- Email: [email protected]
Quality of life and traumatic spinal cord injury
1433
Quality of Life and Traumatic Spinal Cord Injury Ninni Westgren, CNM, Richard Levi, MD, PhD ABSTRACT. Westgren N, Levi R. Quality of life and traumatic spinal cord injury. Arch Phys Med Rehabil 1998;79: 1433-1439. Objective: To determine associations between major outcome variables after traumatic spinal cord injury (SCI) and quality of life (QL). Subjects: Of a total population of 353 SCI patients, 320 participated, 261 men and 59 women living in the greater Stockholm area: 124 were tetraplegic, 176 were paraplegic, and 20 had no classified level. Mean age was 42 years (range, 17 to 78). Method: The Swedish SF-36 Health Survey was used to assess QL. The SF-36 is a self-administered questionnaire containing 36 items, divided into 8 multi-item dimensions, covering physical function, physical and emotional role function, social function, bodily pain, mental health, vitality and overall evaluation of health. Neurologic, general medical, and psychosocial variables were obtained from the Stockholm Spinal Cord Injury Study (SSCIS) data base. QL indices were analyzed for the SCI group as a whole, as well as for subgroups. Descriptors for subgroups were demographic variables, presence or absence of common medical problems, and subjective evaluation of the degree of impact of the medical problem on well-being/daily activities. Results: QL in individuals with SCI was significantly lower in all subscales as compared with a normative population. No difference in QL was seen in subgroups according to extent of lesion, with the exception of physical functioning. Several medical complications such as neurogenic pain, spasticity, and neurogenic bladder and bowel problems were associated with lower QL scores. Summary: QL, as defined by SF-36, is better in persons injured many years ago, as compared with those recently injured, suggesting an adaptive process operating over a long period. The presence of complicating medical problems, such as severe pain, problematic spasticity, and incontinence, seem to have more negative effects on QL than the extent of SCI as such.
© 1998 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation SSESSMENTS OF quality of life (QL) are increasingly A used in medicine, embracing a wide range of target groups ~4 and populations as a whole. Conceptualizations vary,
Fromthe SpinalisSCIResearchUnitand Departmentof ClinicalNeuroscienceand FamilyMedicine,KarolinskaInstitute,Stockholm,Sweden. Submitted for publicationJanuary 15, 1998. Acceptedin revisedform May 18, 1998. Supportedby grantsfromStiftelsenLarsHiertasMinne,SiSdraSverigesSjuksktiterskehem,SSSH,LundandV:~rdalStiftelsen. No commercialpartyhavinga directfinancialinterestin the resultsof the research supporting this article has or will confer a benefitupon the authors or upon any organizationwithwhichthe authorsare associated. Reprintrequeststo NinniWestgren,CNM,SpinalisSCI ResearchUnit,Norrbacka S1, KarolinskaHospital,SE-17176 Stockholm,Sweden. © 1998 by the AmericanCongressof RehabilitationMedicineand the American Academyof PhysicalMedicineandRehabilitation 0003-9993/98/7911-482153.00/0
but there seems to be agreement on the synthesis of objective and subjective dimensions of QL, including personal values and aspirations. A widening range of treatment opportunities creates a need for evaluation of outcomes with respect to the impact on QL. In addition, as financial resources are limited, costeffective management demands quality assurance and monitoring of outcomes of rehabilitative procedures. One group that has been studied with regard to QL is that of individuals surviving spinal cord injury (SCI). 5-9 Medical management of SCI is designed first to save lives and second to minimize the consequences of the trauma, thereby optimizing the conditions for long-term survival with a good QL. With improved medical care the number of SCI survivors grows, thus making the need for better knowledge and understanding with regard to subsequent disability and handicap more apparent. Previous studies on SCI and QL have varied considerably with respect to method as well as analysis. Selected hospital groups have often been surveyed by mailed assessment packages, resulting in biased samples and low response rates. A commonly used method is a compiled survey with an overview of issues 10,11 or the opposite, focusing on a single issue, eg, social support and QL. 5,12In addition, insufficient consideration has sometimes been given to the heterogeneity in an SCI population with respect to medical and neurologic status. This study was done to assess QL in a true prevalence population by using a well-documented instrument that has been used for other target groups 13 as well as for general populations, 14 thereby allowing comparisons to be made. This study is part of the Stockholm Spinal Cord Injury Study (SSCIS), in which a regional prevalence population is evaluated with regard to medical, psychosocial, and economic outcome variables. 15~7 By the design of SSCIS it is thus possible to gain insight into the association between clinical patient descriptors and QL. The specific aim of this study was to identify associations between variables of empirical clinical importance and QL in a nonselected SCI population. SUBJECTS AND M E T H O D S The SSCIS 15"17 is a comprehensive survey of subjects with
traumatic SCI, constituting 93% of the regional prevalence population in the greater Stockholm area. All 353 subjects in the SSCIS were invited to participate in the present study and 320 accepted. The group comprised 261 men and 59 women; 124 individuals were tetraplegic, 176 were paraplegic, and 20 had no classified level. The mean age was 42 years (range, 17 to 78). The Swedish SF-36 Health Survey was used to assess QL. Is The SF-36 is a self-administered questionnaire containing 36 items. It measures health in eight multi-item dimensions, covering functional status, well-being, and overall evaluation of health (table 1). For each dimension, item scores are coded, summed, and transformed onto a scale from 0 to 100, on which 0 indicates worst health and 100 best health. 13,14,19-21 The Swedish version of the SF-36 has been translated and validated against a norm group by Sullivan and colleagues. 22 Their norm group was comprised of 8,930 individuals with a gender distribution of 48.6% men and a mean age of 42 years. The Swedish SF-36 Health Survey was produced within the frameArch Phys Med Rehabil Vol 79, November 1998
1434
QUALITY OF LIFE AND TRAUMATIC SCI, Westgren Table 1: The SF-36 Subscales and Descriptive Statistics for the SCI Group (n = 320) in Comparison With Swedish Normative Data (n = 8,930)
Low Scores Indicate
Subscale Function Physical functioning Role function, physical Role function, emotional Social functioning Bodily pain Well-being Mental health Vitality General health
Label
Limitations in physical activities Problems with work/daily activities as a result of physical health Problems with work/daily activities as a result of emotional problems Interference with normal social activities due to physical/emotional problems Limiting pain Feelings of nervousness and depression Feelings of fatigue Feelings of poor health, likely to get worse
n~tern
SCI Group
Normative Group
M
SD
M
SD
t
p
ES
PF RP
10 4
42.5 57.2
31.6 42.6
87.9 83.2
19.6 31.8
-39.6 14.2
.001 .001
2.31 .82
RE
3
70.4
40.4
85.7
29.2
-9.1
.001
.52
SF
2
76.7
26.4
88.6
20.3
-10.2
.001
.59
BP
2
57.2
28.5
74.8
26.1
-11.7
.001
.67
MH VT GH
5 4 5
74.8 61.4 63.9
20.4 23.0 23.8
80.9 68.8 75.8
18.9 22.8 22.0
-5.7 5.7 9.5
.001 .001 .001
.32 .33 .54
* Number of items included in the subscale.
