A descriptive study of secondary conditions reported by a population of adults with physical disabilities served by three independent living centers in a rural state.

Individuals with disabilities may be at an increased risk for a number of preventable health problems. These have recently come to be referred to as secondary conditions (Marge, 1988; Pope & Tarlov, 1991) and are receiving significant attention from the public health sector as part of a national disability prevention initiative (National Council on Disability, 1986; Houk & Thacker, 1989; Pope & Tarlov, 1991).

Marge (1988) defines secondary conditions as those conditions that may be experienced by an individual after they have a primary (or first) disability. They may range from such medical complications as pressure sores and urinary tract infections to problems of psycho-social adjustment, such as depression, to environmental issues such as access problems (Seekins, Smith, McCleary, Clay & Walsh, 1991; Graitcer & Maynard, 1991). In this framework, having a disability is viewed as increasing one's risks for a variety of preventable problems that can limit health, functional capacity and independence.

Secondary conditions may be particularly significant to the 11-15 million individuals with a disability living in rural areas. For example, both rural rehabilitation providers and consumers living in rural areas have reported that access to health providers knowledgeable about disability is one of their major problems (Jackson, Seekins, Dingman & Ravesloot, 1990; Zafonte, Penny & Sarr, 1992).

Despite the significance of secondary conditions to rehabilitation and independent living, little is known about how often they occur or how many people with disabilities develop them. Personal reports, clinical observations and hospital records suggest that the personal and social cost of these conditions can be high. For example, Sugarman (1985) reports that approximately 50% of persons with spinal cord injury (SCI) will develop pressure sores that cost over $30,000 and require up to six months' hospitalization to treat. Few other data are available to help assess the extent and cost of such problems, however. Given the significance of these problems, this new conceptualization views further disabling consequences of a disability as part of a continuum of risk TABULAR DATA OMITTED appropriate for public health attention (Marge, 1988; Houk & Thacker, 1989).

A central component of public health involves surveillance of health-related problems within defined populations (Graitcer, 1987; Thacker & Berkelman, 1988). Surveillance activities allow public health officials to measure the incidence and prevalence of health problems, target interventions to specific geographic areas or population subsets, and monitor changes over time. The purpose of this paper is to report preliminary surveillance data on the incidence of secondary conditions reported by consumers of three independent living centers in a rural state.

Method

Participants and Settings

Respondents were selected from the current service records of three Independent Living Centers (Summit, Inc., the Montana Independent Living Project, and the Yellowstone Valley Independent Living Center) serving 39 of 56 counties in Montana. Surveys were mailed to 456 individuals selected by staff as having impairments that limited their mobility (e.g., spinal cord injuries).

Procedures

Data were gathered using a survey which queried consumers about various personal characteristics (e.g., age) and their experience with 40 different problems previously identified as secondary conditions (Seekins et al., 1991). Respondents were asked to rate the severity of each secondary condition on a scale of 0 to 3, where zero meant the condition had not been a problem, one meant it was a mild or infrequent problem (limits activity 1-5 hours per week), two meant it was a moderate problem (limits activity 6-10 hours per week) during the past year and 3 meant that it had been a significant/chronic problem that limited activity 11 or more hours a week.

Three measures of each secondary condition were calculated, including the number of consumers endorsing an item, average severity, and a problem index. The number endorsing an item was calculated by totaling the number of respondents rating the secondary condition 1, 2 or 3. (The zero point was included on the scale to increase the likelihood of respondents considering all items. Since the "0" rating indicated no problem, only those who rated an item 1, 2 or 3 were counted as endorsing it.) Finally, respondents were asked to rate their overall health and independence on a similar 4-point scale where 0 = excellent, 1 = good, 2 = fair, and 3 = poor.

An average severity rating was calculated for each secondary condition by dividing the sum of severity ratings by the number endorsing the item. This measure helps identify the conditions causing the most difficulty for those who experience them. For example, carpal tunnel syndrome was rated high in average severity, but endorsed by few respondents.

In addition, a Problem Index score for each item was calculated by multiplying the average severity rating by the percentage of respondents endorsing the item. This measure helps identify the most significant problems reported by the most people; this gives weight to both frequency of report and severity.

Data Analysis

In addition to the secondary condition indicators described above, inferential statistics were also computed. First, correlations between a set of variables hypothesized to be related to overall health, overall independence, and the sum of ratings across all conditions (a measure of overall severity of secondary conditions) were calculated to select variables for further analysis. These variables included education, income, number of people in the respondent's household, the year the disability was acquired, and age. It was hypothesized that: (1) the longer an individual had their disability (i.e., time since disability) the greater their adjustment to it might be and the better their overall health, independence, and the fewer secondary conditions one might experience; (2) the higher one's reported income, the better their overall health and independence, and the fewer secondary conditions one might experience because they may be better able to afford care and treatment; (3) the older a respondent, the more likely he or she may be to encounter secondary conditions; (4) respondents with more education may be more likely to learn about and engage in preventive practices - thereby remaining healthier and more independent, and experiencing fewer secondary conditions; and (5) individuals living with others may have more assistance and thereby maintain greater health and independence than those who live alone.

