-2013 2013-2014 2014-2015

78.9% 78.0% 87.5% 21.1% 19.5% 9.7% 0.0% 0.0% 2.4% 1.4%

Very satisfied Somewhat satisfied Somewhat not satisfied Not satisfied

slide-27
SLIDE 27

Usefulness of Information in First Step

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 2012-2013 2013-2014 2014-2015

85.7% 80.5% 87.3% 14.3% 17.1% 12.7% 0.0% 2.4% 0.0% 0.0%

Very useful Somewhat useful Somewhat not useful Not at all useful

slide-28
SLIDE 28

amputee-coalition.org 888/267-5669

Your New Journey Folder

Evidenced-based

Information New Amputees need Consumer and Clinician Reviewed Not Overwhelming

 Available in Spanish

slide-29
SLIDE 29

amputee-coalition.org 888/267-5669

Your New Journey Packet

Folder inMotion Brochures

  • Secrets of Success
  • Pain Management
  • Phantom Limb Pain
slide-30
SLIDE 30

amputee-coalition.org 888/267-5669

Patient Education Booklet

 Below Knee  Above Knee  Upper Limb

Redesigned in 2016

Coming in 2017! Hemipelvectomy/Hip Disarticulation Pediatric Population

slide-31
SLIDE 31

amputee-coalition.org 888/267-5669

Certified Peer Visitor Program

First peer visitor training held in 1993 Now over 1,000 certified peer visitors and growing! Extensive matching process Can request a peer visit online or by phone Non-biased and non-affiliated

slide-32
SLIDE 32

Importance of Peer Support

 No amputee is alone  Amputation is a personal experience  Common post-amputation issues can be addressed

  • Body image
  • Gender/Sexuality/Relationships
  • Return to work
  • Community reintegration

Video - https://vimeo.com/136636387

slide-33
SLIDE 33

Hospital and Rehab Partners

slide-34
SLIDE 34

 Self-management program  Partnership with Johns Hopkins School of Medicine  Evidenced-based  Improve post-amputation outcomes and quality of life

Promoting Amputee Life Skills (PALS)

slide-35
SLIDE 35

Promoting Amputee Life Skills (PALS) Overview

  • 8 lesson program designed to develop skills to improve the

quality of life for people who have lost a limb.

  • Available through in person classes and is now available
  • nline.
  • Helps PwLL learn and practice self-management skills such as

problem solving, goal setting, communication and relaxation.

  • PwLL develop a personal self-management plan.
slide-36
SLIDE 36

Model for PALS SM Intervention

Short term Outcomes Pain Depression Positive Mood Long term Outcomes Activity & Participation Quality of Life Immediate Outcomes Self-efficacy Catastrophizing Social support PALS PROGRAM

slide-37
SLIDE 37

PALS Online - Demonstration

www.palsamputeelifeskills.org

  • Public website – can learn more about program
  • To access the program need password- only

available to study participants at this time

  • Anticipate open access after study is completed

summer 2017

slide-38
SLIDE 38

PALSAMPUTEELIFESKILLS.ORG

slide-39
SLIDE 39

National Conference

slide-40
SLIDE 40

Limb Loss Education Day (LLED) Events

 One day  Educational sessions  Adaptive sport & recreations  Local focus 2017:

  • March – Orlando
  • May - Boston
  • June - Chicago
  • October - Seattle
slide-41
SLIDE 41

Paddy Rossbach Youth Camp

 Traditional summer camp  Ages 10 – 17  Leadership Camp  Ages 17 - 19  ~150 campers  All counselors have limb loss/difference

slide-42
SLIDE 42

Importance of Camp

 No amputee is alone  Builds independence and confidence  Promotes transition into next life stage  Normalizes experience Video: https://vimeo.com/147595284

slide-43
SLIDE 43

Questions?

slide-44
SLIDE 44

Thank You!

George Gondo, MA Director, Research and Grants ggondo@amputee-coalition.org

www.amputee-coalition.org