work of the International Quality of Life Assessment (IQOLA) Project to match the original version. 14'15,E9-21 Neurologic, general medical, and psychosocial variables were obtained from the SSCIS database. The SSCIS protocol and the method of data collection has been published previously. 23 QL indices were analyzed for the SCI group as a whole, as well as for subgroups. Descriptors for subgroups were based on demographic and injury data (age, age at injury, time since injury, extent of injury, gender), criteria for presence or absence of common medical problems related to the SCI, and evaluations by the patient regarding the impact of the medical problems on well-being/daily life. The subgroups were thus defined by variables that are commonly used in clinical practice to describe individuals with SCI. The medical problems were operationally defined as follows: • Neurogenic pain Definition: Pain of a burning, stabbing, or sharp-shooting quality segmentally at or diffusely below the neurologic level of lesion for at least the 2 previous weeks or for at least four 2-week periods during the past year. Criteria: Classified according to the definition by the neurologist after eliciting a detailed pain history. Patient evaluation: The pain, according to the definition, has a moderate to strong influence on well-being/daily life. • Pressure sores Definition: Skin lesions caused by pressure and resulting in skin breakdown and requiring treatment. Criteria: A sore, according to the definition, treated during the previous year, as documented by medical record/ history and/or present at examination. Patient evaluation: A pressure sore, according to the definition, has a moderate to strong influence on wellbeing/daily life. • Spasticity Definition: A syndrome associated with upper motor neuron lesions, including one or more of the following: a velocity-dependent increase of tonic stretch reflexes, increased tendon reflexes, or other release phenomena such as increased flexor reflexes/flexor spasms. Criteria: The presence of spasticity, according to the definition, at the time of examination. Patient evaluation: Spasticity, according to the definition, has moderate to strong influence on well-being/daily life. Arch Phys Med Rehabil Vol 79, November 1998
• Bladder function problems
Definition: Disturbance of urologic function, secondary to SCI, leading to incontinence, recurrent urinary tract infections, or both. Criteria: Presence of symptoms, according to the definition, documented by medical records/history. Patient evaluation: A urologic problem, according to the definition, has a moderate to strong influence on wellbeing/daily life. • Bowel function problems Definition: Disturbance of bowel function, secondary to SCI, leading to constipation and/or incontinence. Criteria: Constipation and/or fecal incontinence, according to the definition, documented by medical records/ history. Patient evaluation: A bowel problem, according to the definition, has a moderate to strong influence on wellbeing/daily life. • Sexual dysfunction Definition: Impairment of sexual function secondary to SCI, leading to, eg, impotence, anejaculaton, anorgasmia, and/or positioning problems in men, and, eg, diminished vaginal lubrication, anorgasmia, and/or positioning problems in women. Criteria: Sexual dysfunction, according to the definition, documented by medical records/history. Patient evaluation: Sexual dysfunction, according to the definition, has a moderate to strong influence on wellbeing/daily life.
Data Analysis The association between clinical and demographic variables and QL ratings were tested using the t test, comparing the levels of QL in subjects with and without the given characteristic or symptom. A two-tailed t test of significance was used. An estimate of the magnitude of mean differences was also computed along each t test. This effect size (ES) is calculated as the difference between the two means divided by the standard deviation (SD) of either group. In this study, the SD corresponding to the comparison group (ie, the group without the given characteristic), was used to calculate the ES. Interpretation of ES was based on Cohen's 24 definition of three levels of ES for use when testing differences between means. The levels given
QUALITY OF LIFE AND TRAUMATIC SCI, Westgren
by Cohen are .20, .50, and .80, corresponding to small, medium, and large effects, respectively. The p values for each t test, as well as the corresponding ES for each comparison, are given in tables 1 through 3. The risk of making either a type I or a type II error asked for a reasonable level for accepting a result as both statistically and clinically significant. The actual p values are given with the calculated ES, whereby the reader has the possibility to make his or her own correctional levels. Firstly, a correction of the p values was done, dividing .05 with the number of SF-36 scales, resulting in a new significance level approximating .006. Secondly, a series of power analyses were computed to define the power corresponding to Cohen's suggested ES levels. With a medium effect chosen as the critical ES level, the power analysis yielded a power above .80 in all comparisons but two (gender, power = .76; and pressure sores, power = .35). Thus, calculating with .006 as the critical significance level, we accept that we have only power to detect effects above .50.
