The Time Has Come to Include It in DSM Iterations

The systematic review by Patierno, Fava, and Carrozzino documents that the category of illness denial in medical disorders is not rare, has limited data about treatment methods, and fosters both morbidity and mortality in patients [1]. Remarkably, illness denial is not included in the most recent DSM-5 iteration except in the discussion of the category Psychological Factors Affecting Other Medical Conditions where there is a brief clause that “maladaptive health behaviors such as denial of symptoms” may be part of the diagnostic features of this category [2]. This current review should strongly encourage the next DSM Steering Committee to consider illness denial in medical conditions to be included separately as a unique category of a mental disorder. The current systematic review reinforces Muskin et al. [3] which urged “Maladaptive Denial of Physical Illness: A Useful New ‘Diagnosis’” to be included in DSM-4. His study demonstrated that there was no adequate category in DSM-4 to describe denial of an illness and necessary treatment, yet using a semi-structured interview this category was found in 2.5 percent of 317 psychiatric consultations. This rate is probably much higher if non-consultation patients were included.

Illness denial exists along a continuum of health attitudes and behaviors as discussed by Fava et al. [4]. Illness denial was considered at the extreme of health damaging phenomena. What is remarkable is that the health affirming categories discussed in their paper included hypochondriasis; disease phobia; and health anxiety which are well represented in current psychiatric taxonomies whether DSM or ICD while illness denial is conflated with lack of adherence to treatment. Poor adherence assumes the patient recognizes is not complying with signs and symptoms and necessary behaviors and treatment that are consciously accepted. Illness denial is disavowal or misattribution of observable signs or distressing symptoms that require medical evaluation and possible treatment if a serious medical condition is discovered.

Illness denial was initially reported in the 19th century neurological literature as case reports by luminaries such as Babinski and in 1955 an important monograph Denial of Illness: Symbolic and Physiological Aspects reviewed denial in medical disorders and with an emphasis on lack of insight following injuries in the central nervous system [5, 6].

A contemporary view of illness denial offers a biopsychosocial perspective. Talcott Parsons a sociologist delineated the ideal role modifications that illness may cause and popularized the construct of “sick role” [7]. The sick role connotes that the individual with a medical disorder ideally recognizes signs and symptoms indicative of a medical disorder; seeks medical treatment and cooperates with medical care during which time they are relieved of usual tasks and activities that the illness may compromise. Finally, the patient should relinquish such restrictions when recovered. Parson’s model was an idealized view of how medical care is managed from a sociological perspective. Parson’s description of the patient’s reaction to illness was that it was idealized and did not focus upon difficulties in his model from either patient’s behaviors, physician’s actions, or sociocultural issues. David Mechanic also a medical sociologist subsequently proposed illness behavior as more as more realistic term than Parsons’ idealized typology [8].

Mechanic described examples of abnormal sick role behavior such as not seeking or complying with treatment or affectively reacting by denying the implications of signs or symptoms or reacting without distress to the prognosis of a serious disease. He also observed that financial concerns and lack of medical resources limited full compliance with adequate medical care. These social issues continue today and seriously hamper adequate medical care in the USA and many countries worldwide. Issy Pilowsky, a psychiatrist, subsequently reviewed psychiatric categories linked to abnormal illness behavior in his studies of hypochondriasis and pain-related behaviors. He partitioned abnormal illness attitudes and behaviors as either disease affirming as in hypochondriasis or illness anxiety or disease denying as in illness denial. He constructed the multidimensional Illness Behaviour Questionnaire which included a denial of illness dimension [9, 10].

