Virtual Townhall Meeting: Reducing the Risk of Spinal Cord Injuries for People with SCI

Rehabilitation Research and Training Center: Secondary Conditions in the Rehabilitation of Individuals with Spinal Cord Injuries Research Sites: National Rehabilitation Hospital, Washington DC. University of Miami School of Medicine Collaborators: Independent Living Research Utilization Program The National Spinal Cord Injury Association Spinal Cord Injury Network

RRTC Team Composed of national leaders in SCI medicine, research & advocacy –Consumers –SCI clinicians –SCI researchers –SCI organizations –Independent living advocates

RRTC Mission 1.Expand our understanding and prevention of secondary conditions after SCI, including –Cardiovascular disease –Osteoporosis –Depression –Quality of life –Pain –Decubitus ulcers –Respiratory complications 2.Participation from consumers 3.Dedicated to education

Secondary Conditions After SCI People with SCI are surviving longer Chronic diseases are now being seen in people with SCI –Heart disease –Cancer

“Accelerated Aging” In people with SCI, this can be the occurrence of disease earlier than expected compared with able-bodied people In some cases, it can also mean that the disease occurs more rapidly or is more aggressive

Exercise Known to decrease the risk for many diseases, including diabetes, stroke, heart disease, and some cancers People with SCI exercise less than others

Cardiovascular Disease and SCI Diabetes occurs more often Heart disease occurs with the same or greater frequency in people with SCI Heart disease strikes people younger Heart disease is more advanced at diagnosis

Cholesterol Total cholesterol HDL = Healthy cholesterol = High LDL = Lousy cholesterol = Low Low HDL and high LDL contribute to heart disease risk

Cholesterol and SCI HDL tends to be lower –Can increase HDL with exercise LDL tends to be higher –Can decrease LDL by eating less fat and with medications

What We Are Doing… We will determine typical levels of the different types of cholesterol according to type of SCI Then, we can give recommendations about the need to change one’s diet, exercise level, or even start medications

Osteoporosis Decreased bone mass Typically occurs much more often in women than in men In women, it usually occurs after menopause Significant osteoporosis in men is rare Danger = fractures

Osteoporosis and SCI Men AND women affected Loss of bone mass starts within DAYS of SCI (hence “accelerated aging”) Loss of bone mass continues for months- years Loss of bone mass is much greater Loss of bone mass occurs below the SCI

Osteoporosis and Broken Bones Without SCI –Lower spine –Wrist –Hip With SCI –Around the knee –Lower leg

How Do I Prevent Osteoporosis? Exercise –Type of exercise dependent on type of SCI –Functional electrical stimulation –Standing –Walking Medications –Bisphosphonates, PTH, Statins showing promise

Other Questions There are numerous secondary conditions that occur after SCI –Breathing problems –Depression –Bladder infection –Skin breakdown

Other Questions Will regular exercise actually prevent these secondary conditions? What type of exercise is best for me? Where is the best place to exercise, at home or at the gym?

Some Answers….Soon We will try to determine the best place for and best type of exercise We will determine whether regular exercise actually does decrease secondary conditions after SCI

Training activities Prevent secondary conditions in people with newly acquired spinal cord injury as they get discharged from the rehabilitation hospital Educate future healthcare professionals about secondary conditions and the benefits of exercise from a consumer perspective

Prevention of secondary conditions NRH and SCI Network are developing a peer mentor program to monitor and prevent secondary conditions among people with new SCI 10 peer mentors will meet weekly by phone and in person with 150 mentees Peer mentors will be supervised weekly by hospital staff and SCI Life Consultants

What peer mentors do... Provide information about secondary conditions and prevention Demonstrate prevention techniques Discuss and answer questions around prevention and exercise Support community integration Initiate referrals to clinical providers when needed Update their information and training on an ongoing basis

The outcomes we are tracking Reduction in the occurrence of pressure ulcers, urinary tract infections, pain, neurocognitive problems, general deconditioning Fewer hospitalizations for avoidable complications Better self-management and control over SCI

Consumer Professional Partnership Program (CPPP) Consumer-directed and delivered education program about prevention and exercise for physical therapy and medical students Individuals with SCI will co-teach program at Washington DC area universities 1000 future health professionals will be trained in 3 hour sessions Integration in existing curricula and continuing education programs

CPPP continued... Content will focus on “what is important from a consumer perspective” Examples include “Barriers to obtain medical care”; “experiences with medical complications”; “patient-provider communication”; “consumer- defined strategies to prevent secondary conditions”; “benefits of exercise” Help us develop this program at the second Virtual Townhall Meeting in May

The Virtual Resource Network on Exercise and Prevention (VRNEP) RRTC partner ILRU is developing the VRNEP consisting of A fully accessible Internet site A Virtual Resource Library (publications and links about exercise and prevention) A video library Interactive meetings with SCI Life Consultants, Consumers, Advocates and Clinical Experts Check back, we need your input!

Virtual Townhall Meetings (VTHM) Every quarter over the next 5 years We ask for your support and input on RRTC topics Become a virtual RRTC member and participant

Today’s questions What are your personal experiences with secondary conditions related to spinal cord injury? As a person with SCI what are your personal experiences with exercise and physical activity? What would you like the RRTC on Secondary Conditions and Exercise accomplish?