Virtual Townhall Meeting:

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

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RRTC Team

• Composed of national leaders in SCI medicine,
  research advocacy
• Consumers
• SCI clinicians
• SCI researchers
• SCI organizations
• Independent living advocates

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RRTC Mission

• Expand our understanding and prevention of
  secondary conditions after SCI, including
• Cardiovascular disease
• Osteoporosis
• Depression
• Quality of life
• Pain
• Decubitus ulcers
• Respiratory complications
• Participation from consumers
• Dedicated to education

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Secondary Conditions After SCI

• People with SCI are surviving longer
• Chronic diseases are now being seen in people
  with SCI
• Heart disease
• Cancer

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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

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Exercise

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

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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

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Cholesterol

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

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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

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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 ones diet, exercise level, or even
  start medications

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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

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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

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Osteoporosis and Broken Bones

• Without SCI
• Lower spine
• Wrist
• Hip

• With SCI
• Around the knee
• Lower leg

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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

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Other Questions

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

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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?

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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

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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

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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

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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

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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

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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

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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

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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!

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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

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Todays 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?