RESULTS The SCI group scored significantly lower than the normative group on all subscales (table 1). The difference in QL was large in the subscales physical function and physical role function, where the ES exceeded 0.8. Medium effect was seen in all other subscales except mental health and vitality, where the ES was small. Differences in levels and completeness of lesion was not reflected in QL scores, with the exception of a lower score in the physical function subscale with more extensive neurologic deficits (fig 1, table 2). Age at injury made a difference when evaluating QL. A comparison between age groups of those 20 years and younger and those older than 20 years at injury showed that younger persons scored highest with respect to physical function, physical role function, bodily pain, and social function (table 2). QL scores were higher in subgroups with longer time since injury (fig 2). This was illustrated by significantly lower scores on both physical and emotional role function as well as social function in the group who had been injured 0 to 4 years than the group injured 18 to 44 years. The latter group came close to the norm in the subscales physical function, bodily pain, general health, vitality, and mental health. The remaining subscales showed no significant differences between groups (table 2). Gender difference was seen in vitality, where women scored lower than men (table 2). When evaluating the impact of marital status on QL, single persons scored significantly lower on vitality and emotional role function as compared with the married/cohabitating group (table 2). No difference in QL was found between the full-time employed SCI group and the normative group. In contrast, significantly lower scores were found in all eight subscales among those working less than full time or who were not employed (table 2). Among individuals with medical problems, neurogenic pain, problematic sp~ticity, and bladder problems were associated with lower QL. ES was large for neurogenic pain on the subscale bodily pain and medium on general health. Of the studied medical problems, neurogenic pain was the most pronounced denominator of low QL. Bladder problems had a medium ES on QL in the subscale general health, whereas problematic spasticity affected all subscales except bodily pain and general health with a medium ES (table 3). The presence of pressure sores was associated with a lower QL in the physical function and social function subscales (table 3). Problems with bowel function were associated with a lower QL in all subscales but the physical role function (table 3). Sexual dysfunction was
1435
associated with a lower QL in the subscales general health and social function (table 3). DISCUSSION The present study is the first survey of QL in a near-total regional population of SCI subjects using a well-documented instrument. A further advantage was a high response rate (91%). The main purpose of the study was to compare QL between SCI subgroups. This was possible because of the availability of detailed data with regard to demographic and medical descriptors. The study lacks a matched control group in some important aspects. Any comparison between the SCI population and the norm group should thus be made with caution. However, the comparison gives a general perspective on QL after SCI. Associations found between different variables and lower QL scores do not necessarily reflect causal relationships. The SF-36 has been validated and found to be a feasible tool for assessment of QL in the general population 14,15,19,2°as well as in different patient groups. 21,22It is considered important that a health survey is sensitive and comprehensive to the full range of illness and therefore tools designed for a particular disease are of less value because an individual may have other health problems than those connected with the injury or disease studied. QL after SCI is lower in all studied variables than in able-bodied individuals of the same age. An impaired QL is in accord with some previous studies in SCI subjects. 7,25 Interestingly, the explanations for a decreased QL in SCI subjects put forward by different authors vary considerably. Within our SCI study population, no difference in QL was seen when comparing the subgroups incomplete paraplegia, complete paraplegia, incomplete tetraplegia, and complete tetraplegia, except for physical function. Several reports point to the subordinate importance of extent of injury and perceived QL. 6'25-27 Clayton and Chubon's study 7 contradicts these findings. A recent meta-analysis of 32 reports from 1983 to 1992 suggested that the severity of the injury correlates negatively with QL, but concluded that due to limited rigor of research design and poor validity of measurements definitive conclusions could not be drawn from these studies. 9 Higher age at injury has a negative impact on recovery. Stensman s reported that age older than 35 years at the time of injury was associated with a reduced capacity to cope with the injury as assessed by QL evaluations. The aging of the body and the mind and the gradual loss of vitality puts limits and requires both medical and social assistance to a large extent. Gender difference is currently gaining more attention in medicine. In this study women scored lower than men with respect to vitality. We have previously shown that a larger proportion of women in an SCI population report medical, social, and psychological problems than men. ~6 Women with SCI are also overrepresented in the group suffering from psychiatric ill health. 28 This was not reflected, however, in their QL scores as measured by SF-36. The adaptive process seems to operate over a long time, as is suggested by higher QL scores in subgroups having lived longer with their injury, despite the fact that with increasing time after injury, the cumulated percentage of most complications increases successively. 16 Our study is at variance with that of Cushman and HassettY who reported no difference in QL with regard to time since injury. Being married or cohabitating may have a positive effect on vitality and emotional role. This is in agreement with previous articles on social support and health status after SCI. 5'12 Individuals who were single, had chronic pain, severe spasticity, or bladder function problems scored lower on the mental Arch Phys Med Rehabil Vol 79, November 1998
1436
Q U A L I T Y OF LIFE A N D T R A U M A T I C SCI, Westgren
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QUALITY OF LIFE AND TRAUMATIC SCI, Westgren -
-
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lO PF
RP
BP
GH
VT
SF
RE
MH
Fig 1. QL in neurologic subgroups according to the SF-36 profile: --, normative data; --O--, complete tetraplegia; --O--, incomplete tetraplegia; --©--, complete paraplegia; --Q--, incomplete paraplegia. PF, physical functioning; RP, role function, physical; BP, bodily pain; GH, general health; VT, vitality; SF, social function; RE, role function, emotional; MH, mental health.
health subscale. This subscale includes indicators for depressive symptoms as well as psychological distress. Our findings are in accord with other reports 29,3° in this regard. Employment has been considered important for good QL. 5,6 This is corroborated by the findings of this study. However, this variable is strongly influenced by economic and social opportunities, as well as being related to age. When evaluating these results one should consider the Swedish welfare system. This system includes pensions and economical support for the unemployed, allowing nonworking individuals a relatively high standard of living. Despite this, the present study indicates significant differences in QL between employed and unemployed individuals, pointing to the psychosocial value of work. Medical problems related to SCI and their associations to QL have not been studied in a structured manner previously. Chronic neurogenic pain had a strong negative association with QL, as did severe spasticity and urologic problems. The importance of pain control for a good QL has been reported by others. 8,27 In a previous report by US, 16 about two thirds of the SSCIS population reported problematic neurogenic pain. The lack of effective treatment makes neurogenic pain one of the major challenges of SCI medicine. Treatment of problematic 100
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.
