Overview and Description
In 1978, Mechanic coined the term “illness behavior” to refer to both the adaptive and maladaptive ways that individuals perceive, evaluate, and act on their symptoms.1 Illness behavior has been studied in many health conditions,2–5 including: musculoskeletal injuries, traumatic brain injury, spinal cord injury, heart disease, immune disorders, and cancer. Psychosocial factors affect both psychological as well as physical functioning over time5 which can lead to either adaptive or maladaptive illness behaviors. Classes of adaptive illness behaviors include:
- Active coping (in contrast to passivity, avoidance, or prolonged emotions)
- Social support
- Patient optimism and use of humor
- Positive cognitive appraisal and acceptance (versus negative appraisal such as catastrophizing).
The issue is complex, however, because coping behaviors vary among health conditions. Maladaptive coping for some conditions may be adaptive in other diseases.5 For example, denial, stoicism, emotional coping (e.g., emotional release, problem-solving emotional reactions), or cognitive avoidance6 may be adaptive in spinal cord injury and cancer but in other conditions might be counter-productive. Therefore, one large clinical challenge is to identify the specific coping behaviors that could be productive for any given patient. There is mounting evidence that chronic low grade inflammation triggers changes that contribute to the mental and physical ill health of patients with major depression.7
Relevance to Clinical Practice
Understanding that there are psychological associations between certain ailments, such as musculoskeletal disorders and anxiety and depression,8,9 may help to guide the clinician in their approach. Studies have shown that clinicians need to be more sensitive towards patients’ psychological concerns.8 In addition, “psychological assessment and assistance from a mental health professional should be considered during the hospital stay and rehabilitation period.”8 Patients with traumatic brain injury (TBI) are shown to have higher rates of psychiatric illness and poor psychological health, especially during the first 3 years post-injury.10 Decreased independence with activities of daily living (ADLs) is associated with poor psychological health.10 Areas most effected are “vitality, role limitations at work, school or home due to emotional problems and social functioning.”10 Few TBI patients receive any mental health treatment post-injury,10 further emphasizing the need to address these psychosocial issues in patients undergoing rehabilitation.
The coping patient
General coping behaviors, which are typically considered beneficial to many patients, and in various diseases, include:3,11
- Optimal use of medications and health resources
- Optimal sleep hygiene
- Anxiety/arousal reduction (e.g., by breathing control, biofeedback)
- Activity pacing
- Body mechanics
- Control over interpersonal behavior (e.g., irritability)
- Return to roles (e.g., work, avocations, parenting, spouse), and
- Actions by “significant others” that enable or prompt those behaviors and others (e.g., weight reduction, social outings, distraction, diet).
Resilience, in the context of a disease process with chronic effects and associated long-term disability, is conceptualized as the person’s ability to cope with and effectively adapt to changed circumstances and continue to engage in meaningful activities and maintain quality of life. In the RISE Model of Resilience, factors including intrapersonal factors (e.g., coping, personality), interpersonal characteristics (e.g., relationship quality and social support) that influence the development and expression of resilience, and socio-ecological influences (e.g., accessibility, cultural attitudes) play a part in coping and provides an important framework to guide intervention development and research as well as clinical practice.12
Cognitive-behavioral approaches involve combining:
- patient training in these coping behaviors
- conceptual training on the interactive nature of symptoms, feelings, behaviors, and thoughts, to help shift attention to behavior and thinking, and
- training in general problem solving principles to help with stress management.13
For example, patients may be encouraged to use a step-by-step approach to social problems, to address one aspect of illness at a time, and to break down overwhelming problems into manageable parts.14–16
A major objective of cognitive-behavioral approaches is health self-management. The Common-Sense Model of Self-Regulation (the “Common-Sense Model”, CSM) is a widely used theoretical framework that explicates the processes by which patients become aware of a health threat, navigate affective responses to the threat, formulate perceptions of the threat and potential treatment actions, create action plans for addressing the threat, and integrate continuous feedback on action plan efficacy and threat-progression.17
What is “abnormal” illness behavior?
Pilowsky18 described “abnormal” illness behavior to involve “an inappropriate or maladaptive mode of experiencing, perceiving, evaluating or responding to one’s own state of health which persists despite the fact that a doctor (or other appropriate social agent) has offered an accurate and reasonably lucid explanation of the nature of the person’s health status and the appropriate course of [medical] management (if any), with provision of adequate opportunity for discussion, clarification and negotiation based on a thorough examination of all parameters of functioning …”2 By this definition, illness behavior is only abnormal if the physician has a sufficient understanding of the presence or absence of potentially relevant pathology and its implications for symptom generation, disability, and methods of recovery. Illness behavior is not abnormal if the patient is not given sufficient chance to understand what is present and absent with regard to pathology and how it could cause their symptoms and functional limitations. It is not abnormal until the specific illness behaviors that they can adopt to “normalize”19 (meaning sufficiently improve), their coping have been described or demonstrated.
