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

The Amputee Coalition’s National Limb Loss Resource Center Meet ing t he Informat ion and Resource Needs of t he Limb Loss Communit y amput ee-coalit ion.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.

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. amput ee-coalit ion.org 888/ 267-5669

Organizat ional Overview • The leading donor-supported, national non-profit organization serving the limb loss community • 30 th Anniversary • Headquartered in Manassas, V A with a branch office in Knoxville, TN • 19 staff members amput ee-coalit ion.org 888/ 267-5669

Organizat ional Reach • More than 300 support groups in our network • Over 1,000 Certified Peer Visitors across the country • 65,000+ friends in database • 100,000+ Facebook community • 800,000+ Web site visitors amput ee-coalit ion.org 888/ 267-5669

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

Amput at ion Levels Level of Limb Loss 35% 65% Lower Limb Upper Limb

Causes of Amput at ion 2012 - 131,510 amputations performed in US (S ource: Healt hcare Cost and Ut ilizat ion Proj ect [HCUP] Nat ionwide Inpat ient S ample [NIS ], 2012.) 1% 5% 27% 67% Trauma Dyvsvascular Diabet es Other

Adapt ing t o Limb Loss • Variety of assistive technologies

Living wit h Limb Loss • Range of functional abilities • Other health conditions/ disabilities: – Diabet es – Depression – Traumat ic Brain Inj ury – Post -Traumat ic S t ress

Availability of Patient Education Materials • Prior to Amputation – 53% - little to no information about prosthetics – 59% of no source of information about prosthetics S ource: S eaman, JP . 2010. S urvey of Individuals Wearing Lower Limb Prost heses. Journal of Prost het ics and Ort hot ics. Vol 22. No. 4.

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

Information Topics • Wound Management • Pain Experiences • Phantom Limb S ensation • Rehab Expectations • Prosthetics/ Assistive Technology • Financial • S upport • Recovery Process

Delivering Information • Hearing/ vision loss, co-morbidit ies Age • Y ounger generat ion Pain/ Medication • Impair abilit y t o absorb informat ion • Fear, anxiet y, shock Emotions • Change percept ion of informat ion • Dist ract ions Environment • Friendly and support ive Education • Avoid t echnical t erms

Pat ient Educat ion Approaches • Pre-operative • Post-operative Timing • Verbal • Written Mode • Video • Too much • Too little Amount

Programs and S ervices • Peer S upport Network • S elf-management programs • Educational Events • Y outh Camp • Patient Education publications • Information and Referral Center

Cert ified Peer Visit or 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 amput ee-coalit ion.org 888/ 267-5669

amput ee-coalit ion.org 888-267-5669

Y out h Camp • Free • Traditional summer camp • Ages 10 – 17 • Clarksville, OH • ~130 campers

Limb Loss Resource Cent er • S erves thousands of individuals each year • Provide free educational resources • Call Center – Monday-Friday 8:00am-5:00pm – Email, Web, and Phone Inquiries • Website – “ Library” of materials available • Publications amput ee-coalit ion.org 888/ 267-5669

S ample Resources • Customized Information Packets – S pecific to patient’s needs • E.g., Phant om Pain, Wound Care, S hoes • Local Resources – Home modifications amput ee-coalit ion.org 888-267-5669

Limb Loss Resource Cent er Overall satisfaction with materials received, 2012- Usefulness of materials received, 2012-2015 2015 70% 70% 67.0% 64.3% 65.0% 61.0% 60% 60% 54.3% 48.9% 50% 50% Percent Percent 40% 40% 34.0% 28.3% 30% 30% 20% 20% 18.6% 22.0% 15.2% 19.6% 8.5% 14.3% 10.7% 8.5% 10% 10% 11.9% 3.0% 6.2% 2.2% 10.0% 7.2% 0% 0% 2012-2013 2012-2013 2013-2014 2013-2014 Grant Year 2014-2015 Grant Year 2014-2015 Very satisfied Somewhat satisfied Somewhat not satisfied Not satisfied Very useful Somewhat useful Somewhat not useful Not at all useful amput ee-coalit ion.org 888/ 267-5669

Publicat ions • InMotion • First S tep/ Premier Paso • Insurance Coverage and Reimbursement Guide • Brochure S eries – First S tep – Pain Management amput ee-coalit ion.org 888/ 267-5669

