KEY CONCEPTS
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Keratoconus can have a psychological impact due to its onset during the formative years of adolescence and a decrease in quality of life, even in the presence of good visual acuity.
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Although the anecdotal concept of a “keratoconic personality” exists, characterized by a highly anxious, diffident, and suspicious patient, studies have failed to substantiate a distinct personality profile.
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Patients with keratoconus tend to display maladaptive coping mechanisms that may interfere with a productive patient-provider relationship.
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Providers should anticipate the altered psyche, maladaptive behaviors, and high disease burden of keratoconus when counseling these patients.
Introduction
As a chronic progressive disease that develops during the formative adolescent years, keratoconus can have a significant impact on the psyche, so much so that many physicians characterize patients with keratoconus as having a distinct personality profile. The psychological effects of keratoconus, in turn, may influence patients’ interactions with their healthcare providers and ultimately their treatment outcomes. Ophthalmologists should account for the altered psychology in keratoconic patients when tailoring their treatment approach. This chapter will review the existing literature on the association between keratoconus and personality traits, quality of life, and mental health.
Psychological Roots of Keratoconus
The psychological impact of keratoconus stems largely from its onset during adolescence and its severe impact on quality of life.
ADOLESCENT ONSET
Keratoconus develops between the ages of 12 and 39 in 94% of patients and is a disease of adolescence and young adulthood. Adolescence is the major life stage for the formation of self-image, social identity, and independence. The development of a chronic, progressive, and visually debilitating illness during adolescence can have a devastating emotional impact on young adults who are otherwise healthy and have little interaction with healthcare providers. In addition, developing a disability during this crucial time of psychological maturation can fundamentally alter personality and behavioral traits.
QUALITY OF LIFE IMPACT
Patients with keratoconus experience a significant decrease in quality of life on all fronts, on average scoring similar to patients with advanced age-related macular degeneration on validated questionnaires. , This impact is independent of visual acuity. Keratoconic patients report a negative impact on their quality of life even if their best corrected acuity is 20/20. This may be explained in part by the psychological burden of disease; many patients do not fully understand the good visual prognosis of keratoconus with appropriate treatment and may harbor irrational fears of future blindness.
Nevertheless, keratoconus can limit patient visual function, well-being, and work capacity. Patients with keratoconus have scored lower than controls on all visual function and well-being scales on the National Eye Institute Visual Function Questionnaire (NEI-VFQ) and reported elevated anxiety and frustration with their sight. Almost all patients report that keratoconus has had some impact on their lives, with over a third characterizing the impact as moderate or severe. Baseline data from the Collaborative Longitudinal Evaluation of Keratoconus (CLEK) study reveal that 1.4% of patients changed jobs, 2.1% received disability compensation, and 11.5% missed work due to keratoconus. Quality of life continues to decline over time, especially with disease progression and continued visual decline.
Definitive treatments such as corneal collagen cross-linking and corneal transplantation can diminish the psychological burden of possible disease progression and boost quality-of-life scores. Cross-linking and combination cross-linking photorefractive keratectomy treatments improve quality-of-life scores. , Along with improved visual function, patients who undergo cross-linking report improved general health and mental health, with decreased anxiety levels 1 year after the procedure. Patients with keratoconus also report high satisfaction and improved quality of life after corneal transplantation, especially when delivered with comprehensive patient education.
Keratoconus and Personality
Personality traits in keratoconus have been characterized by a small body of literature consisting primarily of physician surveys, case reports, and case-control studies. Over the years, the altered psychology of patients with keratoconus has colored physician-patient interactions, leaving the impression of a “keratoconic personality” within the ophthalmology community. The notional keratoconic personality is generally characterized by high anxiety, low self-confidence, compulsion, and suspicion. Evidence on the existence of a distinct keratoconic personality is conflicting, and review of the literature largely fails to establish a clear association between keratoconus and personality.
PHYSICIAN SURVEYS
In attitudinal surveys, ophthalmologists well-versed with keratoconus have characterized patients as less self-confident, less friendly, and poorly adjusted. A trend toward the additional descriptors of less insightful, less self-controlled, and more emotionally labile is seen.
CASE-CONTROL STUDIES—CONTROLS WITHOUT EYE DISEASE
Personality studies of keratoconus vary widely in the selection of control patients, the questionnaire or assessment tool used, and their conclusions ( Table 12.1 ). Control groups have ranged from healthy subjects without eye disease, to patients with chronic nonkeratoconus eye disease, to patients with high refractive error. Study results must be interpreted in the context of control group selection, to parse out personality traits associated specifically with keratoconus as opposed to with chronic eye disease in general.
| Authors | Personality Assessment Tool Used | Study Population | Summary of Findings | ||
|---|---|---|---|---|---|
| Mannis et al. | Millon Clinical Multiaxial Inventory (MCMI) | 52 patients with keratoconus, 35 patients with chronic eye disease, 32 patients without eye disease | Both patients with keratoconus and patients with chronic eye disease exhibited personality deviations compared with normal controls a | ||
| Cooke et al. | Eysenck Personality Questionnaire, Maudsley Obsessive-Compulsive Inventory | 118 patients with keratoconus, 75 patients with bilateral high myopia | No difference in personality dimensions or obsessionality | ||
| Gorskova et al. | Brief Multifactorial Questionnaire for Personality Examination (BMQP) | 84 patients with keratoconus, 63 normal controls a | Patients with keratoconus showed increased psychasthenia and schizophrenia | ||
| Swartz et al. | Minnesota Multiphasic Personality Inventory (MMPI) | 28 patients with keratoconus, 16 patients with HSV keratitis | Patients with keratoconus were more likely to have abnormal clinical scale elevations | ||
| García-Monlléo and Melgosa | 16 Personality Factor Questionnaire of the Institute for Personality and Ability Testing (16 PF) | 22 patients with keratoconus, 19 patients with retinitis pigmentosa | Patients with keratoconus had abnormal scores for mental capacity, ego strength, guilt proneness, submissiveness, and praxernia | ||
| Moreira et al. | Short Form 36 Health Survey (SF-36), Millon Index of Personality Styles Revised (MIPS) | 68 patients with keratoconus, 52 normal controls a | Patients with keratoconus were more pessimistic, scores improved with successful contact lens wear | ||
| Giedd et al. | Millon Behavioral Health Inventory (MBHI) | 153 patients with keratoconus, 153 normal controls a | Patients with keratoconus scored lower on the respectful coping style scale |
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