Steps to address illness behavior
Assess the patient’s understanding of the pathology, nature and prognosis of disease
By providing a thorough medical work-up, the patient, clinical team, and system decision makers (e.g., insurer, employer) can be provided with the most meaningful medical determination of medical causes that might contribute to the patient’s distress.
Assess the patient’s perception of their disease
When patients chronically perceive their diagnosis as worse than is actually is, it is known as catastrophization, a maladaptive social coping mechanism,5,20 and can enhance impairments related to the diagnosis. It is important to note that “catastrophizing has been shown to be the strongest and most consistent psychosocial factor associated with pain and dysfunction” in patients with chronic pain.5 In a number of studies, pain catastrophizing was identified as a significant predictor of chronic pain persisting >3 months following orthopedic surgery. In a systemic review of literature, there was moderate-level evidence for pain catastrophizing as an independent predictor of chronic pain post-TKA.21
Gain an understanding of the patient’s coping responses
These are dependent on learning history, disposition (e.g., personality, long-standing behaviors), comorbid mental health (e.g., depression, post-traumatic stress), and situation.4 It is important to recognize that illness behavior is directed at coping with the predicament, not just the disease.22
Assessment of the patient’s use of relevant coping responses is a key clinical strategy. This is typically approached by history, interdisciplinary examinations, or structured instruments. One such structured instrument is Pilowsky’s Illness Behavior Questionnaire.23 It consists of 62 yes/no items such as, “If the doctor told you that he could find nothing wrong with you, would you believe him?” Another example is the Coping Responses Inventory, which assesses eight classes of health reactions to symptoms and diagnosis.24
Investigate the potential confounding effect of illness behavior
The need to investigate the potential confounding effect of illness behavior on the examination is a clinical challenge. This is because examinations rely on behaviors (e.g., self-report, demonstrated power or joint range). There are several validity methods to identify “non-organic signs” or “somatic amplification” during physical examination.6 Waddell’s method for the low back25 includes:
- Superficial tenderness (sensitive to light skin pinch over a wide area) or non-anatomical tenderness (deep tenderness not localized to musculoskeletal anatomy,
- Simulation of painful pressure or movement under conditions that should not produce pain (e.g., axial loading).
- Comparison of function on examination versus distraction (e.g., dramatically improved straight leg on distraction).
- Regional disturbances, meaning divergence from accepted neuroanatomy for sensation (e.g., stocking distribution) or weakness (e.g., giving way).
Consistency of effort is also important for establishing validity. An example is performing testing using force gauges, e.g., the Jamar for grip. Repeated testing should be within 10% for each trial or setting.26 In the 5-handle position test, alteration of the distribution shape (flatter curve), may reflect sub-maximal effort.27 Rehabilitation psychology testing often includes imbedded scales made up of items that are rarely endorsed unless there is amplification of distress (e.g., Minnesota Multiphasic Personality Inventory Frequency Scale). The detection of somatic amplification can prompt investigation of psychosocial factors and assistance.
Role of psychological assessment is a pertinent factor to consider, as excessive illness behavior has been shown to be related to psychological distress in patients with long standing issues with pain, such as chronic musculoskeletal pain and long-term disability. Thus, some patients may also require psychological assessment.28
Address major situational factors, which are those that seriously affect key relationships (e.g., with spouse, work supervisors), or affect the ability to meet financial needs
Examples: physical limitations, lack of independence with ADLs, difficult transportation/transfers, job security, fertility, sexual intimacy, etc.
One study showed that job insecurity made persons more likely to suffer from serious mental illness, pain conditions as well as other various health issues.29 Therefore, it is important to address job security during the recovery process as it can be associated with “poor health and health risk behaviors.”29 Another study showed that low status jobs are associated with negative emotional states, making these individuals less likely to seek proper medical attention due to decreased motivation, which demonstrates the relationship between socioeconomic status and physical and psychological health.9,10
Provide Coping tools
As a part of the thorough analysis, specialists should specify and provide coping behaviors that could improve recovery trajectory. Although initially time-consuming, time may be saved later by making an early, comprehensive, specification of medical impairment and the relevant adaptive behaviors. This can work by: 1) shifting or improving focus of other providers towards problem-solving illness behaviors, rather than requesting unnecessary reassessments; 2) improving focus in follow-up by virtue of having the previous plan of action at hand; 3) avoiding patient misinterpretations, such as “Dr. Smith thinks I just need to lose weight;” and 4) maintaining patient focus on specific goals and behaviors, rather than on the belief that the specialist must have something else to offer.
