Journal of Rehabilitation Research and Development
Vol. 39 No. 1, January/February 2002
A database of self-reported secondary medical problems among VA spinal cord injury patients: Its role in clinical care and management
James S. Walter, PhD; Jerome Sacks, PhD; Raslan Othman, MS; Alexander Z. Rankin; Bernard Nemchausky, MD; Rani Chintam, MD; John S. Wheeler, MD
Abstract: An interactive data management (IDM) system for the Spinal Cord Injury (SCI) Service was developed to collect self-reported patient data related to secondary medical complications and to provide feedback to the SCI rehabilitation team. The long-term objective is to improve clinical care through a process of staff review of current rehabilitation programs in the areas of prevalence, prevention, and management. Based on data from the first 99 SCI patients visiting the clinic and hospital after the installation of the IDM system, SCI patients reported high rates of current problems with spasticity (53 percent), pain (44 percent), and pressure ulcers (38 percent). Respiratory (12 percent) and bowel (14 percent) problems were less common current problems. The SCI staff questioned the reportedly high spasticity rates. They thought that the patients' answers might have indicated simply the occurrence of spasticity, rather than the more important issue of severe spasticity that interferes with daily activities. The staff suggested several additional spasticity questions to add to the study. In other areas, only a small percentage of patients wanted to talk with a therapist about prevention of pressure ulcers. Patients who had urinary problems consistently reported five urinary signs (e.g., cloudy urine). The clinical staff found these data informative and stated that they should continue to be collected.
Key words: pain, pressure ulcers, spasticity, spinal cord injury, urinary tract infections.
This material is based on work supported by Veterans Administration, Rehabilitation Research and Development Service and a grant from Pharmacia and UpJohn, Inc.
Address all correspondence and requests for reprints to James S. Walter, PhD, Hines VA Hospital (151), Research, Hines, Illinois, 60141; email:firstname.lastname@example.org.
The spinal cord injury (SCI) rehabilitation team needs feedback on the effectiveness of their therapeutic interventions and programs (1-6). In the Veterans Administration (VA), SCI care involves a large proportion of aging and long-term patients where rehabilitation of secondary medical complications is the primary endeavor. For these individuals, pressure ulcers are the primary reasons for hospital admissions, followed by urinary tract infections (4,7,8). Other secondary medical complications include pain, spasticity, bowel problems, bladder problems, respiratory complications, obesity, and diabetes (2-5).
The Agency for Health Care Policy and Research (AHCPR) has developed clinical practice guidelines for the treatment of pressure ulcers (9). Evidence-based rehabilitation practices have also been developed for the management and prevention of other secondary complications (see the National Guideline Clearing House (www.guideline.gov) and the American Paraplegia Society) (10). However, SCI VA services do not collect their own patient data to judge the effectiveness of guidelines. Furthermore, practices for this long-term and aging SCI VA population may need to be modified to meet special needs. Such modifications need a patient database for assessment and evaluation of programs.
Large databases have been developed to evaluate clinical and rehabilitation practices (1-6), and several are directed at SCI rehabilitation. The Model Spinal Cord Injury Systems comprise a national registry that tracks the prevalence of SCI, SCI secondary complications, and functional outcome (2,3). The National VA Spinal Cord Dysfunction (SCD) Registry is a local and national registry for VA SCI rehabilitation parameters (11). The VA Veterans Health Information Systems and Technology Architecture (VISTA) can provide health summaries for each VA patient. However, these systems were not designed to track and report outcomes of the many factors in a rehabilitation program that are associated with secondary medical complications. A small local database is a promising tool to investigate new or local problems. Such a system can be easily modified to respond to medical service needs.
A new clinical database in the Hines VA SCI Service was designed for tracking and providing timely feedback to staff about the many issues associated with long-term secondary medical complications (4-6). This database uses an interactive data management (IDM) system that was developed by the Hines VA Hospital Cooperative Studies Program Coordinating Center for interactive data entry in multicenter clinical trials (12). This paper presents summaries, prepared for review by SCI staff, of the problems that their patients reported most frequently and of related activities conducted at home, such as prevention and rehabilitation activities.
This study was conducted at Hines VA Hospital SCI Service. This is a large VA facility in the Chicago metropolitan area. Veterans using this facility come from Illinois, Eastern Wisconsin, Iowa, Western Indiana, and Michigan. This Service functions as an interdisciplinary treatment team that provides a wide range of treatment options in multiple settings, including inpatient hospital wards, an outpatient clinic, a home-care program, and a residential facility. Most patients are over the age of 50 and have had injuries for more than 10 y (5,6).
A new database was installed in the Hines VA SCI Service (4-6). This IDM uses screen entries that are organized by study forms and includes patient reports, medical records, and physician reports (12). To date, only patient report forms have been used. Patients who were being treated in the SCI outpatient clinic or who were hospitalized in one of the two SCI wards were invited to participate in a structured interview that used the staff-developed questions (4-6). Answers were entered directly into the IDM system by the interviewer. None of the patients declined to enter the study.
