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A Conceptual Model for Identifying, Preventing, and Managing Secondary Conditions in People With Disabilities

James H. Rimmer, Ming-De Chen, Kelly Hsieh
DOI: 10.2522/ptj.20100410 Published 1 December 2011

Abstract

Secondary conditions are considered a direct consequence of having a disability, and many are presumed to be preventable. Although a few researchers have noted that people with disabilities are exposed to several secondary conditions, including pain, fatigue, depression, and obesity, what is lacking in the literature is a conceptual framework for understanding the antecedents, risk factors, and consequences of secondary conditions. To move the rehabilitation and public health professions toward a more unified approach to understanding and managing secondary conditions as well as distinguishing them from chronic and associated conditions, this article proposes a set of criteria for defining secondary conditions and a conceptual model that considers the potential factors associated with their onset, impact, severity, and management.

Advances in modern medicine have afforded millions of adults with disabilities the prospect of living longer.1 A major public health priority for people with and without disabilities is the promotion of optimal health, that is, the resilience of people who succeed in achieving a positive balance between gains and losses in health across the life span.2 Maintaining or improving health can be more challenging for people with disabilities because they are at increased risk for several physical, psychological, social, and emotional problems that are referred to in the published literature as secondary conditions.3–12 Health trajectories typically affected in the general population by lifestyle behaviors and genetics have a third, less understood dimension in people with disabilities: the onset and course of secondary conditions and their “weighted” or “additive” effect on optimal health and well-being.13 Several cross-sectional studies reported an average of 4 to 13 secondary conditions in people with physical and cognitive disabilities.2,6,10,14,15 These conditions appear to have a profound negative impact on the health and function of people with disabilities and, in the aggregate, have the potential to severely restrict participation in general activities.16–22

In a 2007 report, The Future of Disability in America,23 the Institute of Medicine emphasized the need for health care and rehabilitation professionals to understand the onset, progression, and severity of secondary conditions with the goal of prescribing more clearly defined and articulated interventions and management protocols to reduce or prevent their occurrence.24–27 Identifying and developing effective methods and strategies for preventing and managing secondary conditions are increasingly important tasks for all health care professionals who work with children and adults with disabilities.28 There is a general lack of understanding of the potential risk factors associated with the onset, severity, course, and impact of secondary conditions in people with disabilities.10,29 It also is unclear whether certain secondary conditions (eg, weight gain) increase the risk of other secondary conditions (eg, pain, fatigue). Although there is a presumption that most secondary conditions (eg, pain, fatigue, depression, sleep difficulties) can be mitigated or prevented with appropriate management strategies,30,31 the published literature is devoid of interventions and management protocols that address specific secondary conditions for certain populations.

The 2 secondary condition conceptual models in the published literature provide an important framework for recognizing the impact of secondary conditions in people with disabilities.10,29 Although these models provide a baseline understanding of the potential impact of secondary conditions in people with disabilities, they are limited in terms of advancing an understanding of how to identify, classify, and manage secondary conditions. Recognizing this gap, we propose a definition for secondary conditions and an expanded conceptual model that is based on and integrates the existing models and that addresses the onset, course, outcomes, and management of secondary conditions.10,29,32

Disability and Secondary Conditions

The definition of disability has been debated for many years, and various federal agencies use their own definitions according to their mission and agency directives. For the purpose of this article, the more contemporary definition of disability, composed by the World Health Organization, as “an umbrella term for impairments, activity limitations and participation restrictions,”32(p3) provides a framework for understanding both medical and social perspectives of disability, as well as the potential management strategies for preventing or minimizing the effects of secondary conditions.33 The World Health Organization definition characterizes disability from both individual and environmental perspectives and recognizes that the severity or impact of a disability (ie, impairments, activity limitations, and participation restrictions) can be positively or negatively influenced by the environmental context. To begin building a framework for identifying and managing secondary conditions in people with disabilities, we believe it is important to first determine their occurrence in people who have common traits or characteristics (eg, people who have a spinal cord injury and use a manual wheelchair for ambulation) and in whom professionals can begin recognizing, preventing, and managing certain health conditions (ie, secondary conditions).

The term secondary conditions has had a unique historical association with people with disabilities, dating back to February 1986, when it was first described under the description of secondary disabilities in a report published by the National Council on Disability (formerly called the National Council on the Handicapped).34 The term was later changed to secondary conditions to avoid confusion with existing disabilities.35 Although many of these conditions (eg, pain, fatigue, weight gain, depression) also occur in people without disabilities,6 what makes them unique in people with disabilities is that they occur at a much higher frequency in both children11,19,20,36,37 and adults with disabilities.6,11,38,39 This higher frequency is one of the criteria that we used in considering a condition to be a secondary condition.

