Individuals with spinal cord injury (SCI) need a variety of health care
services throughout their lifetime. Necessary health care services include
disability management related to ongoing monitoring and treatment
of their related health issues, basic primary care including health
promotion, disease prevention, and management of a variety of health and
disease states they may face. With an increasing number of individuals with
SCI being enrolled in managed health care plans, it is essential that
primary care providers become familiar with the health care needs of this
population. This article attempts to focus
the readerís attention on current therapeutic options.
Introduction. Individuals who have sustained a spinal cord injury (SCI) may
have intensive health care needs through the acute care phase, acute
rehabilitation, and in the early post rehabilitation period. However, the
need for health care services for these individuals does not end here.
Individuals with SCI need a variety of health care services throughout their
lifetime. Necessary services include disability management related to the
ongoing monitoring and treatment of their SCI related issues, basic primary
care including health promotion and disease prevention, and management of a
variety of health and disease states they may face.
Primary care physicians, and other health care providers, are likely to see
patients in their practices with a variety of disabilities that may include
SCI. Health care consumers with SCI are increasingly being enrolled in
managed care plans that require them to be seen by health care providers who
may not necessarily be specialists in SCI.1 Unquestionably, this will
challenge providers who are unfamiliar with the myriad of health care issues
people with SCI face.
The purpose of this paper is to provide
a review of some of the key health care issues that primary care providers
may face in caring for individuals with SCI. Issues that relate to the
ongoing monitoring and treatment of SCI, related and primary care concerns
including health promotion and disease prevention will be discussed.
Ongoing Monitoring and Treatment of SCI Related Health Issues. Management of
the Respiratory System. Respiratory complications are the most common cause
of death in the first year after SCI.2 As individuals age with SCI they are
at increased risk for respiratory related complications.2 The causes of
morbidity and mortality from respiratory complications are related both to
the neurological level and completeness of SCI and the normal changes in the
respiratory system associated with aging. Many common problems are the
direct result of a decreased
or absent vital capacity, an absent or weak cough, and the inability to
adequately clear secretions. Other changes that can effect the respiratory
system include skeletal deformities of the spine and chest, spasticity of
the abdomen and chest wall, and abdominal complications such as infection,
bloating and distension, and ulcer perforation. Neurological changes, such
as those associated with post-traumatic syringomyelia may lead to
respiratory compromise. Changes in the respiratory system over time may lead
to respiratory fatigue and changes in respiratory function. Changes
associated with aging include reduction in compliance of the chest wall,
decreases in lung compliance, reduction in numbers of alveoli, changes in
the bodyís response to chemoreceptor control, and decreases in the bodyís
immune system response. Other contributing factors to potential respiratory
complications include obesity and smoking.
Included in the SCI individualís evaluation by the health care
practitioner is assessment of the respiratory system. This assessment
includes history of smoking and exposure to second-hand smoke, influenza and pneumococcal vaccine status, knowledge regarding management of early
signs of congestion, and access to assistance with secretion management.
Forced vital capacity (FVC), forced expiratory volume in one second (FEV1),
and negative inspiratory force (NIF) are also periodically evaluated.
Spasticity, posture, abdominal distention, and other problems that may
impede respiratory function are included in periodic assessment and treated
Primary care for these individuals includes prevention of atelectasis and
pneumonia by teaching good pulmonary hygiene techniques, including the
management of secretions.4 Prompt treatment of respiratory infections is
stressed. Pneumococcal and influenza vaccines are highly encouraged,
especially for individuals with SCI with known respiratory compromise.