All questions were asked during initial entry into the study and only initial enrollment data are presented here. The questionnaire focused on patient self-reported medical problems, prevention activities practiced at home, and satisfaction with medical service. This report examines the most frequently reported problems: spasticity, pain, pressure ulcers, bladder problems, bowel problems, and respiratory problems. Associations between factors and the report of a secondary medical problem were assessed for statistical significance by Chi-square tests ( p < 0.05).
Table 1 presents the current prevalence of nine secondary complications for the 99 patients enrolled. Patients responded to a series of questions asking "Are you having a current problem with (1) pressure ulcers, (2) spasticity, (3) pain, etc.," with the responses of "yes/no." The most common secondary complication reported was spasticity (53 percent).
Current prevalence of secondary medical problems perceived by SCI patients (n = 99).
Presented in Table 2 are the related symptoms for patients with current spasticity (n = 52) or pain (n = 42). Spasticity manifests itself primarily in the lower legs. Medications and limb movements are used for spasticity management in most patients, and nearly all of the patients were either satisfied or very satisfied with their management of spasticity. Pain manifests itself primarily below the level of the injury and in multiple locations. Nearly half the patients reported severe pain and pain that interfered with daily activity. However, a large majority were somewhat or very satisfied with their pain management program. A majority of patients used pain medication, range of motion exercises, bed rest, and daily activity to manage pain.
Specific complications in patients reporting current spasticity or pain.
Related symptoms for patients with current pressure ulcers (n = 38), bladder (n = 22), bowel (n = 14), or respiratory problems (n = 12) are shown in Table 3 . Pressure ulcers occurred primarily in the sacral, ischial, and trochanter areas. A large majority of patients were satisfied with their ulcer prevention program, and few wanted to see a therapist to help prevent pressure ulcers. Bladder problems commonly involved urinary tract infection (UTI) and incontinence. Patients with bowel problems commonly reported problems of hard stool, the bowel program taking too long, and impaction. Shortness of breath is the most common respiratory problem symptom. Approximately half those with respiratory problems were using respiratory inhalants prescribed by their doctor.
Specific complications in patients reporting current pressure ulcers, bladder problems, or respiratory problems.
Table 4 examines the association between patient characteristics or preventive practices and the presence of pressure ulcers. The rate of self-report of large abdominal girth among patients with pressure ulcers is more than four times the rate for those without ulcers. Activities to prevent pressure ulcers were grouped into wheelchair or bed practices. Programs to relieve pressure ulcers in the wheelchair included periodic raising of the bottom or leaning from side-to-side. Raising the body and leaning were done by a majority of the patients. However, these activities were as frequent for patients with current pressure ulcers as in patients with no current ulcers. Patient hygiene practices were also common in those with and without current ulcer problems. Associations between patient characteristics or preventive practices and current bladder problems are examined in Table 5 . The rates of the five specific urological problems (cloudy urine, etc.) were consistently much higher among patients with current bladder problems, and the differences are statistically significant. Patients with and without current bladder problems had similar rates of general urological preventive activities. No single catheterization method was associated with the presence or absence of bladder complaints. Patients often used more than one method, as the four methods shown add to more than 100 percent. Additional comparisons (data not shown) showed that 12 (50 percent) of the 24 patients who used Foley catheters changed them more than once each month, 19 (83 percent) of the 23 patients on intermittent catheterization had catheterizations spaced at least 4 h apart and 43 percent used sterile catheters, and 40 (65 percent) of the 62 patients who used external (condom) catheters changed their condoms daily.
Association between patient characteristics or preventive practices and current pressure ulcer problems.
Association between patient characteristics or preventive practices and reported current bladder problems.
Patient characteristics and associations with current bowel problems are shown in Table 6 . Individuals with a bowel problem used suppositories more frequently. All other elements of the bowel program were of comparable frequency in patients with or without bowel problems. Less than 40 percent of the patients reported using laxatives, stool softeners, or enemas. In addition, these items were as likely to be used by those with bowel problems as without problems.
Association between patient characteristics or preventive practices and reported bowel problems.
Table 7 depicts associations between patient characteristics and preventive practices and current respiratory problems. The frequency of large abdominal girth among patients with current respiratory problems is five times greater than the frequency for patients without current respiratory problems. The majority of patients conducted activities to prevent respiratory problems. Patients without current respiratory problems were more likely to drink two or three quarts of water daily than patients reporting a respiratory problem, with a statistically significant difference. Exercises, such as deep breathing, quad cough, incentive spirometry, and inspiratory resistance were done infrequently.
Association between patient characteristics or preventive practices and current respiratory problems.