.
spasticity is likewise a complex and demanding field. Management of urologic problems has improved, but such problems are still at times socially devastating. The increasing number of available treatment methods makes individual considerations easier. Attention has lately been drawn to the impact on QL of neurogenic bowel problems as a result of SCI. 31,32The extent of the problem, however, is still largely unknown and needs to be further recognized. There is a risk that the importance of problems such as pain, spasticity, and incontinence may be underestimated because they do not necessarily correspond to objective changes in organ function, making the individual handicap hard to evaluate. SCI and its negative impact on sexual function and activity has been a topic much discussed during the last decade. The impairment of male sexual ability and fertility was the initial focus. 33 More recently, women's sexual problems have been elucidatedY The effect of disability on sexuality is indeed a complex matter and cannot be adequately explained by singling out a solitary factor. Some individuals may perhaps choose to live asexually as an adequate coping strategy. Additionally, sexual activity often is rigidly defined as intercourse, neglecting the possibility of other satisfying sexual activities and thereby falsely concluding that a large proportion of the SCI population is not sexually active. The results of questionnaires dealing with sexual matters are at risk of misinterpretation because of the complex matter of the topic. Studies using qualitative analyses might be a more appropriate method for investigation. The rehabilitative resources offered by the Swedish health care system, including financial support for housing, workplace, and car adaptation and free assistive devices (wheelchairs, etc), as well as medical care and subsidized medication, allows the individual to be part of society as a whole. Thus, there are mechanisms to compensate for certain losses posed on the individual by the physical impairment. However, the medical consequences of the SCI as such cannot be fully compensated for and may therefore limit QL. The extent of the injury obviously influences the degree of impairment and disability in the everyday life of an individual living with a SCI. It appears, however, to be of subordinate importance to QL. By contrast, the medical problems associated with SCI seem clearly to affect QL negatively. Neurogenic pain, problematic spasticity, and bladder function problems were all associated with a lower QL. The importance of a thorough analysis of optimal treatment, should a problem occur, must therefore be emphasized. QL is partly a reflection of the individual's ability to cope and adapt to his or her new life situation. This time-consuming process is initiated shortly after injury, As the time for inpatient rehabilitation gets shorter by the year, much of this processing has to take place after discharge from hospital. It is reasonable to believe that this process would benefit from more structured implementation of psychological treatment modalities, thereby enhancing the process of coping.
.
...... References
30 PF
I RP
BP
GH
VT
SF
RE
MH
Fig 2. QL and time since injury: --, normative data; --©--, 0 to 4yrs; --O--, 5 to 17yrs; --O--, 18 to 44 yrs. PF, physical functioning; RP, role function, physical; BE bodily pain; GH, general health; VT, vitality; SF, social function; RE, role function, emotional; MH, mental health. Arch Phys Med Rehabil Vol 79, November 1998
1. Dennis RE, Williams W, Giangreco ME Cloninger CJ. Quality of life as context for planning and evaluation of services for people with disabilities. Exceptional Children 1993;59:499-512. 2. Svedlund J, Sullivan M, Sj6din B, Liedman B, Lundell I. Quality of life in gastric cancer prior to gastrectomy. Quality of Life Res 1996;5:255-64. 3. J6nsson A, Dock J, Ravnborg MH. Quality of life as a measure of rehabilitation outcome in patients with multiple sclerosis. Acta Neurol Scand 1996;93:229-35.
QUALITY OF LIFE AND TRAUMATIC SCl, Westgren
4. Hammerlid E, Mercke C, Sullivan M, Westin T. A prospective quality of life study of patients with oral or pharyngeal carcinoma treated with external beam irridiation with or without brachytherapy. Oral Oncol 1997;33:189-96. 5. Si6steen A, Lundquist C, Blomstrand C, Sullivan L, Sullivan M. The quality of life of three functional spinal cord injury subgroups in a Swedish community. Paraplegia 1990;28:476-88. 6. DeVivo MJ, Richards JS. Community reintegration and quality of life following spinal cord injury. Paraplegia 1992;30:108-22. 7. Clayton KS, Chubon RA. Factors associated with the quality of life of long-term spinal cord injured persons. Arch Phys Med Rehabil 1994;75:633-8. 8. Stensman R. Adjustment to traumatic spinal cord injury. A longitudinal study of self-reported quality of life. Paraplegia 1994;32:416-22. 9. Evans RL, Hendricks RD, Connis RT, Haselkorn JK, Ries KR, Mennet TE. Quality of life after spinal cord injury: A critique and recta-analysis (1983-1992). J Am Paraplegia Soc 1993; 17:60-6. 10. Pinkerton AC, Griffin ML. Rehabilitation outcomes in females with spinal cord injury: a follow up study. Paraplegia 1983;21:16675. 11. Davis R. Pain and suffering following spinal cord injury. Clin Orthop 1975;112:76-80. 12. Anson CA, Stanwyck DJ, Krause JS. Social support and health status in spinal cord injury. Paraplegia 1993;31:632-8. 13. Brazier JE, Harper R, Jones NMB, O'Cathanian A, Thomas KJ, Usherwood T, et al. Validating the SF-36 health survey questionnaire: new outcome measure for primary care. BMJ 1992;305: 160-4. 14. Jenkinson C, Coulter A, Wright L. Short form 36 (SF36) health survey questionnaire: normative data for adults of working age. BMJ 1993;306:1437-40. 15. Levi R, Hultling C, Nash MS, Seiger/~. The Stockholm spinal cord injury study: 1. Medical problems in a regional SCI population. Paraplegia 1995;33:308-15. 16. Levi R, Hultling C, Seiger ,~. The Stockholm spinal cord injury study. 3. Health~related issues of the Swedish annual level-ofliving survey in SCI subjects and controls. Paraplegia 1995;33:72630. 17. Levi R, Hultling C, Seiger A. The Stockholm spinal cord injury study: 4. Psychosocial and financial issues of the Swedish annual level-of-living survey in SCI subjects and controls. Paraplegia 1996;34:152-57. 18. Sullivan M, Karlsson RA. SF-36 H~isoenk~it,Swedish manual and interpretation guide. Monograph. Gothenburg, Sweden: Health Care Research Unit, Medical Facility, Gothenburg University and Sahlgrenska Hospital; 1994.
