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

The Amputee Coalition’s 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 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

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. amputee-coalition.org 888/267-5669

Organizational Overview  The leading donor-supported, national non- profit organization serving the limb loss community  30 th Anniversary  Headquartered in Manassas, VA with a branch office in Knoxville, TN  19 staff members 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 amputee-coalition.org 888/267-5669

Limb Loss Community 2.1 million persons with limb loss 1% 22% 18% 21% 38% Under 18 18 - 44 45 - 64 65 - 74 75+

Amputation Levels Prevalence of Limb Loss by Amputation Level 35% 65% Lower Limb Upper Limb

Causes of Amputation 2012 - 131,510 amputations performed in US (Source: Healthcare Cost and Utilization Project [HCUP] Nationwide Inpatient Sample [NIS], 2012.) 1% 5% 27% 67% Trauma Dyvsvascular Diabetes Other

Adapting to Limb Loss Variety of assistive technologies • Prosthetic devices • Durable Medical Equipment • Home/Vehicle modificaitions

Living with Limb Loss Range of functional abilities Other health conditions/disabilities: • Diabetes • Depression • Traumatic Brain Injury • Post-Traumatic Stress

Consumer Knowledge Information prior to amputation No information about prosthetics 59% 53% No source of information about prosthetics Source: Seaman, JP. 2010. Survey of Individuals Wearing Lower Limb Prostheses. Journal of Prosthetics and Orthotics. Vol 22. No. 4.

Information Needs of PWLL • Questions Topics • Fears • Concerns • Method Delivery • Content • Other • How to deliver Approach • When to deliver • How much

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

Information Delivery • Hearing/vision loss, co-morbidities Age • Younger generation Pain/Medication • Impair ability to absorb information • Fear, anxiety, shock Emotions • Change perception of information • Distractions Environment • Friendly and supportive Education • Avoid technical terms

Patient Education Approaches • Pre-operative • Post-operative Timing • Verbal • Written Mode • Video • Too much • Too little Amount

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

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 amputee-coalition.org 888/267-5669

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

High Quality Materials Overall satisfaction with materials received, 2012-2015 70% 64.3% 67.0% 60% 48.9% 50% Percent 40% 34.0% 30% 20% 8.5% 19.6% 14.3% 10.7% 10% 6.2% 0% 7.2% 2012-2013 2013-2014 2014-2015 Very satisfied Somewhat satisfied Somewhat not satisfied Not satisfied amputee-coalition.org 888/267-5669

Useful Information Usefulness of materials received, 2012-2015 70% 65.0% 61.0% 60% 54.3% 50% Percent 40% 28.3% 30% 20% 18.6% 15.2% 22.0% 8.5% 10% 11.9% 3.0% 2.2% 10.0% 0% 2012-2013 2013-2014 2014-2015 Very useful Somewhat useful Somewhat not useful Not at all useful

Patient Education Materials  Publications  Brochures & booklets  Webinars  Videos

Publications InMotion First Step/Premier Paso Insurance Coverage and Reimbursement Guide Brochure Series • First Step • Pain Management amputee-coalition.org 888/267-5669

Benefits of Publications  Non-biased  Evidence-based  Patient centered approach  Reviewed by clinicians and consumers Free amputee-coalition.org 888/267-5669

Satisfaction with inMotion Content 80% 70% Very satisfied 71.2% 63.0% 60% Somewhat 50.0% satisfied 50% 46.3% Percent 40% Somewhat not satisfied 33.0% 30% Not at all satisfied 27.5% 20% 10% 3.8% 0.0% 2.0% 0% 2012-2013 0.9% 0.5% 2013-2014 2014-2015 amputee-coalition.org 888/267-5669

Usefulness of inMotion Articles 70% 64.2% 60% Very useful 49.4% 50% 49.5% Somewhat 44.7% 46.6% useful 40% Somewhat not useful 30% 32.8% Not at all useful 20% 10% 5.9% 2.9% 0.0% 0% 1.0% 2.2% 2012-2013 0.0% 2013-2014 2014-2015

Overall Satisfaction with First Step 90% 87.5% 78.9% 80% 78.0% 70% Very satisfied 60% 50% Somewhat satisfied 40% Somewhat not satisfied 30% 21.1% Not satisfied 20% 19.5% 10% 0.0% 9.7% 0% 0.0% 2.4% 1.4% 2012-2013 2013-2014 2014-2015 amputee-coalition.org 888/267-5669

Usefulness of Information in First Step 90% 85.7% 87.3% 80.5% 80% 70% 60% 50% 40% 30% 20% 14.3% 17.1% 10% 0.0% 12.7% 0% 2.4% 0.0% 0.0% 2012-2013 2013-2014 2014-2015 Very useful Somewhat useful Somewhat not useful Not at all useful

Your New Journey Folder  Evidenced-based Information New Amputees need Consumer and Clinician Reviewed Not Overwhelming  Available in Spanish amputee-coalition.org 888/267-5669

Your New Journey Packet  Folder  inMotion  Brochures  Secrets of Success  Pain Management  Phantom Limb Pain amputee-coalition.org 888/267-5669

Patient Education Booklet Redesigned in 2016  Below Knee  Above Knee  Upper Limb Coming in 2017! Hemipelvectomy/Hip Disarticulation Pediatric Population 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 amputee-coalition.org 888/267-5669

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

Hospital and Rehab Partners

Promoting Amputee Life Skills (PALS)  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) 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 online. • Helps PwLL learn and practice self-management skills such as problem solving, goal setting, communication and relaxation. • PwLL develop a personal self-management plan.

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

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

PALSAMPUTEELIFESKILLS.ORG

National Conference

Limb Loss Education Day (LLED) Events 2017:  One day • March – Orlando  Educational sessions • May - Boston  Adaptive sport & • June - Chicago recreations • October - Seattle  Local focus

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

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

Questions?