A corollary is that the specialist’s role is complete only when all coping errors that are within their scope are identified, made clear and corrected, or found to be too difficult to correct. Even when the practitioner is unable to generate more adaptive behavior, identifying relevant, insufficient, coping behavior has benefits. These include avoiding future unnecessary medical testing prompted by abnormal illness behavior alone, and clarifying insufficient coping for other practitioners who may not be aware of important aspects of the problem (e.g., subtle altered posture). Failure to identify inappropriate coping may limit the ability of the various practitioners involved in the case to provide reassurance, appreciate the potential benefit of specific behavior changes, minimize future diagnostic testing, and work towards closure.
The ability of the patient to control illness through an effective therapeutic plan is influenced by social and behavioral factors. When the clinician and educator focus on achieving the patient’s personal goal, the chances are greater that the therapeutic regimen will appeal to the interests of the patient and be implemented by him or her.
When taking a disease management action, an individual is influenced by information and beliefs he or she has concerning the specific problem. For example, when attempting to manage asthma, people will use (or do not use) inhaled corticosteroids (anti-inflammatory drugs) based, in part, on what they know about the role and importance of inflammation in asthma control and about using a metered dose inhaler.
In addition to providing a patient with information and knowledge regarding their disease process, framing the content as relevant in the process of observing, judging, and reacting to a disease management situation can help health educators can enable individuals to build their observation skills (e.g., through suggesting various means of self-monitoring), ability to make judgments (e.g., by establishing criteria for making assessments), and capacity to react appropriately (e.g., by encouraging realistic evaluations of self- efficacy and analysis of means-ends relationships). They can organize information and make it available in a timely way as learners need it in the self-regulatory process and as they move toward their personal goals.30
Cutting Edge/Unique Concepts/Emerging Issues
The challenges of abnormal illness behavior
Abnormal illness behavior increases the clinician’s time. Time constraints and/or limited interdisciplinary assistance can truly limit the breadth and duration of the physician’s impact on recovery, rendering it insufficient to foster adaptive behavior in some cases. Time consuming interactions may appear tangential to the medical purpose at hand and the clinician may incorrectly perceive that the real source of patient distress is outside their scope. These factors may lead to the conclusion that further use of medical resources is unnecessary because the problem is not medical and further physician effort could be ineffective, yielding more time commitment, criticism, or reinforcement of illness behavior.
There is no doubt that in any disease presentation “pain is a powerful motivating force in the behavior of patient” and has become increasingly challenging to treat.20 Neuroscience education is one intervention that has shown promise in the treatment of chronic pain and possibly other medical issues as well. A person’s understanding of their pain, or disease, effects what they believe will be their future quality of life,5 which may affect their efforts and progress during the rehabilitation process. One systematic review showed that educating patients about the neurological processes, as well as psychosocial factors, that contribute to a patient’s pain experience can help to improve the patient’s physical performance as well as reduce pain and perceived disability related to chronic musculoskeletal pathologies5 and, perhaps, other disease processes as well. There is evidence that exercise may also help to reduce depressive symptoms in adults with neurological disorders.31 Studies on stroke patients showed the importance of addressing psychosocial needs and reintegration into the community to facilitate adaptive illness behaviors.32 However, when considering community reintegration, it is important to note that jobs that are physically repetitive and monotonous are more likely to be associated with musculoskeletal pain syndromes.9
Another challenge when illness behavior is not yet adaptive is demands from non-clinicians for forms and explanations to account for the absence or delay in a better level of functioning. Once abnormal illness behavior is present, it is likely that other stakeholders will be reading the reports. An ideal series of reports convey much of what the system decision-makers require. Reporting statements include discussing reasonable disease or injury determinants, and conveying diagnoses, but can also involve clarifying adaptive and maladaptive illness behavior. Examples of the latter include:
- “Ms. Kelly shows a counter-productive movement pattern. She contracts the trapezius, potentially as a reflexive response to pain, apprehension, or habit. This prevents shoulder abduction and progress in restoring range and strength. She should practice range exercises in supine position to remove gravity. A referral has been made to a physiotherapist with experience in this problem.”
- “A low dose tricyclic has been started, but sleep hygiene should be assessed as well.”
- “Ms. Allan has been advised to try to lose 20 pounds as one of several changes that should help her condition. She wants to try herself first but is open to a referral to a weight loss program if this is insufficient.”
