Professional Documents
Culture Documents
Expected Outcomes:
OUTCOMES
CONSUMER GUIDE: E X P E C T E D
What You
Should Know
This guide has been prepared based on scientific and professional information found in Outcomes Following Spinal Cord Injury:
Clinical Practice Guidelines for Health-Care Professionals published September 1999. Users of this guide should periodically
review this material to ensure that the advice herein is consistent with current reasonable clinical practice.
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 1
Contents
Who Should Read This Guide?..........................................2
Medical History..............................................................14
Equipment Diary............................................................15
Insurance Information....................................................16
Acknowledgements ........................................................17
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 2
C2 STERNOCLEIDOMASTOID
NECK
C2 ACCESSORIES
C3
CERVICAL PARASPINAL
MUSCLES C4
C3
T2 T2
C4 T3
C5 T4
C5
T5
T6
T7
T1 T8 T1
C6 T9
C6
T10
T11
S3 T12
S4-5
L1
L2 L2
L L C6 C6
2 2 C8 C8
S2 S2 C7 C7
L3 L3
L L
3 3 BACK OF HAND BACK OF HAND
SENSATION L4 L4
L L
4 4 L5 L5
POSSIBLE SENSATION
S1 S1 DEPENDING ON
L5 L5 LEVEL OF INJURY
NO SENSATION
Locations of major
muscle groups are S1
S1
approximate
S1
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 6
Important:
Table 1 is a general guide for expected outcomes for a C1–3
complete spinal cord injury. It’s a goal to work toward, not a
guarantee! For every activity listed, some will not be appropri-
ate or achievable for everyone with a C1–3 SCI. Your outcomes
may not match table 1 within the timeframe suggested or you
may exceed the goals listed. The expected outcomes listed
here are based on research and clinical experience, but they’re
based on other people with SCI—not on you.
–1 portable ventilator
–Device for suction
–Backup for power failure
(generator or batteries)
4/18/02
Eating T
11:46 AM
Mobility:
–Bed T Bed:
Outcomes Consumer C1-3 color
Homemaking T
A Guide for People with Spinal Cord Injury
9
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 10
It’s a good idea for you and your health-care team to check
your equipment from time to time to make sure it’s in good
shape and working well for you. As you age, your equipment
needs may change. Rehabilitation staff can keep you up-to-
date about new designs and products that may fit your chang-
ing needs.
Modifications to your home and workplace will be needed
for you to do as much as possible. Safety and accessibility
are significant considerations. Ask your rehabilitation staff
for referrals to rehabilitation therapists who specialize in acces-
sibility for an evaluation of your home and work environments.
This should provide you with helpful architectural and other
changes that may help you accomplish as much as possible.
Activities can change over time. They can improve, lessen,
or both. Keep in touch with your health-care team for regular
reviews of how you are doing. They may be able to help meet
your needs with different services, assistance, equipment, or
repairs.
It is important to know that changes and improvements
in function will not happen all at once. Rehabilitation is a
lifetime process…it does not end when you leave the reha-
bilitation facility. In order to master your life after a spinal
cord injury, you will need courage, commitment, and a sense
of challenge.
A spinal cord injury does not necessarily lessen satisfac-
tion with life. Life satisfaction is your answer to the question,
“Is my life going well, according to the standards that I choose
to use?” Your degree of life satisfaction is not strongly related
to your type or your level of SCI. For example, some people
with C1–3 spinal cord injury can be more satisfied with their
lives than people without a spinal cord injury or with other
types of SCI. You will notice that your perspective on life will
change with time. As one individual noted, “The person I am
after a spinal cord injury is different, but improved from the
way I used to be. I still wouldn’t mind visiting the old me,
however.” Satisfied people have been found to take better
care of themselves, maintain their health, and prevent medical
complications.
Your personal satisfaction is more related to ways you con-
nect with others in the community. Therefore, your ability to
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 11
TABLE 2:
Questions and Actions
Questions Actions
Is there adequate money to • Review benefits.
meet housing, food, and • Budget with your financial planner, social worker, or
health-care needs? case manager.
How do I make and keep • Review your skills with your counselor or psychologist.
friendships and relationships? • Join a peer group.
How can I best organize and • Discuss personal care management with your health
manage my care? educator.
How can I feel useful and • Discuss vocational, volunteer, and education options
productive? with your vocational counselor.
• Work, go back to school, or volunteer.
How do I get around in my • Discuss transportation and community mobility with
community? your case manager, rehabilitation therapist, social
worker, independent living center, or local PVA chapter.
Appendix A
Medical History
Name ________________________________________________________________
Date of birth: ____/____/____ Sex: M or F
Date of spinal cord injury: ____/____/____
Equipment Diary
(e.g., wheelchair, bed, cushion(s), mattress/overlay, shower chair/commode)
received Expiration
Date Warranty
Manufacturer
Vendor/
Number
Serial
Size
Item Type
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 16
Emergency Information
Insurance Information
Attendant/Caregiver Information
Acknowledgements
The Consortium for Spinal Cord activities of daily living are a major
Medicine Clinical Practice Guidelines life-limiting problem. Creation of this
is composed of 19 organizations series of consumer guides required a
committed to improving spinal cord diverse, experienced, and sensitive
injury (SCI) care and treatment. The panel. The Consortium would like to
Consortium Steering Committee thank all members of the consumer
established a clinical guideline devel- guide panel for providing the essen-
opment (CPG) panel to make recom- tial ingredients of knowledge, experi-
mendations on expected outcomes ence, empathy, and practicality.
following SCI. The recommenda- The Consortium is also apprecia-
tions within this consumer guide are tive of the outstanding work of the
based on scientific research com- entire PVA publications support staff.
piled from 1966 to 1999 and used in In particular, the Consortium would
the Consortium’s CPG Outcomes like to recognize graphic designer and
Following Traumatic Spinal Cord illustrator Sarah Ornstein, PVA Senior
Injury: Clinical Practice Guide- Editor Patricia E. Scully, Project
lines for Health-Care Profession- Administrator Dawn M. Sexton, and
als. The CPG development panel Consortium Coordinator J. Paul
was assisted by an expert team from Thomas. Also, we would like to recog-
the University of North Carolina at nize professional writer Barbara
Chapel Hill who reviewed the litera- Shapiro for her work on the initial
ture and determined the quality of draft document.
the research. Paralyzed Veterans of In the end, it is those with SCI
America provided financial support who are continually living with their
and administrative resources for all injury are the best evaluators of a
aspects of guideline and consumer teaching tool such as this consumer
guide development. guide. The Consortium would like to
The consumer guide panel was thank the consumer focus group for
chaired by Gale Whiteneck and con- their critical review and comments on
sisted of five members with experi- the manuscript, including Chairman
ence in assessment of functional Fred Cowell, Ronald Amador, Craig
outcomes following spinal cord Bash, Robert Herman, Ronald
injury—Carole Adler, Sharon Black- Hoskins, Kenneth Huber, and John
burn, Robert Hendricks, Kelly John- Jackson. Their varied life experi-
son, and Harley Thomas. Meeting ences with SCI provided wise per-
life’s demands in spite of a spinal spectives that refined and improved
cord injury requires much adaptation. the consumer guide.
For many with SCI, limitations in
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 18
Notes
(This space can be used to record additional medical history details.)
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 20
Notes
(This space can be used to record additional medical history details.)
Outcomes Consumer C1-3 color 4/18/02 11:46 AM Page 22