Preventing and managing secondary conditions: a proposed role for independent living centers.

Pope and Tarlov (1991) define a secondary condition as "a condition that is causally related to a disabling condition and can be either a pathology, an impairment, a functional limitation or an additional disability" (p. 214). People with severe disabilities, such as spinal cord injuries or multiple sclerosis, are at high risk for secondary conditions (Marge, 1988; Seekins, Smith, McCleary, Clay & Walsh, 1990; Whiteneck, et al., 1993). Secondary conditions have also been reported for other disabilities such as post-polio (Aston, 1992; Packer, Martins, Krefting, & Brouwer, 1991), traumatic brain injuries (Brooke, Questad, Patterson, & Bashak, 1992; Labi & Horn, 1990; Yablon, 1993), muscular dystrophy (Suzuki et al., 1993), spina bifida (Patrick, Mahony, & Disney, 1994), and cerebral palsy (Brown, Bontempo, & Turk, 1991).

Recent reports indicate that people with disabilities frequently experience a high incidence of secondary conditions. Based on surveillance data, Montanans with disabilities reported they experienced an average of 14 secondary conditions within the previous 12 months before being surveyed (Seekins, et al., 1990). Similarly, a survey conducted by White, Gutierrez, and Mace (1993) of randomly selected ILC consumers indicated that 83 percent of the responding consumers (N=170) reported experiencing one or more secondary conditions within the past 6 months. Types of secondary conditions reported by consumer respondents included medical situations such as urinary tract infections, pressure sores, and psychosocial issues such as depression. In addition, respondents reported contributing environmental problems such as limited access to physicians' offices.

Traditionally, secondary conditions are viewed as the result of an underlying pathology, impairment, or functional limitation (Nagi, 1991). For example, development of a pressure sore may result from a functional limitation of reduced skin sensation and body movement. Such conditions can come at a high cost to many consumers. Sugarman (1985) estimates that over 50% of wheelchair users will develop a pressure sore sometime in their lives. Treatment of a severe pressure sore for persons with cervical spinal injuries can cost up to $91,000 (Wharton, Milani, & Dean, 1987).

Another secondary condition that people with disabilities frequently experience is urinary tract infections. For example, in a retrospective evaluation of 1,100 University of Alabama spinal cord injury patients who did not have indwelling catheters, only 25% had sterile urine during annual checkups (Graitcer & Maynard, 1990).

The Centers for Disease Control recently identified these and other secondary conditions including cardiovascular-cardiopulmonary, neuromusculoskeletal, and psychosocial needs as areas where further research and training should be conducted to investigate and eventually ameliorate these conditions (Graitcer & Maynard, 1990). Nagi (1991), Fuhrer (1990), and Pope and Tarlov (1991) provide more complete conceptual analyses of the underlying mechanisms that lead to an initial disability and possible onset of secondary conditions. Pope and Tarlov suggest that before a secondary condition can occur, there must be an underlying primary disability - such as spinal cord injury - which sets the occasion for a potential secondary condition such as a pressure sore. Thus, an existing primary disabling condition that comes into contact with some undesirable environmental event such as inadequate rehabilitation, isolation, or infection, starts a potential chain of events including a secondary pathology, which may lead to a secondary impairment which, if untreated may lead to a secondary functional limitation, and ultimately to a secondary disabilitiy.

While pathological factors may contribute to onset of secondary conditions, other systemic factors may also be responsible. For example, a National Spinal Cord Injury Statistical Center report (1989) identified persons with recent SCI, treated in model SCI centers, had an average length of stay (LOS) of about 100 days. Typical length of stays in some model SCI programs now average about 28 days. Given third-party payer pressure for cost-containment in the medical field, the LOS may continue to shorten. SCI patients with such short LOS are only beginning to adjust to their newly acquired conditions physically, emotionally, and cognitively. They may not fully integrate the education and training designed to help them prevent further disabling conditions once they are discharged into the community. This supposition has received some support through recent interviews with SCI individuals, conducted in association with a Centers for Disease Control grant on prevention of secondary conditions (Seekins, et al., 1993). Several consumers reported receiving no education about reducing their risk to secondary conditions during their rehabilitation.

In many rural hospitals, patient education to teach the recently injured person how to reduce risk of secondary conditions may be absent or minimal. Thus, the newly-injured person may learn little about his or her disability, and how to self-identify potential health risks such as pressure sores, and strategies for avoiding them (Jackson, Seekins, Dingman & Ravesloot, 1990). New strategies and channels of outreach need to be identified to contact newly-injured individuals and consumers with long-term injuries or chronic medical conditions who may have forgotten important disability prevention and health maintenance skills. These channels can teach "at-risk" individuals strategies to prevent or reduce risk of secondary conditions.