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19. Ware JE, Donald Sherbourne C. The Mos 36-items short form health survey. Med Care 1992;30:473-81. 20. McHorney CA, Ware JE, Raczek AE. The Mos 36-item short form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993;31:247-63. 21. McHomey CA, Ware JE, Rachel Lu JE Donald Sherbourne C. The Mos 36-item short-form health survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care 1994;32:40-66. 22. Sullivan M, Karsson J, Ware JE. The Swedish SF-36 health survey-1. Evaluation of data quality, scaling assumptions, reliability and construct validity across general population in Sweden. Soc Sci Med 1995;41:1349-58. 23. Levi R, Hultling C, Westgren N. A computer assisted follow up system for spinal cord injury patients. Paraplegia 1994;32:736-42. 24. Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale (NJ): Lawrence Erlbaum Associates; 1988. 25. Fuhrer M J, Rintala DH, Hart KA, Clearman R, Young ME. Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. Arch Phys Med Rehabil 1992;73:552-7. 26. Eisenberg MG, Saltz CC. Quality of life among aging spinal cord injured persons: long term rehabilitation outcomes. Paraplegia 1991 ;29:514-20. 27. Cushman LA, Hassett J. Spinal cord injury: 10 and 15 years after. Paraplegia 1992;30:690-96. 28. Westgren N, Hultling C, Levi R, Seiger/~, Westgren M. Sexual issues in women after traumatic spinal cord injury. Acta Obstet Gynecol Scand 1997;76:977-83. 29. Fuhrer MJ, Rintala DH, Hart KA, Clearman R, Young ME. Depressive symptomatology in persons with spinal cord injury who reside in the community. Arch Phys Med Rehabi11993;74:25560. 30. Tate D, Forchheimer M, Maynard F, Dijkers M. Predicting depression and physiological distress in persons with spinal cord injury based on indicators of handicap. Am J Phys Med Rehabil 1994;73:175-83. 31. Stiens SA, Bergman S-B, Goetz LL. Neurogenic bowel dysfunction after spinal cord injury: clinical evaluation and rehabilitative management. Arch Phys Med Rehabil 1997;78 (Suppl 1):$86-102. 32. Badiali D, Bracci F, Castellano V, Corrazziari E, Fuoco U, Habib FI, et al. Sequential treatment of chronic constipation in paraplegic patients. Spinal Cord 1997;35:116-20. 33. Brindley GS, Rushton DN. Hypogastric plexus stimulators for obtaining semen from men. Br J Urol 1989;64:72-77.
Arch Phys Med Rehabil Vol 79, November 1998
Quality of Life and Traumatic Spinal Cord Injury Ninni Westgren, CNM, Richard Levi, MD, PhD ABSTRACT. Westgren N, Levi R. Quality of life and traumatic spinal cord injury. Arch Phys Med Rehabil 1998;79: 1433-1439. Objective: To determine associations between major outcome variables after traumatic spinal cord injury (SCI) and quality of life (QL). Subjects: Of a total population of 353 SCI patients, 320 participated, 261 men and 59 women living in the greater Stockholm area: 124 were tetraplegic, 176 were paraplegic, and 20 had no classified level. Mean age was 42 years (range, 17 to 78). Method: The Swedish SF-36 Health Survey was used to assess QL. The SF-36 is a self-administered questionnaire containing 36 items, divided into 8 multi-item dimensions, covering physical function, physical and emotional role function, social function, bodily pain, mental health, vitality and overall evaluation of health. Neurologic, general medical, and psychosocial variables were obtained from the Stockholm Spinal Cord Injury Study (SSCIS) data base. QL indices were analyzed for the SCI group as a whole, as well as for subgroups. Descriptors for subgroups were demographic variables, presence or absence of common medical problems, and subjective evaluation of the degree of impact of the medical problem on well-being/daily activities. Results: QL in individuals with SCI was significantly lower in all subscales as compared with a normative population. No difference in QL was seen in subgroups according to extent of lesion, with the exception of physical functioning. Several medical complications such as neurogenic pain, spasticity, and neurogenic bladder and bowel problems were associated with lower QL scores. Summary: QL, as defined by SF-36, is better in persons injured many years ago, as compared with those recently injured, suggesting an adaptive process operating over a long period. The presence of complicating medical problems, such as severe pain, problematic spasticity, and incontinence, seem to have more negative effects on QL than the extent of SCI as such.
© 1998 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation SSESSMENTS OF quality of life (QL) are increasingly A used in medicine, embracing a wide range of target groups ~4 and populations as a whole. Conceptualizations vary,
Fromthe SpinalisSCIResearchUnitand Departmentof ClinicalNeuroscienceand FamilyMedicine,KarolinskaInstitute,Stockholm,Sweden. Submitted for publicationJanuary 15, 1998. Acceptedin revisedform May 18, 1998. Supportedby grantsfromStiftelsenLarsHiertasMinne,SiSdraSverigesSjuksktiterskehem,SSSH,LundandV:~rdalStiftelsen. No commercialpartyhavinga directfinancialinterestin the resultsof the research supporting this article has or will confer a benefitupon the authors or upon any organizationwithwhichthe authorsare associated. Reprintrequeststo NinniWestgren,CNM,SpinalisSCI ResearchUnit,Norrbacka S1, KarolinskaHospital,SE-17176 Stockholm,Sweden. © 1998 by the AmericanCongressof RehabilitationMedicineand the American Academyof PhysicalMedicineandRehabilitation 0003-9993/98/7911-482153.00/0
but there seems to be agreement on the synthesis of objective and subjective dimensions of QL, including personal values and aspirations. A widening range of treatment opportunities creates a need for evaluation of outcomes with respect to the impact on QL. In addition, as financial resources are limited, costeffective management demands quality assurance and monitoring of outcomes of rehabilitative procedures. One group that has been studied with regard to QL is that of individuals surviving spinal cord injury (SCI). 5-9 Medical management of SCI is designed first to save lives and second to minimize the consequences of the trauma, thereby optimizing the conditions for long-term survival with a good QL. With improved medical care the number of SCI survivors grows, thus making the need for better knowledge and understanding with regard to subsequent disability and handicap more apparent. Previous studies on SCI and QL have varied considerably with respect to method as well as analysis. Selected hospital groups have often been surveyed by mailed assessment packages, resulting in biased samples and low response rates. A commonly used method is a compiled survey with an overview of issues 10,11 or the opposite, focusing on a single issue, eg, social support and QL. 5,12In addition, insufficient consideration has sometimes been given to the heterogeneity in an SCI population with respect to medical and neurologic status. This study was done to assess QL in a true prevalence population by using a well-documented instrument that has been used for other target groups 13 as well as for general populations, 14 thereby allowing comparisons to be made. This study is part of the Stockholm Spinal Cord Injury Study (SSCIS), in which a regional prevalence population is evaluated with regard to medical, psychosocial, and economic outcome variables. 15~7 By the design of SSCIS it is thus possible to gain insight into the association between clinical patient descriptors and QL. The specific aim of this study was to identify associations between variables of empirical clinical importance and QL in a nonselected SCI population. SUBJECTS AND M E T H O D S The SSCIS 15"17 is a comprehensive survey of subjects with