Benefit s of Publicat ions • Non-biased and patient centered approach • Reviewed by clinicians and consumers • Free amput ee-coalit ion.org 888/ 267-5669

Benefit s of inMot ion Usefulness of inMotion articles, 2012-2015 Overall satisfaction with content of inMotion , 2012-2015 70% 64.2% 60% 80% 49.4% 49.5% 71.2% 50% 44.7% 46.6% 63.0% Percent 60% 50.0% 40% 46.3% Percent 30% 32.8% 40% 33.0% 20% 27.5% 20% 5.9% 10% 2.9% 3.8% 0.0% 2.0% 0.0% 1.0% 0% 0% 2.2% 0.9% 0.0% 0.5% 2012-2013 2012-2013 2013-2014 2013-2014 2014-2015 2014-2015 Grant Year Grant Year Very useful Somewhat useful Very satisfied Somewhat satisfied Somewhat not satisfied Not at all satisfied Somewhat not useful Not at all useful amput ee-coalit ion.org 888/ 267-5669

Benefit s of First S t ep Overall satisfaction with information in First Step , 2012- Usefulness of information in First Step , 2012-2015 2015 85.7% 90% 87.3% 100% 80.5% 80% 87.5% 78.9% 78.0% 80% 70% 60% Percent 60% Percent 50% 40% 40% 21.1% 30% 19.5% 20% 14.3% 0.0% 20% 17.1% 9.7% 0.0% 2.4% 0% 10% 0.0% 1.4% 12.7% 2.4% 0% 2012-2013 0.0% 0.0% 2013-2014 2012-2013 2014-2015 2013-2014 Grant Year 2014-2015 Grant Year Very satisfied Somewhat satisfied Very useful Somewhat useful Somewhat not satisfied Not satisfied Somewhat not useful Not at all useful amput ee-coalit ion.org 888/ 267-5669

Y our New Journey Folder • Evidenced-based • Informat ion New Amput ees need • Consumer and Clinician Reviewed • Not Overwhelming • Available in Spanish amput ee-coalit ion.org 888/ 267-5669

Y our New Journey Packet • Folder • First S tep • inMot ion • Amputation specific • Brochures amput ee-coalit ion.org 888/ 267-5669

Pat ient Educat ion Booklet • Amputation/ Topic specific resource • Undergoing complete redesign • Will be available 2016 – Below Knee – Above Knee – Upper Limb – Hemipelvectomy/ Hip Disarticulation – Caregiver – Pediatric Population amput ee-coalit ion.org 888/ 267-5669

Amputee Coalition Resource Center The “ Gat eway” of t he Amput ee Coalit ion amput ee-coalit ion.org 888-267-5669

Who We Are/ What We Do - We serve the limb loss community, their families, their friends, caregivers, hospitals, rehabilitation centers, social service workers and the public as a whole. - Anyone is welcome to contact the Resource Center for assistance. - Our resources and materials are provided free of charge to individuals. amput ee-coalit ion.org 888-267-5669

Cont act us • Inquiries come into the Resource Center in a variety of ways. • Via our toll-free number 1-888-267-5669 • Via our website www.amputee- coalition.org • Via the postal mail and the occasional drop-by at either of our offices. • Office hours are 8am-5pm (ES T Mon-Fri). amput ee-coalit ion.org 888-267-5669

Who Cont act s Us? – Anyone is welcome to contact us. – We receive inquiries, questions and comments from all 50 states as well as internationally. – Limited support for international requests. amput ee-coalit ion.org 888-267-5669

By The Numbers – Each inquiry or question the Resource Center receives becomes a case. – Each case is researched, fulfilled and documented in our database. – In 2015, we opened 4,361 cases (an average of 365 a month), and served 6,005 individuals. – S o far in 2016 we are averaging 460 cases a month, serving 491 individuals per month. amput ee-coalit ion.org 888-267-5669

S ame, but different • The Resource Center shares some similarities with 211 centers and CIL’s. • We field calls from the public, but we are not a traditional “ call center” . • S mall staff (3), no call queue system, not on the phone constantly (usually). • Maj ority of our time is spent researching cases. amput ee-coalit ion.org 888-267-5669