From the previous discussion we have learned that the problem of secondary conditions for people with disabilities is a very significant one. While there may be different policy and system approaches to address prevention of secondary conditions, this paper will address the role that independent living centers (ILCs) can play in assisting its consumers to prevent and manage onset of secondary conditions. First, it will describe the challenges for ILCs in assisting consumers to reduce risk of secondary conditions. Second, it will discuss a role ILCs can play in incorporating prevention strategies within their existing core services. Finally, the paper will present several conclusions and outline future directions ILCs can take in helping their consumers to reduce risk of secondary conditions.

Challenges and Opportunities for Independent Living Centers

Independent living (IL) philosophy stresses that people with disabilities (often called consumers to denote their role as service recipients) should have the right to live a fully independent life that is based upon their own personal choices, such as where they will live, with whom, where they will work, and how they will maintain their health (DeJong, 1979). Over the past 15 years, a national network of over 400 Independent Living Centers (ILCs) has emerged to support the efforts of consumers to live independently. While ILCs often provide direct support services, they also teach consumers how to advocate for positive change at the personal and system levels by identifying environmental obstacles to achieving their goals. This approach empowers the individual to exert personal control over his or her environment and is radically different from the medical model approach where patients are treated by experts who "know what is best for them." Like the independent living model, the public health approach also views the issues of health promotion and maintenance in a demedicalized fashion. Health and prevention are viewed as personal choices that may require advocacy for environmental change.

While health is acknowledged as an important component of IL philosophy (DeJong, 1979), the issue of health promotion and maintenance is either inadequately addressed or is not addressed by ILC staff and peer support personnel working with their consumers. Most of the leaders of the IL movement have had a civil rights and social change orientation. Their energies have generally focused on establishing basic housing, transportation, implementation of accessibility regulations, and establishment of civil rights. Health promotion was not explicitly contained in the Rehab Act and individuals with disabilities often wanted to distance themselves from anything that involved physicians. As social change and civil rights success has accumulated, and as these leaders have aged, issues of health have moved up the agenda.

One promising channel to provide health promotion, prevention education, and skill training to people with disabilities is the over 400 Independent living centers (ILCs) in the US. These Centers provide basic core services to consumers - such as information and referral, peer support, IL skills training, and advocacy. The ILCs provide other services such as information referral and equipment loan programs. Some Centers are now starting to provide health maintenance and disability prevention information.

ILCs, in this context, are not-for-profit store front operations, rather than residences where consumers live. In most cases, over 51% of the ILC board and staff consist of people with disabilities. This helps to insure that the philosophy and services offered are consumer-controlled (Freiden, 1983). Thus, consumers served by ILCs are encouraged and instructed how to make personal choices that affect their lives. This approach is compatible with suggested public health models employing consumer empowerment for health education and prevention (Wallerstein & Bernstein, 1988).

As part of their outreach services, some ILCs are establishing collaborative relationships with rehabilitation centers. For example, Tate, Rasmussen, and Maynard (1992) reported positive benefits from having ILC consumers offer peer support to recently injured rehabilitation patients. These peers assisted with teaching various modules on independent living and arranged for patients to take field trips to observe coping strategies peers with disabilities use after hospital discharge. Eighty-nine percent of the patients in this program reported it was useful in helping them prepare to go home.

Perhaps, ILCs may need to take the next logical step and assist with community transitions for rehabilitation patients as they are discharged into the community. Additionally, given the continued expansion of managed care in the health care delivery system, ILCs could an play a feasible role as a participant in the managed health care network system to assist consumers with promoting health and reducing their risk to secondary conditions.

Some Challenges

Integrating prevention strategies into ILCs will not be easy as there may be some initial obstacles to overcome. ILCs developed as an empowering alternative to the traditional medical model where control and decisions are exerted by professionals in the "patient's best interest" (see DeJong, 1979 for a more complete discussion on this issue). ILCs might be reluctant to embrace any notion that might be associated with professional medical issues.

Table 1

Independent Living Center Resources Available on Preventing
Secondary Conditions

Resource                        Number of     Percent of
Description                     Reporting     ILCs Reporting ILCs
                                (N=25)

Audiotapes                       2             8
Videotapes                       4            16
Newsletters                     10            40
Knowledgeable Staff             20            80
Information and Referral        21            84
In-House Library                15            60
Peer Support Group              18            72
Rehabilitation Professional      6            24
Other                            2             8

Limited informational resources is another challenge ILCs face in service delivery related to health promotion and prevention of secondary conditions. Lack of such resources was identified in a recent pilot survey conducted by White, Gutierrez, and Mace (1993). The researchers administered surveys to a random sample of 25 ILCs to determine what secondary condition prevention resources they used to assist their consumers.

The results of this preliminary survey, presented in Table 1, indicated that the majority of ILCs had some type of resource available regarding prevention of secondary conditions. Over 70% of the ILCs reported that information on reducing risk to secondary conditions was available to consumers through either information and referral (84%), knowledgeable staff (80%), or peer support (72%).