There has been some controversy in the published literature concerning the definition of a secondary condition.40 As shown in Table 1, some researchers have defined a secondary condition as a disease entity or medical condition that stems directly or indirectly from a primary disability (eg, pressure ulcers, pain, fatigue).4–8,10,11,25,29,39–46 Other researchers have used the literal definition of the term condition (described in the Merriam-Webster dictionary as “a state of being”47) to include conditions that occur secondary to a disability and are a direct result of having a disability (such as problems moving around the community and poor or limited access to health care).20,24,33 In the former definition, only physical and mental health conditions are considered secondary conditions.

View this table:
Table 1.

Definitions of Secondary Conditions in Extant Literature, in Chronological Order

One approach to resolving this debate is to define a secondary condition by separating what would be considered a risk factor from the resultant health condition. Just as high blood cholesterol is classified as a risk factor for heart disease but is also considered to be a health condition with its own set of management strategies (eg, medication, diet, exercise), certain conditions that can be considered risk factors for subsequent health conditions could be stratified as such. In this hierarchical structure, social isolation would be a secondary condition risk factor for depression (ie, the secondary condition), and poor hygiene would be a secondary condition risk factor for pressure ulcers. Separating the 2 conditions by labeling one as the “risk factor” and the other as the resultant “secondary condition” provides rehabilitation and health professionals with a unifying framework that maximizes the expertise of both sets of professionals and establishes potential management strategies based on reduction of the secondary condition risk factor or reduction of the actual secondary condition. The process begins with the identification and management of risk factors (ie, the primary condition that predisposes an individual to the secondary condition) and continues with subsequent management (eg, through interventions) of the secondary condition.

Although there are nuances in the meaning and interpretation of the various definitions of secondary conditions in the published literature, the common element among all of them is that the onset of secondary conditions is related to the primary disability and occurs subsequent to it.8,23,48 Although we recognize that both sets of definitions are accurate in terms of their literal or conceptual interpretation of what constitutes a condition, there is a need for a core set of criteria that separate secondary conditions from risk factors, associated conditions, and comorbidities. Therefore, we propose the following hierarchical set of criteria for defining a secondary condition (Fig. 1): (1) it occurs after an individual acquires or is born with a disability, (2) the characteristics of the condition are not associated with the trauma (eg, urinary incontinence in someone with a spinal cord injury is a direct result of the injury and therefore is not a secondary condition) or progression of the disability (eg, declining eyesight in someone with retinitis pigmentosa), (3) it is more prevalent in people who have a disability than in those who do not have a disability, (4) it is not caused by medication or intervention (ie, some medications or interventions lead to adverse health changes), and (5) it is a health condition (versus a risk factor for a health condition).

Figure 1.
Figure 1.

Algorithm for identifying secondary conditions and corresponding management spectrum. COPD=chronic obstructive pulmonary disease.

Figure 1 provides a decision-making algorithm for identifying secondary conditions and separating them from other conditions, complications, and risk factors. Although many secondary conditions respond to effective strategies for prevention or management, some secondary conditions may not be preventable and may be related to certain stochastic factors beyond current understanding. However, most secondary conditions (and their risk factors) can be managed with effective health promotion, rehabilitation, assistive technology, medical care, or a combination of these.25 Secondary conditions that are not preventable can be managed with medication, assistive technology, or both.

Conceptual Model for Understanding and Managing Secondary Conditions

The conceptual model that we propose for understanding the onset, course, and outcomes of secondary conditions is shown in Figure 2. In constructing this framework, we considered earlier models10,14,35 that suggested relationships between secondary conditions and potential risk factors but separated these variables into nonmodifiable antecedents and modifiable risk factors. We also expanded our model to provide more structure to the theoretical consequences of secondary conditions categorized into the 3 domains of the International Classification of Functioning, Disability and Health (ICF)32—body functions/structures, activities, and participation—and the potential management strategies associated with them.

Figure 2.
Figure 2.

Conceptual model of onset, course, and outcomes of secondary conditions in people with disabilities.

The top half of our conceptual model (left axis) addresses the onset and course of secondary conditions (nonmodifiable antecedents and modifiable risk factors), and the bottom half (left axis) of the model identifies the outcomes associated with secondary conditions at the individual and societal levels. Along the right axis (lengthwise) are prevention and intervention strategies (rehabilitation, health promotion, assistive technology, and policy).