- “The difference between hurt versus harm was discussed. This did seem to make some difference in Mr. Stern`s own plan of action to rehabilitate the joint.” Alternatively, “He did not think that knowing this will make a difference to his movements. A referral has been made to physiotherapy to help him work through this.”
As physiatrists, we are interested in treating the person as a whole. It is important that we not only recognize the impact of these factors on disease, but that we also strive to eliminate its negative effects on rehabilitation and empower the patient to overcome these barriers by addressing these psychological issues.10
Gaps in Knowledge/Evidence Base
Addressing illness behavior in disability
In requests for clarification of disability, it may be reasonable to explain how the barriers to sufficient functioning that are within the physician’s scope, seem clear. It may also be evident that the patient has been unable to overcome them, and continues to show the specific abnormality in functioning. Alternatively, if the practitioner cannot find a clear impairment or coping barrier, then they are not in a position to help the patient with a statement about disability. With patient consent, the insurance form could include an appended summary of the analysis, in the form of objective physical findings, and an explanation of more effective coping behaviors. The American Medical Association has a number of publications which describe this process in detail.33 The end of the specialist’s role, whether sufficient or not, is a conclusion that the reader can naturally come to on their own.
- Mechanic D. The concept of illness behaviour: culture, situation and personal predisposition. Psychol Med. 1986;16(1):1-7. doi:10.1017/s0033291700002476
- Martz E, Livneh H, eds. Coping with Chronic Illness and Disability. Boston, MA: Springer US; 2007. doi:10.1007/978-0-387-48670-3
- Petrie KJ, Jago LA, Devcich DA. The role of illness perceptions in patients with medical conditions. Curr Opin Psychiatry. 2007;20(2):163-167. doi:10.1097/YCO.0b013e328014a871
- DeGood DE, Tait RC. Psychosocial Assessment: Comprehensive Measures and Measures Specific to Pain Beliefs and Coping. In: In D. C. Turk & R. Melzack (Eds.), Handbook of Pain Assessment. ; 2001:320–345.
- Jensen MP, Moore MR, Bockow TB, Ehde DM, Engel JM. Psychosocial factors and adjustment to chronic pain in persons with physical disabilities: a systematic review. Arch Phys Med Rehabil. 2011;92(1):146-160. doi:10.1016/j.apmr.2010.09.021
- Moos, R. Holahan C. Adaptive Tasks and Methods of Coping with Illness and Disability. In: Martz E, Livneh H, Eds. Coping with Chronic Illness and Disability. 2007th ed. (Martz E, Livneh H, eds.). Memphis, TN: Springer US; 2007. doi:10.1007/978-0-387-48670-3
- Leonard BE. Inflammation and depression: a causal or coincidental link to the pathophysiology? Acta Neuropsychiatr. 2018;30(1):1-16. doi:10.1017/neu.2016.69
- Zieger M, Schwarz R, König H-H, Härter M, Riedel-Heller SG. Depression and anxiety in patients undergoing herniated disc surgery: relevant but underresearched – a systematic review. Cent Eur Neurosurg. 2010;71(1):26-34. doi:10.1055/s-0029-1225325
- Lundberg U. Stress responses in low-status jobs and their relationship to health risks: musculoskeletal disorders. Ann N Y Acad Sci. 1999;896(1):162-172. doi:10.1111/j.1749-6632.1999.tb08113.x
- McCarthy ML, Dikmen SS, Langlois JA, Selassie AW, Gu JK, Horner MD. Self-reported psychosocial health among adults with traumatic brain injury. Arch Phys Med Rehabil. 2006;87(7):953-961. doi:10.1016/j.apmr.2006.03.007
- Duddu V, Isaac MK, Chaturvedi SK. Somatization, somatosensory amplification, attribution styles and illness behaviour: a review. Int Rev Psychiatry. 2006;18(1):25-33. doi:10.1080/09540260500466790
- Anderson MA, Buffo C, Ketcher D, et al. Applying the RISE Model of Resilience in Partners Post-Stroke: A Qualitative Analysis. Ann Behav Med. June 2021. doi:10.1093/abm/kaab053
- Folkman S. Stress: Appraisal and Coping. In: Encyclopedia of Behavioral Medicine. Cham: Springer International Publishing; 2020:2177-2179. doi:10.1007/978-3-030-39903-0_215