Management of the Urinary System. Urinary tract complications were once the
primary cause of morbidity and mortality in individuals with SCI. With
improved urologic management, as well as the introduction of broad-spectrum
antibiotics, morbidity and mortality related to urinary tract disease in
individuals with SCI has decreased dramatically.5 Neurogenic bladder,
including neurogenic sphincter dysfunction, is one of
the most challenging long-term management issues SCI survivors and their
health care providers face. As defined by Lanig,6 the
goals of long-term bladder management are preservation of the upper urinary
tracts, low storage and evacuation vesical pressures, and patient compliance
by choosing a technique that is appropriate for his/her lifestyle, manual
dexterity, and overall psychosocial situation. Changes in the urinary system
that may normally occur with aging include decreases in bladder capacity and
urethral compliance, increases in uninhibited detrusor contractions and
residual urine volumes, increased incidence of urinary tract infections (UTIís),
and increase incidence of benign prostatic hypertrophy, prostate cancer, and
prostatic calculi.6 These compounding effects on the urinary system can be
problematic for these individuals. Evaluation of the neurogenic bladder
should occur at 12 to 24-month intervals.6 The components of this evaluation
include assessment of renal function, structure of the upper and lower
tracts, vesicoureteral reflux, and calculi. Visualization of the bladder
epithelium may be warranted if the individual uses an indwelling catheter or
has experienced recurrent UTIís. Changes in the bladder wall, including
squamous cell carcinoma, have been noted with increased incidence in
individuals with SCI utilizing and indwelling catheter for bladder drainage.7 Urodynamic assessment may be warranted if there have been changes
in bladder function.6 Changes in bladder function, such as incontinence,
calculi, or an increase in UTIís may necessitate further evaluation with
an experienced urologist, and may necessitate changes in bladder management
strategies. Prevention and management of UTIís in these individuals is a
challenge in and of itself. It is beyond the scope of this article to
provide a complete review, but the reader is referred to the National
Institute on Disability and Rehabilitation Research Consensus Statement on
the Prevention and Management of Urinary Tract Infections Among People with
Spinal Cord Injuries.8 Suffice it to say that symptomatic bacteriuria should
be treated with antibiotics for 7 to 14 days. Asymptomatic bacteriuria need
not be treated with antibiotics. There is little evidence to support the
prophylactic use of antibiotics. In the event of an episode of febrile UTI,
possible contributing factors should be reviewed.8
Management of the Gastrointestinal Tract. Prolonged total colonic transit
time, decreased colonic compliance, and loss of voluntary control over
evacuation are changes that occur in the gastrointestinal (GI) tract after
SCI.9 Neurogenic bowel is commonly associated with SCI, and requires a
routine and diligent management program to prevent or minimize
complications, such as incontinence, constipation, impaction, abdominal
distention, and hemorrhoids. Individuals with SCI must maintain a regimented
bowel program with attention to diet, fluids, and exercise to avoid such
complications. Medications, such as anticholinergics, must be carefully
evaluated as these can have deleterious effects on bowel function, most notably severe
Gastrointestinal problems account for significant morbidity.10, 11 According
to Cosman,10 the GI problems that characterize chronic SCI are uncommon in
the first 5 years after injury, suggesting either that they are acquired
over time or that degeneration or decompensation of existing systems occurs
over time.10 GI problems identified in individuals with SCI may include
hypo-motility of the gut and bowel, gastric dilatation, increased incidence
of cholelithiasis, and abnormalities related to transport, storage, and
evacuation of the colon and rectum.10, 11
Primary care assessment and intervention include evaluating the
effectiveness of the bowel program, effects of medications on the bowel program, nutrition
and hydration status, and any problems with complications or prolonged bowel
routine.3 Evaluation of bowel routines includes frequency of the bowel
program, length of the bowel program, and any complications. Individuals are
encouraged to complete a bowel program every other day at the longest
interval to prevent constipation and other problems. Suppositories are
utilized as needed, but reserved until required and begun with the lowest
and advanced to the highest strength to promote an efficient and consistent
bowel program. Preventative action is incorporated into the periodic
assessment to include screening for occult blood, colonoscopy, and
Management of the Integumentary System. Management of the integumentary
system in individuals with SCI can also be a challenge for the primary care
provider. Pressure ulcer development is one of the most preventable of all
complications of SCI, but also one of the most prevalent, frustrating, and
expensive issues to deal with. Pressure ulcers have been reported to occur
in 30% to 60% of individuals with SCI in their lifetime.12, 13
As people age, the skin demonstrates decreased tissue mass and flexibility.