Nonmodifiable Antecedents

Four sets of nonmodifiable antecedents directly or indirectly affect the risk factors associated with the onset of secondary conditions: sociodemographic factors, pre-existing conditions, disability-related factors, and associated conditions. Sociodemographic factors include age, sex, education, socioeconomic status, marital status, residence, race/ethnicity, living arrangement (eg, alone, with family members, in congregate care), and use of assistive aids. Pre-existing conditions include chronic health conditions such as mental health disorders (eg, bipolar disorder) and lifestyle-related disorders (eg, type 2 diabetes, hypertension), both of which are not associated with the primary characteristics of the disability. Disability-related factors include type of disability, severity of disability, and duration of disability. Associated conditions include concurrent health impairments that are directly linked to the primary disability (eg, spasticity, seizures, incontinence).

Modifiable Risk Factors

Modifiable risk factors are separated into personal and environmental risk factors. In combination, nonmodifiable antecedents and modifiable risk factors act as precipitating factors that result in the onset of 1 or more secondary conditions. Personal risk factors include behaviors such as overuse or disuse, reduced or no physical activity, poor diet, poor use of medications, poor participation in rehabilitation, and increased use of substances (eg, tobacco, alcohol, prescribed medications, illicit drugs). Environmental risk factors include reduced or poor-quality health care, decreased access to the built environment, poor health promotion access (eg, a lack of transportation to community health promotion programs), and limited or no social support. Although other risk factors may mediate the relationship between an existing disability and the onset or course of secondary conditions, we focused primarily on those identified as being amenable to key management initiatives. The multiple combinations that can occur from nonmodifiable antecedents (eg, severe disability, mental health condition) and modifiable risk factors (eg, high rates of sedentary behavior, poor diet) should prove helpful in designing interventions that address modifiable risk factors within the context of nonmodifiable antecedents.

Outcomes of Secondary Conditions

One or more secondary conditions can lead to poor outcome trajectories at the individual (micro) level, societal (macro) level, or both. Examples of individual-level outcomes associated with secondary conditions include lower health-related quality of life, reduced community participation, increased health care use, and decreased employment. Outcomes at the societal level include increased cost of health care and increased health disparities. Preventing or managing secondary conditions can support lower health care costs, reduce health problems, and improve best practices in clinical and community care.

Secondary Condition Prevention and Intervention Strategies

Promoting early identification of and knowledge about mediating variables that contribute to secondary conditions can reduce their risk and improve physical and psychological functioning through various health-related behaviors.30 On the right axis (lengthwise) of our conceptual model (Fig. 2) are prevention and intervention strategies (rehabilitation, health promotion, assistive technology, and policy). Specific management or intervention programs could be designed from the perspectives of various professional groups to reduce the risk factors associated with a secondary condition or to eliminate or reduce the severity of a secondary condition. For example, if an individual with multiple sclerosis is at risk for falls, rehabilitation professionals could provide certain exercises that strengthen lower-leg musculature to reduce the risk of falls as well as teach the client certain skills or adaptations for maintaining better balance and safety while ambulating or performing household chores; assistive technology professionals could recommend various types of devices to reduce the risk of falls (eg, quad cane, reaching stick); health promotion specialists could recommend safe and effective community-based physical activity at a local exercise facility; and federal, state, or local policymakers could develop policies that support universally designed exercise equipment and subsidized fitness program memberships for people with disabilities.

Case Study Illustrating the Use of Our Conceptual Model for Identifying and Managing Secondary Conditions

We use our conceptual model to track the onset, course, outcomes, and prevention and intervention strategies for the common secondary condition of shoulder pain experienced by many people with spinal cord injury.22,29 Figure 3 shows the antecedents associated with shoulder pain, including sociodemographic factors (eg, age, living arrangement), pre-existing conditions (eg, previous shoulder trauma from overuse injury and a fall),49 disability-related factors (eg, tetraplegia, poor shoulder strength and endurance, limited range of motion),50 and associated conditions (eg, limited hand and trunk control).50 Several personal and environmental risk factors related to shoulder pain can be modified through clinical prevention and intervention. For example, overuse can contribute to shoulder pain in people with spinal cord injury51 because of a high volume of wheelchair propulsion and repetitive downward pressure on the shoulder joint when performing transfers and pressure relief and overhead reaching activities.52 Environmental risk factors include propelling a wheelchair over challenging inclines (eg, hills, ramps, curb cuts).53,54

Figure 3.
Figure 3.

Sample case study of the secondary condition of shoulder pain in an individual with spinal cord injury (SCI). MRI=magnetic resonance imaging.