- McHugh S, Vallis M. Illness Behaviour: Operationalization of the Biopsychosocial Model. In: Illness Behavior. Boston, MA: Springer US; 1986:1-31. doi:10.1007/978-1-4684-5257-0_1
- Stanos S. Focused review of interdisciplinary pain rehabilitation programs for chronic pain management. Curr Pain Headache Rep. 2012;16(2):147-152. doi:10.1007/s11916-012-0252-4
- Sveinsdottir V, Eriksen HR, Reme SE. Assessing the role of cognitive behavioral therapy in the management of chronic nonspecific back pain. J Pain Res. 2012;5:371-380. doi:10.2147/JPR.S25330
- Leventhal H, Phillips LA, Burns E. The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management. J Behav Med. 2016;39(6):935-946. doi:10.1007/s10865-016-9782-2
- Pilowsky I. Abnormal illness behaviour. Br J Med Psychol. 1969;42(4):347-351. doi:10.1111/j.2044-8341.1969.tb02089.x
- Riding TM. Normalization: analysis and application within a special hospital. J Psychiatr Ment Health Nurs. 1997;4(1):23-28. doi:10.1111/j.1365-2850.1997.tb00173.x
- Louw A, Diener I, Butler DS, Puentedura EJ. The effect of neuroscience education on pain, disability, anxiety, and stress in chronic musculoskeletal pain. Arch Phys Med Rehabil. 2011;92(12):2041-2056. doi:10.1016/j.apmr.2011.07.198
- Katz J, Burns L, Ritvo S, Ferguson M, Clark H, Seltzer Z. Pain catastrophizing as a risk factor for chronic pain after total knee arthroplasty: a systematic review. J Pain Res. January 2015:21. doi:10.2147/JPR.S64730
- Sackett D, Tugwell P, Guyatt G, Logan R. Clinical Epidemiology: A Basic Science for Clinical Medicine. J Epidemiol Community Heal. 1992;46(5):549-549. doi:10.1136/jech.46.5.549
- Pilowsky I, Bassett D, Barrett R, Petrovic L, Minniti R. The Illness Behavior Assessment Schedule: reliability and validity. Int J Psychiatry Med. 13(1):11-28. doi:10.2190/lddl-r28d-t39h-w3dy
- Moos R. Coping Responses Inventory Adult Form Professional Manual. Odessa, FL: Psychological Assessment Resources. 1993.
- Waddell G, Morris EW, Di Paola MP, Bircher M, Finlayson D. A concept of illness tested as an improved basis for surgical decisions in low-back disorders. Spine (Phila Pa 1976). 1986;11(7):712-719. doi:10.1097/00007632-198609000-00010
- Janda DH, Geiringer SR, Hankin FM, Barry DT. Objective evaluation of grip strength. J Occup Med. 1987;29(7):569-571. http://www.ncbi.nlm.nih.gov/pubmed/3612331.
- Goldman S, Cahalan TD, An KN. The injured upper extremity and the JAMAR five-handle position grip test. Am J Phys Med Rehabil. 1991;70(6):306-308. http://www.ncbi.nlm.nih.gov/pubmed/1742000.
- Olaya-Contreras P, Styf J. Illness behavior in patients on long-term sick leave due to chronic musculoskeletal pain. Acta Orthop. 2009;80(3):380-385. doi:10.3109/17453670902988352
- Khubchandani J, Price JH. Association of Job Insecurity with Health Risk Factors and Poorer Health in American Workers. J Community Health. 2017;42(2):242-251. doi:10.1007/s10900-016-0249-8
- Clark NM, Gong M, Kaciroti N. A Model of Self-Regulation for Control of Chronic Disease. Heal Educ Behav. 2014;41(5):499-508. doi:10.1177/1090198114547701
- Adamson BC, Ensari I, Motl RW. Effect of exercise on depressive symptoms in adults with neurologic disorders: a systematic review and meta-analysis. Arch Phys Med Rehabil. 2015;96(7):1329-1338. doi:10.1016/j.apmr.2015.01.005
- Satink T, Cup EH, Ilott I, Prins J, de Swart BJ, Nijhuis-van der Sanden MW. Patients’ views on the impact of stroke on their roles and self: a thematic synthesis of qualitative studies. Arch Phys Med Rehabil. 2013;94(6):1171-1183. doi:10.1016/j.apmr.2013.01.011
- Talmadge J, Malhorn J, Hyman M. AMA Guides to the Evaluation of Work Ability and Return to Work. In: Occupational Medicine. 2nd ed. Portland, Oregon; 2012.
Original Version of the Topic
Dinesh A. Kumbhare, MD, William Parkinson, PhD. Influence of psychosocial factors on illness behaviors. 10/22/2013.
Previous Revision(s) of the Topic
Sherry Igbinigie, MD, Stephanie Sneed, MD, and Matthew Igbinigie, BS. Influence of psychosocial factors on illness behaviors. 4/28/2017.
Stephanie Sneed, MD
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Irvin Quezon, MD
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