As suggested above, two resources frequently available at ILCs are the personal experience of IL and peer support staff in coping with disability health issues. While these individuals with disabilities may be knowledgeable about some personal "tips" regarding prevention of secondary conditions (Starkloft, 1990), they may only be able to assist consumers with similar disabilities. For example, a paraplegic peer counselor may not fully understand all the health issues that a consumer with tetraplegia is experiencing. Related to the issue of peer support is the potential for liability due to the sharing of inaccurate information that might cause unintended consequences for the consumer who is the recipient of peer support. ILCs will need to exercise caution as they develop new disability prevention and management programs.

Finally, a continuing challenge facing ILCs is the increasing number of consumers being served with already limited staff resources. This lack of human resources may limit the amount of disability prevention information and health promotion activities they can deliver.

An Opportunity

ILCs can play an important role in supporting their consumers to decrease the risk of secondary conditions while simultaneously promoting better overall health levels. As consumers better understand their disability and learn to avoid potential health complications such as pressure sores, urinary tract infections, and psychosocial problems such as isolation and depression, their overall level and continuity of independent living will be enhanced. This may help reduce the number of IL consumers repeatedly requesting time-consuming IL services because of reoccurring secondary conditions.

A Model for Prevention and Management of Secondary Conditions in ILC Settings

ILCs positively contribute to the enabling process, assisting consumers with disabilities as they strive for more independence in the community. This enabling might be in the form of advocacy for accessible transportation and housing, or in teaching skills to consumers to better manage their personal assistants. Given the present disability prevention and health promotion initiative by the Centers for Disease Control, the time is right for ILCs to take an active role assisting consumers to reduce risk or prevent secondary complications that may result from their primary disabilities.

Table 2 contains a matrix addressing seven areas of involvement that ILCs can pursue in assisting consumers to reduce risk or prevent secondary complications. Given the severity of pressure sores that affect people with disabilities (White, Mathews, & Fawcett, 1989), this illustrative matrix will address strategies that ILCs can use to help consumers prevent pressure sores. The matrix, however, has general application to other types of secondary conditions that may result from primary disabilities such as spinal cord injury, the effects of polio, diabetes, cerebral palsy, acquired head injury, and multiple sclerosis. This model serves a dual function, since it provides a foundation for ILC long-range planning and serves as a completeness check for IL resources needed to help consumers reduce risk of secondary conditions.

This matrix contains prevention activities designed to be integrated into an ILC's present services rather than adding another layer of services on to an often already understaffed program. For example, many ILCs already have equipment loan programs. [TABULAR DATA FOR TABLE 2 OMITTED] Some of the equipment, such as wheelchair cushions or sliding boards could be given to consumers who are at risk of developing pressure sores. Additionally, ILC sponsored support groups could arrange for presentations on health promotion and prevention of secondary conditions. Some ILCs have contracted to conduct health promotion workshops and service delivery to people with disabilities (Seekins, 1991). The Massachusetts Department of Public Health's Office of Disability Prevention has instituted a new Access to Health Program that has provided minigrants ranging from $10,000 to $50,000 to Massachusetts ILCs. This program employs a consumer-controlled, cross-disability, peer empowerment approach that promotes health for consumers with all types of disabilities. Other ILCs have assisted rehabilitation centers in transitioning rehab patients into the community (Tate, Rasmussen, & Maynard, 1992) through the use of peer support. Part of this peer support would include reinforcement for desirable health maintenance behaviors, and information and feedback regarding "at risk" health behaviors that might lead to secondary conditions.

ILCs might also initiate health promotion programs in several other ways. One first step might be to initiate a series of health promotion workshops for consumers with severe disabilities delivered by IL staff. This would require staff to develop a consensus about the nature and importance of health issues, and to acquire reliable information about the prevention and management of secondary conditions. Then, in delivering such workshops, more information about consumers' health concerns might emerge. These could then be addressed in subsequent or advanced series of workshops.

From this basis, health promotion information might be more systematically included into various program components. For example, consumers who participate in health promotion workshops might be recruited as workshop leaders. Health concerns might also be systematically included as objectives in Independent Living Plans (ILPs). This could lead naturally to ILC's advocating for improved access to, modifications of, and inclusion in community-based health promotion services and programs. Concerns over the long-term health of individuals with disabilities might also provide a foundation for negotiating with rehabilitation hospitals, medical service providers, and third-party insurers for more attention to these issues. Finally, such concerns might also lead to working with state health agencies to incorporate disability issues into their ongoing assessments of the health of their constituency population.