Table 1 presents the correlation matrix for these items. Variables showing a correlation of p .05 with overall health, overall independence, and sum of conditions ratings were next included in a step-wise multiple regression (SPSS, 1992).

Results

Two hundred and thirty-six (236) consumers living in 31 counties of Montana completed the survey. One hundred and fourteen (48.3%) men and one hundred and twenty (50.8%) women responded. One hundred fifty-six (66.1%) listed their race as white, sixty-nine (29.2%) listed their race as Native American, four (1.7%) listed their race as Black, three listed their race as Asian (1.3%), one listed his or her race as Hispanic (.4%) and three (1.3%) did not specify a race. The ages range from 6 to 86 with a mean of 47.9 and standard deviation of 11 years.

Table 2
Total Number of Primary Disabilities Reported

Primary Disability         Number           Percent

Spinal Cord Injury           44               20%
Multiple Sclerosis           38               18%
Arthritis                    35               12%
Traumatic Brain Injury       31               10%
Cerebral Palsy               13                9%
Stroke                       17                7%
Polio                        12                4%
Amputee                      10                3%
Muscular Dystrophy           11                2.5%
Parkinson's Disease           1                1%
Spina Bifida                  1                .5%
Other                        39               13%

One hundred and eleven (47.0%) respondents indicated they were unemployed, twenty-eight (11.9%) were students, thirty-seven (15.7%) worked at part-time jobs, twenty-nine (12.3%) were homemakers, fifty-seven (24.2%) were retired, and sixteen (6.8%) worked at full-time jobs. These numbers sum to greater than 236 because some respondents endorsed more than one category.

The primary disabilities reported by the consumers are presented in Table 2. The total number of primary disabilities reported by the respondents adds to more than 236, as some endorsed more than one primary disability.

The average length of time since acquiring the primary disability was 15.7 years, with a standard deviation of 13 years. The average number of secondary conditions endorsed was 13. The average income reported was $12,665, with a range of $0 to $60,000. The average years of education reported was 12.4, with a standard deviation of 3.3 years. In general, these demographics are similar to other rural community-based survey results (e.g., Turner & Wood, 1985).

Table 3 presents measures of secondary conditions for all respondents in descending order according to the Problem Index score; the conditions experienced by the most respondents with the greatest severity are listed first. Respondents rated their TABULAR DATA OMITTED overall health as 1.7 (standard deviation = .95) and their overall independence as 1.9 (standard deviation = .95). These scores fall in the ranges from fair to good.

Health care insurance coverage may be an important determinant of health status. Table 4 presents insurance status of respondents.

Table 5 summarizes the results of the regression analysis used to examine ratings of overall health, overall independence, and sum of conditions as dependent variables with selected other variables. The sum of condition ratings was the first variable entering into the equations for both overall health and overall independence and accounted for a majority of the variance in both. Reciprocally, overall health and independence accounted for a total of 41% of the variance in the sum of ratings and neither education nor age entered the equation.

Table 4
Reported Health Care Coverage

Health Care Coverage                     Number      Percent

Medicare                                  103          20%
Private Health Insurance                   38          18%
Medicaid                                   35          12%
Medicaid Eligible/Not Receiving            31          10%
Indian Health Service/Tribal Health        13           9%

Other                                      17           7%
No Health Insurance                        12          12%

Income accounted for an additional 5% of the variance in ratings of overall health, while age and overall independence did not enter the equation. Overall health and education accounted for an additional 4% and 2% of variance in ratings of overall independence.

Discussion

This paper reports on the incidence of secondary conditions among adults with physical disabilities served by three independent living centers in a rural state. Participants reported experiencing an average of 13 secondary conditions during the past year. These conditions are ranked using a score that combines incidence and severity. Of note is that 11 of the 15 items receiving the highest problem index scores involve significant TABULAR DATA OMITTED environmental or behavioral components, including pain, depression, isolation, fatigue, sleep disturbances, weight control, physical conditioning problems, mobility, and access.

These problems tend to fall within three areas suggestive of prevention and management strategies. First, exercise components of wellness promotion strategies may be used to address directly problems in physical conditioning and weight control. In addition, wellness promotion may indirectly address problems of fatigue, sleep disturbances, isolation (if conducted in group/social situations) and depression. Second, behavioral management procedures may be used to address directly problems of chronic pain, sleep disturbances, depression and fatigue. Both strategies may easily be employed in an educational framework designed to help adults with disabilities exert more control over their own life and health status.