There is thinning of the epidermis and thickening of the collagen fibers.14
These changes in the skin predispose the aging individual to shearing and
pressure ulcer formation.14
Prevention is the major role of the primary care practitioner in management
of the integumentary system. Periodic assessment is necessary to assess the
patientís knowledge regarding risk factors for skin breakdown and how to
prevent, detect, and manage pressure ulcers. Equipment assessment is vital,
including age and condition of the bed and mattress surface, wheelchair,
seat cushion, back rest, and seating system. Posture, pelvic obliquity, and
spasticity induced shearing can lead to pressure ulcer development and
warrants evaluation in a periodic assessment. Body weight and nutritional
status play a large role in healthy skin and require regular assessment.3
Foot and nail care is essential in the primary care of individuals with SCI
and can prevent skin problems related to the feet and nails.
Autonomic Dysreflexia. Autonomic dysreflexia (AD) is an uncontrolled
response of the autonomic nervous system to noxious stimuli below the level of
injury. AD is unique to individuals with SCI above the level of T6. It is
critical that primary care practitioners who work with individuals with SCI
be familiar with this syndrome as it can be life threatening. One of the
most important signs and symptoms of AD is high blood pressure. (Note:
though blood pressure may be as high as 300/150, hypertension also can be
relatively low, due to the fact that ďnormalĒ blood pressure of 80/50 is
not uncommon for many individuals with cervical SCI). Bradycardia, headache,
blurred vision, blotchy skin, piloerection, sweating above the level of
injury, pallor below the level of injury, and anxiety are other important
signs and symptoms of AD. Treatment includes immediate detection and removal
of noxious stimuli below the level of injury. (The majority of the time it
is related to the bladder). Medications such as nitropaste or oral
nifedipine may be warranted in the early management of AD. A clinical practice guideline on acute management of AD is available from
the Paralyzed Veterans of America in Washington, DC.13
Management of the Cardiovascular System. Deep venous thrombosis,
cardiopulmonary arrest, and pulmonary embolism are major causes of morbidity
and mortality in the acute phase and in the first year following acute SCI.16 Nonischemic and ischemic heart disease, as a primary or contributing
cause, account for 22.4% of all deaths in individuals with chronic SCI,
second only to pneumonia and other diseases of the respiratory system.16
Sedentary lifestyle, obesity, and decreased lean body mass all increase the
risk for cardiovascular problems in this population.17
Primary care for these individuals includes an assessment of cardiac risk
factors, appropriate counseling, and intervention. Exercise and adapted
exercise should be incorporated into a health routine for individuals with
SCI. Diet, weight control, physical activity options, and smoking cessation
resources should be available as a component of primary care for this
Neurologic Changes. Neurologic complications commonly associated with SCI,
which may be encountered in the primary care setting, are spasticity,
entrapment neuropathies, post-traumatic cystic myelopathy, and chronic pain.18 Spasticity may have beneficial effects on the health and function of
individuals with SCI, however, it may also be problematic. Medications,
local nerve blockers, dorsal column stimulators, intrathecal infusion pumps,
and destructive and ablative surgeries have all been utilized in the
treatment of problematic spasticity.19 Treatment
of spasticity with medications can be managed in the primary care setting.
It would be advisable to seek expert intervention from SCI specialists if
further intervention is warranted for management of spasticity.
Entrapment neuropathies of the median and ulnar nerves are frequently seen
in individuals with SCI due to use of adaptive equipment for mobility, and
common wrist positions utilized by individuals with SCI during activities of
daily living. Counseling on wrist conservation/preservation techniques
should be the focus of primary care.18 Many individuals with SCI have focal
cystic cavities of the spinal cord at the site of injury. Most do not
progress and become symptomatic, but if they do, it can mean a loss of
function. The most common presenting symptom is that of new or worsening
pain, radicular or local in nature. Increased or decreased spasticity,
hyperhidrosis, autonomic dysreflexia, and loss of motor or sensory function
may also be presenting symptoms. Treatment consists of neurosurgical
Deafferentation pain, or neurogenic pain, is characterized as a tingling,
burning, or aching pain below the level of injury. The prevalence of disabling pain has been reported to range from 18% to 63%
of the SCI population.20 Chronic pain in SCI is often recalcitrant and
refractory to many interventions. Treatment options include general health
promoting, relief from exacerbating factors, psychotherapeutic
interventions, non-narcotic pharmacologic treatment, narcotic treatment,
physical therapy, and surgical intervention.21 Although individuals with SCI
frequently present to their primary care provider with chronic pain,
treatment is best accomplished with an interdisciplinary team that
specializes in pain management.