traumatic SCI, constituting 93% of the regional prevalence population in the greater Stockholm area. All 353 subjects in the SSCIS were invited to participate in the present study and 320 accepted. The group comprised 261 men and 59 women; 124 individuals were tetraplegic, 176 were paraplegic, and 20 had no classified level. The mean age was 42 years (range, 17 to 78). The Swedish SF-36 Health Survey was used to assess QL. Is The SF-36 is a self-administered questionnaire containing 36 items. It measures health in eight multi-item dimensions, covering functional status, well-being, and overall evaluation of health (table 1). For each dimension, item scores are coded, summed, and transformed onto a scale from 0 to 100, on which 0 indicates worst health and 100 best health. 13,14,19-21 The Swedish version of the SF-36 has been translated and validated against a norm group by Sullivan and colleagues. 22 Their norm group was comprised of 8,930 individuals with a gender distribution of 48.6% men and a mean age of 42 years. The Swedish SF-36 Health Survey was produced within the frameArch Phys Med Rehabil Vol 79, November 1998
1434
QUALITY OF LIFE AND TRAUMATIC SCI, Westgren Table 1: The SF-36 Subscales and Descriptive Statistics for the SCI Group (n = 320) in Comparison With Swedish Normative Data (n = 8,930)
Low Scores Indicate
Subscale Function Physical functioning Role function, physical Role function, emotional Social functioning Bodily pain Well-being Mental health Vitality General health
Label
Limitations in physical activities Problems with work/daily activities as a result of physical health Problems with work/daily activities as a result of emotional problems Interference with normal social activities due to physical/emotional problems Limiting pain Feelings of nervousness and depression Feelings of fatigue Feelings of poor health, likely to get worse
n~tern
SCI Group
Normative Group
M
SD
M
SD
t
p
ES
PF RP
10 4
42.5 57.2
31.6 42.6
87.9 83.2
19.6 31.8
-39.6 14.2
.001 .001
2.31 .82
RE
3
70.4
40.4
85.7
29.2
-9.1
.001
.52
SF
2
76.7
26.4
88.6
20.3
-10.2
.001
.59
BP
2
57.2
28.5
74.8
26.1
-11.7
.001
.67
MH VT GH
5 4 5
74.8 61.4 63.9
20.4 23.0 23.8
80.9 68.8 75.8
18.9 22.8 22.0
-5.7 5.7 9.5
.001 .001 .001
.32 .33 .54
* Number of items included in the subscale.
work of the International Quality of Life Assessment (IQOLA) Project to match the original version. 14'15,E9-21 Neurologic, general medical, and psychosocial variables were obtained from the SSCIS database. The SSCIS protocol and the method of data collection has been published previously. 23 QL indices were analyzed for the SCI group as a whole, as well as for subgroups. Descriptors for subgroups were based on demographic and injury data (age, age at injury, time since injury, extent of injury, gender), criteria for presence or absence of common medical problems related to the SCI, and evaluations by the patient regarding the impact of the medical problems on well-being/daily life. The subgroups were thus defined by variables that are commonly used in clinical practice to describe individuals with SCI. The medical problems were operationally defined as follows: • Neurogenic pain Definition: Pain of a burning, stabbing, or sharp-shooting quality segmentally at or diffusely below the neurologic level of lesion for at least the 2 previous weeks or for at least four 2-week periods during the past year. Criteria: Classified according to the definition by the neurologist after eliciting a detailed pain history. Patient evaluation: The pain, according to the definition, has a moderate to strong influence on well-being/daily life. • Pressure sores Definition: Skin lesions caused by pressure and resulting in skin breakdown and requiring treatment. Criteria: A sore, according to the definition, treated during the previous year, as documented by medical record/ history and/or present at examination. Patient evaluation: A pressure sore, according to the definition, has a moderate to strong influence on wellbeing/daily life. • Spasticity Definition: A syndrome associated with upper motor neuron lesions, including one or more of the following: a velocity-dependent increase of tonic stretch reflexes, increased tendon reflexes, or other release phenomena such as increased flexor reflexes/flexor spasms. Criteria: The presence of spasticity, according to the definition, at the time of examination. Patient evaluation: Spasticity, according to the definition, has moderate to strong influence on well-being/daily life. Arch Phys Med Rehabil Vol 79, November 1998
• Bladder function problems
Definition: Disturbance of urologic function, secondary to SCI, leading to incontinence, recurrent urinary tract infections, or both. Criteria: Presence of symptoms, according to the definition, documented by medical records/history. Patient evaluation: A urologic problem, according to the definition, has a moderate to strong influence on wellbeing/daily life. • Bowel function problems Definition: Disturbance of bowel function, secondary to SCI, leading to constipation and/or incontinence. Criteria: Constipation and/or fecal incontinence, according to the definition, documented by medical records/ history. Patient evaluation: A bowel problem, according to the definition, has a moderate to strong influence on wellbeing/daily life. • Sexual dysfunction Definition: Impairment of sexual function secondary to SCI, leading to, eg, impotence, anejaculaton, anorgasmia, and/or positioning problems in men, and, eg, diminished vaginal lubrication, anorgasmia, and/or positioning problems in women. Criteria: Sexual dysfunction, according to the definition, documented by medical records/history. Patient evaluation: Sexual dysfunction, according to the definition, has a moderate to strong influence on wellbeing/daily life.
Data Analysis The association between clinical and demographic variables and QL ratings were tested using the t test, comparing the levels of QL in subjects with and without the given characteristic or symptom. A two-tailed t test of significance was used. An estimate of the magnitude of mean differences was also computed along each t test. This effect size (ES) is calculated as the difference between the two means divided by the standard deviation (SD) of either group. In this study, the SD corresponding to the comparison group (ie, the group without the given characteristic), was used to calculate the ES. Interpretation of ES was based on Cohen's 24 definition of three levels of ES for use when testing differences between means. The levels given
QUALITY OF LIFE AND TRAUMATIC SCI, Westgren
by Cohen are .20, .50, and .80, corresponding to small, medium, and large effects, respectively. The p values for each t test, as well as the corresponding ES for each comparison, are given in tables 1 through 3. The risk of making either a type I or a type II error asked for a reasonable level for accepting a result as both statistically and clinically significant. The actual p values are given with the calculated ES, whereby the reader has the possibility to make his or her own correctional levels. Firstly, a correction of the p values was done, dividing .05 with the number of SF-36 scales, resulting in a new significance level approximating .006. Secondly, a series of power analyses were computed to define the power corresponding to Cohen's suggested ES levels. With a medium effect chosen as the critical ES level, the power analysis yielded a power above .80 in all comparisons but two (gender, power = .76; and pressure sores, power = .35). Thus, calculating with .006 as the critical significance level, we accept that we have only power to detect effects above .50.