While the seriousness of secondary conditions still remains, progress is being made in research and training efforts to prevent and reduce incidence of these chronic problems. Table 3 provides a summary of current research and training addressing secondary condition issues with various populations. The contents shows that a large amount of research focuses on people with spinal cord injuries (SCI). Other disability populations identified in this table include cerebral palsy and traumatic brain injury.

As research results and training materials are more readily disseminated to IL programs, their staff will be better equipped to assist IL consumers to make more informed choices about health maintenance and risk reduction for secondary conditions. Additionally, the use of such tested training materials will ensure the quality and continuity of information provided to consumers regarding secondary condition prevention and management, thus reducing the risk for liability due to misinformation. While the previously described research and training projects are providing useful information and material now, one must also look to the future to plan and seize other opportunities that will be beneficial to the prevention and management of secondary conditions.

Future Directions

The future of health care will likely see an increase in the involvement of community health promotion activities. There is an increasing collaboration between community organizations in identifying health problems and developing strategies to solve them (Fawcett, Paine, Francisco, & Vliet, 1993). Such collaborations will amplify the existing resources available for prevention activities. These activities will be designed to empower communities to take more responsibility for the health and health maintenance of all citizens. This approach, which places personal control in the consumer's hands, is very much compatible with the independent living philosophy (Freiden, 1983).

Another trend is in the area of extending more competent health promotion and disability prevention services to people with disabilities living in rural areas. Demographically, rural and central city areas of our nation have more in common than either has with the third of the population living in suburban rings (Seekins, 1992a). People with disabilities living in rural areas generally lack access to either IL services (Seekins et al., 1990; 1991) or health care providers knowledgeable about disabilities (Jackson et al., 1990). For these consumers, it will be important to extend ILC services to them, develop mechanisms to link rural health care providers to centrally-located experts, and to identify other existing community sectors (e.g., public health nurses) who can redefine their role as including people with disabilities in their health service delivery (Seekins, 1992b).

Conclusion

The development of secondary conditions is a serious problem facing many of the 49 million Americans with disabilities. The best approach is to prevent these complications before they occur. Prevention of secondary conditions could be accomplished though proactive changes in policy and practices.

One of the first places to start is in the rehabilitation process. Recently disabled individuals must receive appropriate and timely patient education to teach them how to prevent or reduce incidence of secondary conditions. However, with increased cost containment and managed care, the rehabilitation process is compressed - drastically reducing the amount of in-hospital treatment the patient receives. When patients do receive patient education information, they may be at a stage where they feel it does not apply to them or they are not receptive to the message. This can interfere with retention or application of materials learned after hospital discharge. Additionally, patients are receiving a tremendous amount of information in a short time period. High amounts of information compressed into a short rehab stay could lead to information overload by the rehabilitation patient.

[TABULAR DATA FOR TABLE 3 OMITTED]

On the other hand, it is possible to image a rehabilitation system that has even shorter in-patient stays, followed by discharge home with extensive in home rehabilitation and IL services. One advantage to such a system may be training that does not require any special effort to generalize to a new setting, as is now required. Further, rehab services could be specifically tailored to a consumer's circumstances - both cultural and physical. Finally, the linkage between medical rehab, IL, and vocational rehabilitation services would be made much easier.

In either case, as individuals with disabilities are discharged into the community, existing channels of service delivery such as ILCs, must be available to assist with independent living and re-integration into the community. In addition, public health agencies and independent living centers should work independently and in collaboration to provide community education and support for preventing and managing secondary conditions. While there are few comparative data, it seems that the absence of policies and practices to support healthy lifestyles for people with disabilities is penny-wise but pound foolish.

While primary prevention of secondary conditions is clearly the best long-term investment, this model has two apparent flaws. First, many people do not go through the ideal comprehensive rehab process. Some with chronic conditions may begin to experience secondary conditions before the primary impairment is even diagnosed. Second, while primary prevention "turns off the tap," there is already a "lake of spilled water." The vast majority of incidence is accounted for by those who are already out in the community. If we only address primary, in-patient preventive interventions, we are missing a lot of people. ILCs may play an important role in improving the health of the large number of people with disabilities related to injuries and chronic diseases who are already living in the community or who rarely have access to in-patient rehab services.

It is clear that when people with disabilities are discharged into the community by rehabilitation centers, some type of safety net will be needed to allow them to maintain a healthy lifestyle. This paper has shown that ILCs could play an important role in assisting consumers with disabilities to maintain their independence as they maintain their health.

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Author Notes

This paper was made possible through funding from the Disability Prevention Program, Centers on Disease Control [grant # DDHS (PH) RO4/CCR808519-02]. The authors would like to thank Rajasekhar Allada, Scott Gardner, Kenneth Golden, Juan Carlos Lopez, Melinda Pavin, Julie Steward, and Andy Pope for their helpful insights with this manuscript.

Glen W. White, University of Kansas, 4001 Dole Center, Lawrence, Kansas 66045-2133.