The Stockholm Spinal Cord Injury Study
The first stage of the Stockholm Spinal Cord Injury Study (SSCIS), presented in this thesis, is based on a near-total regional prevalence population of 353 individuals with traumatic SCI. Medical, economic and psycho-social variables were assessed by semi-structured individual interviews, physical examination, questionnaires and review of medical records. Comparisons were made with a normative population sample. A computerised medical record system was adapted and implemented as the instrument for structuring investigations, data storage and processing.
The main findings were
1. Motor veichle accidents accont for almost 50% of cases, followed by falls (including diving), which accounted for more than 30% of cases.
2. Mean age at injury was 31 years. Over 50% of injuries occored in the 16-30 years age group.
3. The male:female ratio was 4:1.
4. The paraplegia:tetraplegia ratio was 3:2.
5. The incomplete:complete ratio was 3:2.
6. About 70% had experienced urinary tract infection.
7. About 40% had experienced decubitus ulcers.
8. About 20% had experienced urolithiasis, fractures, and spinal deformity, respectively.
9. Additionally, a wide range of less common complications from most organ systems were reported.
10. Problematic spastisity (among subjects with spastic paresis), and significant bladder and bowel dysfunction (most commonly due to incontinence and/or frequent infections, and constipation, respectively) all occurred in about 40%.
11. Significant chronic pain, most commonly of neurogenic type, was reported about 70%.
12. Neurological deterioration was reported by almost 30%. In 10%, this included sensorimotor loss.
13. Significant sexual dusfunction was reported by 50% of males and 25% of females. Almost 30% had not had sexual intercourse after injury.
14. Over 70% relied partially or totally on sick-pension.
15. Differing vulnerability across SCI subgroups:
a. More sexual problems and spasticity in males
b. More fractures, spinal deformity, sholder/neck pain, anxiety and fatigue in females
c. More pain in those injured at younger age
d. More medical problems and retirement in high and/or complete lesions
16. Difference between the SCI versus normative group:
a. Inferior health status, higher rate of health care consumption and sick-pension
b. More pain, bladder problems, fatigue, anxiety and insomnia
c. More use of antibiotics, laxatives, analgesics, sedatives, hypnotics
d. No increased prevalence of health disease, hypertension, diabetes, tumors
e. Inferior “intrinsic” economy
f. More restricted social activities
The main implications of the SSCIS
a. primary prevention programs should focus on the distinct high-risk groups and situations, and be designed to suit the target group.
b. tertiary prevention programs are necessary and should include life-long, structured, regular follow-up of all SCI oatients by qualified and specialized staff, with a high degree of vigilance för prevention and early detection of complications and serious functional impairments, and a more aggressive approach towards treatment of such problems
c. the high prevalence of severe neurogenic pain and neurological deterioration should lead to increased awareness of these problems, and intensified research in rehabilitative neurosurgery and other treatment modalities*
d. intensified vocational rehabilitation rather than sick-pension and further subsidies as primary means for enhancing, economical and psycho-social outcomes
e. implemmentaion of computer and information technology to facilitate functional centralization of SCI care in “virtual” SCI units.
KEY WORDS: computer, out-patient care, spinal cord injury, epidemiology, outcome, complications, neurological deterioration, health related issues