RESULTS The SCI group scored significantly lower than the normative group on all subscales (table 1). The difference in QL was large in the subscales physical function and physical role function, where the ES exceeded 0.8. Medium effect was seen in all other subscales except mental health and vitality, where the ES was small. Differences in levels and completeness of lesion was not reflected in QL scores, with the exception of a lower score in the physical function subscale with more extensive neurologic deficits (fig 1, table 2). Age at injury made a difference when evaluating QL. A comparison between age groups of those 20 years and younger and those older than 20 years at injury showed that younger persons scored highest with respect to physical function, physical role function, bodily pain, and social function (table 2). QL scores were higher in subgroups with longer time since injury (fig 2). This was illustrated by significantly lower scores on both physical and emotional role function as well as social function in the group who had been injured 0 to 4 years than the group injured 18 to 44 years. The latter group came close to the norm in the subscales physical function, bodily pain, general health, vitality, and mental health. The remaining subscales showed no significant differences between groups (table 2). Gender difference was seen in vitality, where women scored lower than men (table 2). When evaluating the impact of marital status on QL, single persons scored significantly lower on vitality and emotional role function as compared with the married/cohabitating group (table 2). No difference in QL was found between the full-time employed SCI group and the normative group. In contrast, significantly lower scores were found in all eight subscales among those working less than full time or who were not employed (table 2). Among individuals with medical problems, neurogenic pain, problematic sp~ticity, and bladder problems were associated with lower QL. ES was large for neurogenic pain on the subscale bodily pain and medium on general health. Of the studied medical problems, neurogenic pain was the most pronounced denominator of low QL. Bladder problems had a medium ES on QL in the subscale general health, whereas problematic spasticity affected all subscales except bodily pain and general health with a medium ES (table 3). The presence of pressure sores was associated with a lower QL in the physical function and social function subscales (table 3). Problems with bowel function were associated with a lower QL in all subscales but the physical role function (table 3). Sexual dysfunction was
1435
associated with a lower QL in the subscales general health and social function (table 3). DISCUSSION The present study is the first survey of QL in a near-total regional population of SCI subjects using a well-documented instrument. A further advantage was a high response rate (91%). The main purpose of the study was to compare QL between SCI subgroups. This was possible because of the availability of detailed data with regard to demographic and medical descriptors. The study lacks a matched control group in some important aspects. Any comparison between the SCI population and the norm group should thus be made with caution. However, the comparison gives a general perspective on QL after SCI. Associations found between different variables and lower QL scores do not necessarily reflect causal relationships. The SF-36 has been validated and found to be a feasible tool for assessment of QL in the general population 14,15,19,2°as well as in different patient groups. 21,22It is considered important that a health survey is sensitive and comprehensive to the full range of illness and therefore tools designed for a particular disease are of less value because an individual may have other health problems than those connected with the injury or disease studied. QL after SCI is lower in all studied variables than in able-bodied individuals of the same age. An impaired QL is in accord with some previous studies in SCI subjects. 7,25 Interestingly, the explanations for a decreased QL in SCI subjects put forward by different authors vary considerably. Within our SCI study population, no difference in QL was seen when comparing the subgroups incomplete paraplegia, complete paraplegia, incomplete tetraplegia, and complete tetraplegia, except for physical function. Several reports point to the subordinate importance of extent of injury and perceived QL. 6'25-27 Clayton and Chubon's study 7 contradicts these findings. A recent meta-analysis of 32 reports from 1983 to 1992 suggested that the severity of the injury correlates negatively with QL, but concluded that due to limited rigor of research design and poor validity of measurements definitive conclusions could not be drawn from these studies. 9 Higher age at injury has a negative impact on recovery. Stensman s reported that age older than 35 years at the time of injury was associated with a reduced capacity to cope with the injury as assessed by QL evaluations. The aging of the body and the mind and the gradual loss of vitality puts limits and requires both medical and social assistance to a large extent. Gender difference is currently gaining more attention in medicine. In this study women scored lower than men with respect to vitality. We have previously shown that a larger proportion of women in an SCI population report medical, social, and psychological problems than men. ~6 Women with SCI are also overrepresented in the group suffering from psychiatric ill health. 28 This was not reflected, however, in their QL scores as measured by SF-36. The adaptive process seems to operate over a long time, as is suggested by higher QL scores in subgroups having lived longer with their injury, despite the fact that with increasing time after injury, the cumulated percentage of most complications increases successively. 16 Our study is at variance with that of Cushman and HassettY who reported no difference in QL with regard to time since injury. Being married or cohabitating may have a positive effect on vitality and emotional role. This is in agreement with previous articles on social support and health status after SCI. 5'12 Individuals who were single, had chronic pain, severe spasticity, or bladder function problems scored lower on the mental Arch Phys Med Rehabil Vol 79, November 1998
1436
Q U A L I T Y OF LIFE A N D T R A U M A T I C SCI, Westgren
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QUALITY OF LIFE AND TRAUMATIC SCI, Westgren -
-
-
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lO PF
RP
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Fig 1. QL in neurologic subgroups according to the SF-36 profile: --, normative data; --O--, complete tetraplegia; --O--, incomplete tetraplegia; --©--, complete paraplegia; --Q--, incomplete paraplegia. PF, physical functioning; RP, role function, physical; BP, bodily pain; GH, general health; VT, vitality; SF, social function; RE, role function, emotional; MH, mental health.
health subscale. This subscale includes indicators for depressive symptoms as well as psychological distress. Our findings are in accord with other reports 29,3° in this regard. Employment has been considered important for good QL. 5,6 This is corroborated by the findings of this study. However, this variable is strongly influenced by economic and social opportunities, as well as being related to age. When evaluating these results one should consider the Swedish welfare system. This system includes pensions and economical support for the unemployed, allowing nonworking individuals a relatively high standard of living. Despite this, the present study indicates significant differences in QL between employed and unemployed individuals, pointing to the psychosocial value of work. Medical problems related to SCI and their associations to QL have not been studied in a structured manner previously. Chronic neurogenic pain had a strong negative association with QL, as did severe spasticity and urologic problems. The importance of pain control for a good QL has been reported by others. 8,27 In a previous report by US, 16 about two thirds of the SSCIS population reported problematic neurogenic pain. The lack of effective treatment makes neurogenic pain one of the major challenges of SCI medicine. Treatment of problematic 100
. . . . . . . . . . . . . . . . . . . .