Finally, difficulties with access (e.g., lack of accessible buildings, etc.) was the fifth leading problem. Access is a basis for social activity and meeting personal needs. Restriction of access may affect independence and health both directly and indirectly. Improving general community access for these respondents might prevent many of the problems with other secondary conditions reported.

The regression analysis shows that respondents' total experience with secondary conditions, as measured by a sum of ratings of these conditions, is a significant predictor of their overall health and independence. The strength of these relations lend support to the validity of the instrument. It also suggests that simply asking consumers to report their overall health and independence may act as a simple risk assessment measure and that by reducing the incidence or severity of secondary conditions we may be able to improve self-assessments of overall health and independence.

Income and education also appear to play a role in reported health and independence, respectively, for this sample. The directions of these associations are less clear, however. For example, one might assume that more income may buy better health care but it may be that lower levels of health (and associated higher incidents of secondary conditions) may act as an obstacle to earning a higher (or any) income.

Some observers have assumed that adults with physical disabilities may learn to accommodate or cope with their disability over time and may thus be at decreased risk for secondary conditions. Such a process might hold as a result of medical and community rehabilitation services received and opportunities to learn new coping strategies. Interestingly, however, the length of time a person in this sample reported having a disability did not appear to influence the number or severity of secondary conditions reported, nor ratings of overall health and independence.

While the pattern of these responses appears to have been remarkably consistent across disabilities, these data may not be representative of the broader population of individuals with disabilities for several reasons. For example, all respondents were consumers of independent living centers, respondents all came from one rural state, there were more female and fewer male respondents than might be expected, and the average length of time since diagnosis of disability was quite high.

Relying on people with disabilities to report their own status would appear to be an efficient method of collecting significant data from mobility impaired adults. DeJong (1979) argues that the individual consumer is likely to be the most knowledgeable person with regard to their disability. Similarly, Marge (1988) and others (Becker, Stuifbergen, Ingalsbe, & Sands, 1989; Hannah, Hannah, Masher & Vardy, 1988; Selker et al., 1986) suggest that a program for preventing secondary conditions will rely on the individual with the disability taking the responsibility for adopting a life-style that reduces risk of these secondary conditions. Assuming such responsibility requires adequate knowledge and support, however. Such education begins during medical rehabilitation. Maintenance and continuing education should continue in the community.

Self-help strategies for preventing and managing secondary conditions may be particularly relevant for individuals living in rural areas. These individuals often lack access to health care providers knowledgeable about disabilities. In fact, consumers living in rural areas often report being a significant source of information about their condition and its treatment for their local health-care providers. Thus, consumer information and training may contribute both to adequate self-management and professional care.

Rehabilitation practitioners can significantly expand their role in the prevention of secondary conditions. First, they can expand their effort to educate local and state public health authorities about rehabilitation. Second, they may more closely examine in-patient education programs to insure that their design maximizes the probability that consumers will practice healthy life-styles after discharge. Third, they might work more closely with community service providers, such as ILCs, to enhance community support systems that might sustain healthy lifestyles (Fuhrer, et al., 1990).

There has been significant debate over the definition and conceptual organization of secondary conditions. While the resolution of these important issues may contribute to theory and the construction of models, it can be argued that consumer-defined issues such as these should be given a place in any scheme. Further, the high ratings and severity of these problems -- often long past initial rehabilitation and at a point where one might expect learning and accommodation -- suggests they should be seriously addressed. In particular, the relatively low rankings of the many medical conditions may lead one to believe that consumers may be relatively satisfied with available medical treatment and management techniques. Conversely, the relatively high rankings of behavioral and environmental problems suggests that research and services might profitably address these areas.

In conclusion, the risk for secondary conditions has become an item on the nation's public health agenda. This significantly expands the constituency of those concerned with disability and rehabilitation. Rehabilitation professionals should welcome these public health allies and strive to build on this collaboration. This work was supported by a grant (C#U59/CUU803400-02) from the Centers for Disease Control

Acknowledgements

This work was supported, in part, by a grant from the Centers for Disease Control, (C#U59/CUU803400-02). The authors wish to thank Larry Burt, Joe Smith, and Mark Long of the Disability Prevention Program for their encouragement. We also want to thank the consumers and staff of Summit, Inc., Montana Independent Living Project, and Yellowstone Valley Independent Living Center for the privilege of working with them. We also appreciate the helpful comments of our colleagues Nancy Arnold, Carlos Lopez, and Kaye Norris on an earlier version of this manuscript. Finally, we gratefully acknowledge the contributions of the staff of Community Rehabilitation Center.

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Tom Seekins, RTC:Rural, 247 Corbin Hall, University of Montana, Missoula, MT 59812-3193.