Psychosocial Issues in Primary Care. There are numerous psychosocial issues
that effect the individual with SCI and may have a bearing on health and
primary care needs. Most individuals, 92.3%, with SCI live in the community
unless their self-care and health-care needs exceed that which their care
givers can provide, or they lack a social support system altogether.22 A
major goal of health care for this population is to keep them healthy and as
self-sufficient as possible to prevent unnecessary institutionalization.
Quality of life is reported as high in individuals with SCI.22 While quality
of life is a subjective measure, objective factors that may effect quality
of life are increased medical complications and failing health, diminished
financial resources, aging of family and care givers, death of a spouse, and
need for increased personal assistance.23 These issues require periodic
assessment and an interdisciplinary treatment approach in a primary care
setting. Financial resources have a bearing on a multitude of health related
issues including vocational integration, equipment acquisition, proper
nutrition, transportation, and home health assistance. All members of the
primary health care team need to be knowledgeable regarding financial
resources available to this population.24 Access to quality home care
assistance can reduce the risk of medical complications and may prevent
hospital admissions.24 The primary care provider must be knowledgeable
regarding home care resources to assist the individual with SCI with
changing home care needs.
Substance abuse is higher in individuals with SCI than it is in the general
population.24 Screening for substance abuse should be a routine part of
primary care for this population. Physical and sexual abuse is also higher
in this population as compared to the general population.25 Therefore,
screening for physical and sexual abuse must be a component of primary care
for individuals with SCI.
Primary Care Concerns for Individuals with SCI. Routine Health Surveillance.
Routine health surveillance is important and includes the specific
disability related health areas addressed earlier in this article. Primary
care for this population would also include assessment that a primary health
care provider would consider for any other patient of similar age and with
similar risk factors. There are preventative care guidelines available that
are helpful in managing SCI patients in a primary care setting. The adult
preventative care guidelines for spinal cord injury was developed by Johnson
and Chase26 as part of
a grant to develop a nurse-managed health promotion and disease prevention
program for individuals with SCI. The preventative care time line produced
by the US Public Health Department,27 and the Follow-up Guidelines for
Healthy SCI Survivors produced by the Rehabilitation Research and Training
Center on Aging with SCI at Craig Hospital28 are two additional preventative
Access to primary care can eliminate or reduce medical complications. An
environment free of architectural, attitudinal, and financial barriers is
essential to the provision of primary care to individuals with SCI. The environment must provide for
easy access not only into the office, but also into exam rooms and onto exam
tables.29 Additional assistance may be required to get onto an exam table,
get set up for a gynecological exam, or gain access to a mammography
machine. Extra appointment time may be required to complete an exam if an
individual needs assistance with transfers onto exam tables or with dressing
and undressing. Attitudes
about individuals with disabilities demand attention as we begin to see more
with disabilities in primary care practices.
Health Promotion and Disease Prevention. Individuals with SCI are at
significant risk for secondary disabilities. Important health promoting
behaviors identified are proper nutrition, stress management, weight
control, smoking cessation, physical fitness, elimination of substance
abuse, prevention of disease and injury, enhancement of social support, and
regular monitoring of health status.30 The goals are to preserve and enhance
functional independence, reduce handicap, and reduce the risk of preventable
secondary impairment, secondary disability, and secondary handicap that may
be superimposed on the original consequences.30 SCI survivors have
identified primary health care services of importance to them. These
services include information about equipment, how to prevent joint
contractures, planning an exercise program, assistance in coping with
stress, sexual health services, relaxation training, referral to a fitness
facility, education regarding prevention of deep venous thrombosis, advice
about diet and weight control, and basic diet and nutrition information.26
These health promotion and disease prevention services are important
components of primary care for this population.
Conclusion. Providing primary care for individuals with SCI can be a
challenge in a setting unaccustomed to working with this population. As more
individuals with SCI are enrolled in managed care plans, it is likely that
primary care practices may be required to provide services to patients with
SCI. A comprehensive interdisciplinary approach is the best approach to
meeting their healthcare needs. This includes a cooperative effort with
specialized rehabilitation health care teams. Providing an environment that
is free of architectural, attitudinal, and financial barriers is in the best
interest of the patient and the primary care providers. The ability to
provide primary health care services for common problems of SCI is
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