Various etiologic theories attempt to explain how illness denial arises in the individual. These include psychodynamic, cognitive, and interpersonal [11]. The psychodynamic approach considers ego defense mechanisms to unconsciously repress fearful external perceptions and ideation by repressing the meaning a perceived painful symptom, or physical sign. Serious chest pain is rationalized as indigestion and anxiety is isolated. The limiting factor in psychodynamic theories is the lack of external validation. Cognitive factors are posited to derail information processing when the denying individual is overwhelmed by information considered dangerous and replaces such ideation with opposite or more benign affective responses. It is essential to recognize the interpersonal issues that mandate a social factor to foster denial of symptoms that warn of a medical disorder. The social factors in denial have been elegantly described by Avery Weisman and Thomas Hackett as a social act wherein there is a shared rearrangement of the reality whether a sign or symptom of a medical problem [12]. This external “truth” must include someone who provides the denier with an accurate assessment of probable causes of such discomfort or how to seek medical help for diagnosis and treatment. The current information expansion, whether accurate or not due to computer platforms may allow the individual who denies implications of physical symptoms to find inaccurate information which can reinforce illness denial. Such causal factors about illness denial exist in biological, psychological, and social realms and require more study. The public health issues caused by illness denial seriously increase morbidity and mortality when utilized. Delay in seeking treatment for the onset of acute cardiac symptoms exemplifies such an issue that limits lifesaving treatments. Rapid treatment for cardiac symptoms leads to improved outcomes. Nevertheless, the delay of getting to proper medical facilities continues despite major educational initiatives [13]. The median time between delay of getting treatment for cardiac symptoms ranges between 1.5 h and 6 h. Each 30 min delay of getting cardiac care increases mortality at 1 year after the index episode by 7.5%. Research shows patients may often wait to see if the chest discomfort abates or admitting to less trust in medical care [14].

Denial in oncology patients is common and may cause serious consequences of not pursuing recommended mammography or colonoscopy via rationalizations of no family history of such diseases. Avoidance of such testing can allow a nascent tumor to grow and metastasize. The use of denial in oncology is complicated, however, since it may allow hope for effect treatment in patients who have accepted their diagnosis and treatment regimens [15, 16]. Illness denial as a psychiatric disorder should be reserved for attitudes and behaviors that limit experiencing or recognizing symptoms and bodily signs that prevent necessary treatments which are realistically available for the patient.

There are limited data how to best treat illness denial in medical conditions except in the literature on informed consent or refusal of treatment in patients with addiction [17, 18]. Management of illness denial mandates developing a therapeutic alliance with the patient to understand how and why they denied both symptoms and treatment for their illness [19]. Patients often blame themselves when they finally seek care and physicians need not “rub it in” about the consequences they face due to such attitudes and behaviors if they finally accept treatment. If they continue to deny the need to medical intervention, it is useful to engage the family to help.

A number of clinimetric screening measures further help understand the patients and allow research into elements that “cause” such illness denial. These assessment tools are linked to various studies covered in this systematic literature review [1]. Management of illness denial requires more attention with strategies such as reframing or integrating aspects of well-being therapy into the treatment [20, 21]. These and other therapeutic measures may challenge such denial in an empathic manner.

This systematic review brings together a wealth of clinical information that strongly suggests illness denial in medical conditions to be included in the forthcoming DSM versions. Patients who use such denial to avoid perception of symptoms or signs or reframe them as a normal or a minor event are vulnerable to serious morbidity and mortality in many instances. By including this category in DSM illness denial will be coded as medical records that can be easily retrieved for research. This could hopefully aid in public health initiatives to urge appropriate medical screening parameters as well as suggest better psychiatric treatment for illness deniers. The most practical approach for DSM inclusion is to use the Illness Denial criteria in the Diagnostic Criteria for Psychosomatic Research (DCPR) as the basis for illness denial in medical conditions for future DSM manuals [22]. The DCPR is a reliable and valid method to diagnose illness denial in medical conditions [22–24]. It has been used in a variety of studies about illness denial which are described in this review [1]. In the current, DCPR illness denial in medical conditions contains 2 criteria: criterion A is the actual definition of denial of experiencing a physical disorder which requires treatment as a reaction to such symptoms as refusal to seek evaluation or comply with treatment. Criteria B denotes the patient has been provided with an adequate appraisal of the medical situation with an opportunity for discussion and clarification. Congruence with DSM criteria requires a criterion C “Not Better Explained by Another Disorder.” Cultural and religious issues can be discussed in text discussion of this category. In summary, this careful and systematic literature review adds a significant amount of information to strongly support such an addition to future DSM iterations.

Conflict of Interest Statement

Thomas N. Wise has no conflicts of interest to declare.

Funding Sources

No external funding was utilized.

Author Contributions

Thomas N. Wise conceived and wrote the entire manuscript.

Funding Statement

No external funding was utilized.