The summaries presented in this report demonstrate the role of a local system in collecting patient data for clinical assessment. This preliminary survey of secondary complications, based on patient self-assessment during an interview, indicated that spasticity, pain, and pressure ulcers were common problems of SCI patients. The survey also showed that follow-up questions can clarify the many issues associated with secondary complications such as the severity of problems, associated risk factors, the need for further interventions, and the patient's desire for further treatment. Verification of patient-reported symptoms is needed, including clinical tests and signs, as part of standard clinical practice. However, the SCI Service team felt that reported patient perceptions provided important information about their rehabilitation programs and that patient-reported data should continue to be collected.
Although spasticity is a well-known problem for individuals with SCI (13-17), the clinical staff was surprised by the high rate of spasticity problems reported to the independent interviewer in this study. The staff was particularly concerned that patients may have reported simply the presence of spasticity rather than a problem with spasticity. The specific information that was desired pertained to spasticity that interferes with daily activities.
The clinical staff pointed out that new interventions are being used for spasticity that should increase patient satisfaction in this important area. Tizanidine, an alpha-2 agonist and antispasticity medication, has an improved side-effect profile (18). Botulinum toxin, a muscle paralyzing agent, is injected into spastic muscles with little or no side effects (19). We recently reported that improvement in spasticity with regular standing in mobile standing devices (20,21) and that dorsal flexion of the foot while standing may further inhibit spasticity (22). In this report, a significant number of patients had standing equipment and were using it. However, the beneficial effects of new medications or regular home standing will need to be clarified with future observation
The clinical staff discusses pain issues with every patient at every clinic visit, and all pain problems are treated. Common pain management methods include medication and decreased use of arms. The clinical staff suggested additional follow-up questions to assess further patient needs in this important area:
Pressure ulcers are a common secondary medical problem for individuals with SCI (16,23,24). For this survey, the clinical staff was impressed and pleased by the high percentage of patients reporting active prevention activities, such as pressure relief every hour or less while sitting, to cope with sacral and ischial pressure ulcers. Nearly all patients reported conducting important prevention activities such as observing their skin and conducting increased pressure relief for red areas. However, the staff thought more information on prevention activities of patients was needed and wished to add three questions to the database:
The staff was concerned that further changes in prevention activities would not be easily introduced because, based on the current responses, most patients were satisfied with their current pressure relief program and very few patients wanted to see a therapist to help prevent ulcers.
In this report, large abdominal girth was associated with pressure ulcers and respiratory problems. Patient-reported abdominal girth has limitations based on perceptions of what is normal. This measure needs to be verified with direct measures of abdominal girth and percent body fat and will be added in the future. However, obesity is a well-known risk factor for many secondary complications of SCI, including cardiovascular problems, diabetes, and pressure ulcers. In addition, obesity has been associated with the sedentary lifestyles that these individuals often exhibit (14,16,24-26). Thus, lifestyle activities related to nutrition and physical exercise are accepted as an important part of SCI rehabilitation (13,25,26). Exercise programs for the home environment can have low associated costs. For example, use of 5- to 15-lb dumbbells and videotapes for wheelchair exercises can be fun for the individual and introduced easily into the home environment.
Urine characteristics such as cloudy, foul smelling, or blood in the urine were highly associated markers for urinary problems and have been reported elsewhere (15,27-29). Closer tracking of these markers in the clinic as well as with patient-reported opinions could result in earlier assessment and management. In this survey, those with bowel problems were concerned with constipation, impaction, and extended time to conduct bowel programs. Surprisingly, few patients with current bowel problems reported using laxatives or stool softeners. The clinical staff thought that a higher percentage of patients were actually prescribed these medications and that patients should be urged to use laxatives and stool softeners more frequently for constipation-related problems, along with other therapies. In our recent survey of SCI patients using standing devices, patients with at least 0.5 h of daily standing reported improved bowel function (20,21). More questions related to the benefits of medication and standing for bowel function are proposed for continuations of this survey.
The Hines SCI database has been designed to track current and longitudinal clinical data for patients with SCI. This report provided SCI staff with a summary of the problems and activities of their current patients and of how they are doing at home, related to their prevention and rehabilitation programs. As patients return for clinic visits, more longitudinal data can be collected that can serve as outcome data for the therapeutic programs that the VA SCI Service uses. In addition, as funding becomes available, clinical tests and signs will be added to the database to provide authentication of patient-reported symptoms. Outcome measures will keep the SCI staff informed about the most pressing problems and which rehabilitation programs are efficacious. The current small sample size has limitations that will be addressed by the enrollment of additional patients. However, the use of a flexible local database allows the clinic to add new questions to the database and to discard older questions that are no longer relevant. This is the kind of information system that an active rehabilitation program needs for assessment and revision of clinical practice.
Francis Weaver, PhD, Research Chair of the SCI Quality Enhancement Research Initiative (QUERI), Veterans Administration, and Yvonne Lucero, MD, Associated Director of the SCI Service, Hines VA Hospital, for review of this manuscript. The authors also acknowledge the contributions of the Hines VA SCI Service physicians.
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Last revised March 12, 2002; comments, problems, etc., to WM.