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50
.
.
.
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spasticity is likewise a complex and demanding field. Management of urologic problems has improved, but such problems are still at times socially devastating. The increasing number of available treatment methods makes individual considerations easier. Attention has lately been drawn to the impact on QL of neurogenic bowel problems as a result of SCI. 31,32The extent of the problem, however, is still largely unknown and needs to be further recognized. There is a risk that the importance of problems such as pain, spasticity, and incontinence may be underestimated because they do not necessarily correspond to objective changes in organ function, making the individual handicap hard to evaluate. SCI and its negative impact on sexual function and activity has been a topic much discussed during the last decade. The impairment of male sexual ability and fertility was the initial focus. 33 More recently, women's sexual problems have been elucidatedY The effect of disability on sexuality is indeed a complex matter and cannot be adequately explained by singling out a solitary factor. Some individuals may perhaps choose to live asexually as an adequate coping strategy. Additionally, sexual activity often is rigidly defined as intercourse, neglecting the possibility of other satisfying sexual activities and thereby falsely concluding that a large proportion of the SCI population is not sexually active. The results of questionnaires dealing with sexual matters are at risk of misinterpretation because of the complex matter of the topic. Studies using qualitative analyses might be a more appropriate method for investigation. The rehabilitative resources offered by the Swedish health care system, including financial support for housing, workplace, and car adaptation and free assistive devices (wheelchairs, etc), as well as medical care and subsidized medication, allows the individual to be part of society as a whole. Thus, there are mechanisms to compensate for certain losses posed on the individual by the physical impairment. However, the medical consequences of the SCI as such cannot be fully compensated for and may therefore limit QL. The extent of the injury obviously influences the degree of impairment and disability in the everyday life of an individual living with a SCI. It appears, however, to be of subordinate importance to QL. By contrast, the medical problems associated with SCI seem clearly to affect QL negatively. Neurogenic pain, problematic spasticity, and bladder function problems were all associated with a lower QL. The importance of a thorough analysis of optimal treatment, should a problem occur, must therefore be emphasized. QL is partly a reflection of the individual's ability to cope and adapt to his or her new life situation. This time-consuming process is initiated shortly after injury, As the time for inpatient rehabilitation gets shorter by the year, much of this processing has to take place after discharge from hospital. It is reasonable to believe that this process would benefit from more structured implementation of psychological treatment modalities, thereby enhancing the process of coping.
.
...... References
30 PF
I RP
BP
GH
VT
SF
RE
MH
Fig 2. QL and time since injury: --, normative data; --©--, 0 to 4yrs; --O--, 5 to 17yrs; --O--, 18 to 44 yrs. PF, physical functioning; RP, role function, physical; BE bodily pain; GH, general health; VT, vitality; SF, social function; RE, role function, emotional; MH, mental health. Arch Phys Med Rehabil Vol 79, November 1998
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19. Ware JE, Donald Sherbourne C. The Mos 36-items short form health survey. Med Care 1992;30:473-81. 20. McHorney CA, Ware JE, Raczek AE. The Mos 36-item short form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993;31:247-63. 21. McHomey CA, Ware JE, Rachel Lu JE Donald Sherbourne C. The Mos 36-item short-form health survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care 1994;32:40-66. 22. Sullivan M, Karsson J, Ware JE. The Swedish SF-36 health survey-1. Evaluation of data quality, scaling assumptions, reliability and construct validity across general population in Sweden. Soc Sci Med 1995;41:1349-58. 23. Levi R, Hultling C, Westgren N. A computer assisted follow up system for spinal cord injury patients. Paraplegia 1994;32:736-42. 24. Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale (NJ): Lawrence Erlbaum Associates; 1988. 25. Fuhrer M J, Rintala DH, Hart KA, Clearman R, Young ME. Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. Arch Phys Med Rehabil 1992;73:552-7. 26. Eisenberg MG, Saltz CC. Quality of life among aging spinal cord injured persons: long term rehabilitation outcomes. Paraplegia 1991 ;29:514-20. 27. Cushman LA, Hassett J. Spinal cord injury: 10 and 15 years after. Paraplegia 1992;30:690-96. 28. Westgren N, Hultling C, Levi R, Seiger/~, Westgren M. Sexual issues in women after traumatic spinal cord injury. Acta Obstet Gynecol Scand 1997;76:977-83. 29. Fuhrer MJ, Rintala DH, Hart KA, Clearman R, Young ME. Depressive symptomatology in persons with spinal cord injury who reside in the community. Arch Phys Med Rehabi11993;74:25560. 30. Tate D, Forchheimer M, Maynard F, Dijkers M. Predicting depression and physiological distress in persons with spinal cord injury based on indicators of handicap. Am J Phys Med Rehabil 1994;73:175-83. 31. Stiens SA, Bergman S-B, Goetz LL. Neurogenic bowel dysfunction after spinal cord injury: clinical evaluation and rehabilitative management. Arch Phys Med Rehabil 1997;78 (Suppl 1):$86-102. 32. Badiali D, Bracci F, Castellano V, Corrazziari E, Fuoco U, Habib FI, et al. Sequential treatment of chronic constipation in paraplegic patients. Spinal Cord 1997;35:116-20. 33. Brindley GS, Rushton DN. Hypogastric plexus stimulators for obtaining semen from men. Br J Urol 1989;64:72-77.
Arch Phys Med Rehabil Vol 79, November 1998