Once a secondary condition (eg, shoulder pain) occurs or progresses, the conceptual model provides the framework for identifying the outcomes associated with it. For shoulder pain, individual-level outcomes include reduced quality of life because of an inability to perform activities of daily living independently, decreased participation in social activities, higher medical costs for rehabilitation and medical care, and reduced employment because of pain-related sick days.55

Finally, the 4 prevention and intervention strategies shown in the conceptual model (right axis of Fig. 3) identify the intervention and management domains for preventing or managing the secondary condition (shoulder pain). Rehabilitation, assistive technology, health promotion, and policy professionals each have roles in facilitating the prevention or management of the secondary condition. Rehabilitation specialists can teach an individual strengthening and stretching exercises for reducing or preventing further shoulder pain as well as appropriate wheelchair propulsion and pressure relief techniques for reducing or minimizing stress on the affected shoulder. Health promotion professionals can offer safe and effective aquatic or land-based exercise programs to strengthen the shoulder musculature. Assistive technology professionals can recommend a power-assist wheelchair for supporting propulsion up inclines and for long-distance travel. Policy advocacy groups can recommend health care coverage for subsidized fitness program memberships and power-assist wheelchairs.

Major Secondary Conditions Experienced by People With Disabilities

Table 2 shows secondary conditions reported in several studies. The conditions that are considered antecedents or risk factors are identified. Interestingly, common secondary conditions, such as pain, fatigue, depression, and deconditioning, appear to be problematic across many different disability groups. Although the type, onset, severity, and progression of secondary conditions among the groups may differ, the common theme for all of them is that they have an adverse impact on health and must be managed to prevent further complications (eg, impairments, activity limitations, participation restrictions).

View this table:
Table 2.

Most Common Physical and Psychosocial Secondary Conditions Reported in Previous Research on Nonspecific Disability Groups, in Order of Median Prevalence

Promoting Higher-Quality Research in Secondary Condition Prevention

Despite the significant impact that secondary conditions can have on quality of life and the ability to live independently,20,56 prospective research examining the risk factors associated with their onset, severity, and progression in people with categorical (ie, specific type of disability) and noncategorical (ie, broad disability categories, including multiple types of disability) disabilities is limited. The published studies identifying secondary conditions as a major health problem in people with disabilities have used either cross-sectional, state-level data6,10 or secondary analyses of national data sets.39 Each of these types of studies has limited utility in establishing cause-effect associations across the life span.23

Research on the identification of specific antecedents and risk factors associated with the onset of certain secondary conditions is limited. A lack of standardized instruments that address multiple secondary conditions (eg, fatigue, pain, obesity, depression, pressure ulcers) within the context of personal risk factors (eg, poor health-related behaviors) and environmental risk factors (eg, no assistive technology, difficult built environment) makes it difficult to fully assess their impact on the health and function of people with disabilities. A lack of understanding also has limited the development of effective interventions targeted specifically to the underlying risk factors associated with certain secondary conditions.

The identification of a research agenda for examining the severity and impact of specific secondary conditions in people with disabilities is a crucial step toward developing evidence-based practice to mitigate their adverse effects.24,57 There is a pressing need to better understand how secondary conditions may be interrelated with optimal health and function, how they may affect individual function related to community participation (including work and leisure), and how they may be prevented or mitigated through various types of interventions that engage multiple stakeholders from the medical rehabilitation, health promotion, and public health communities. As more knowledge about the types of secondary conditions that affect certain groups of people with disabilities is gathered, it will be critical to gain a better understanding of personal and environmental risk factors so that the sequence of events surrounding them can be determined.25 Promoting early identification of and knowledge about risk factors that contribute to secondary conditions will allow multiple professional groups to customize interventions to reduce or minimize the risk of secondary conditions.

Conclusion

The model that we have proposed for understanding the risk factors and consequences of secondary conditions will help facilitate sustainable rehabilitation and health promotion research to try to identify and reduce these health disparities in people with disabilities. The prevention or management of secondary conditions, the risk factors associated with them, or both requires strong interdisciplinary collaboration among professionals in medicine, rehabilitation, assistive technology, health promotion, and public health.

Footnotes

  • All authors provided concept/idea/project design and writing. Dr Rimmer provided fund procurement.

  • This work was supported by grant H133E070029 from the Rehabilitation Engineering Center on Interactive Exercise Technologies and Exercise Physiology for People With Disabilities, National Institute on Disability and Rehabilitation Research.

  • Received November 28, 2010.
  • Accepted August 4, 2011.

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Vol 96 Issue 12 Table of Contents
Physical Therapy: 96 (12)

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A Conceptual Model for Identifying, Preventing, and Managing Secondary Conditions in People With Disabilities
James H. Rimmer, Ming-De Chen, Kelly Hsieh
Physical Therapy Dec 2011, 91 (12) 1728-1739; DOI: 10.2522/ptj.20100410

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A Conceptual Model for Identifying, Preventing, and Managing Secondary Conditions in People With Disabilities
James H. Rimmer, Ming-De Chen, Kelly Hsieh
Physical Therapy Dec 2011, 91 (12) 1728-1739; DOI: 10.2522/ptj.20100410
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