IT HAS LONG BEEN RECOGNIZED THAT EMOTIONAL

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1 Emotional Distress in Patients With Retinal Disease INGRID U. SCOTT, MD, MPH, OLIVER D. SCHEIN, MD, MPH, WILLIAM J. FEUER, MS, MARSHAL F. FOLSTEIN, MD, AND KAREN BANDEEN-ROCHE, PHD Accepted for publication Dec 21, From the Department of Ophthalmology, Bascom Palmer Eye Institute, University of Miami School of Medicine (Dr Scott and Mr Feuer), Miami, Florida; The Wilmer Eye Institute, Johns Hopkins University (Drs Schein and Bandeen-Roche), Baltimore, Maryland; and the Department of Psychiatry, New England Medical Center (Dr Folstein), Boston, Massachusetts. This work was supported in part by Research to Prevent Blindness, Inc, New York, New York. Reprint requests to Ingrid U. Scott, MD, MPH, Bascom Palmer Eye Institute, PO Box , Miami, FL 33101; phone: (305) ; fax: (305) ; PURPOSE: To investigate the prevalence of, and potential risk factors for, emotional distress among patients with retinal disease. DESIGN: Cross-sectional study. METHODS: Cases consisted of 86 consecutive patients at Wilmer Eye Institute Retinal Vascular Center. Fiftyone controls with normal visual acuity and no known ocular disease were frequency-matched to the cases by age, sex, and race. Subjects were interviewed using the Community Disability Scale, a functional status questionnaire, and the General Health Questionnaire, a questionnaire assessing emotional distress. RESULTS: The prevalence of probable (General Health Questionnaire score 4 or greater and less than 10) or definite (General Health Questionnaire score 10 or greater) emotional distress was 59.3% among ophthalmic patients and 2.0% among controls. There were significant relationships between emotional distress, as assessed by General Health Questionnaire score, and degree of 1) visual impairment, as assessed by weighted bilateral average logarithm of minimal angle of resolution (log- MAR), and 2) functional impairment, as assessed by Community Disability Scale score (P.001). Univariate analyses identified significant predictors of emotional distress: shorter duration of ocular disease (P.019), worse visual acuity (P.001), increased systemic comorbidities (P.001), and increased functional impairment (P <.001). Multiple regression analysis demonstrates that worse visual acuity, increased systemic comorbidities, and shorter duration of ocular disease each explain over 10% of the variability in General Health Questionnaire score (r , 0.12, and 0.11, respectively). Addition of Community Disability Scale score to the regression model eliminates the significance of visual acuity and systemic comorbidities; Community Disability Scale score explains nearly 30% of the variability in emotional distress, as assessed by General Health Questionnaire score (r ). CONCLUSIONS: Emotional distress is prevalent among patients with retinal disease; potential risk factors for emotional distress among such patients include shorter duration of ocular disease, worse visual acuity, increased systemic comorbidities, and increased functional impairment. (Am J Ophthalmol 2001;131: by Elsevier Science Inc. All rights reserved.) IT HAS LONG BEEN RECOGNIZED THAT EMOTIONAL stress accompanies visual loss. 1 4 However, most research in this domain has focused solely on blind individuals, and there is little information available concerning emotional distress among visually impaired (but not blind) individuals. The present study assesses the prevalence of, and potential risk factors for, emotional distress in a clinic-based series of patients with retinal disease. METHODS IN THIS CROSS-SECTIONAL STUDY, CASES CONSISTED OF 86 patients examined at the Wilmer Eye Institute Retinal Vascular Center during a 4-week period. Patients were consecutive after exclusion of new patients, patients already participating in other clinical trials, and patients whose appointments overlapped with those of subjects who were interviewed (approximately 10% of the total sample). Controls consisted of 51 individuals who accompanied patients. Controls were required to have no known ocular disease and to have a best-corrected visual acuity that measured 20/25 or better using a standard Snellen visual acuity chart. Controls were frequency-matched 5 to the cases by age ( 5 years), sex, and race. The questionnaires selected for this study were chosen because of specific features. The Community Disability BY ELSEVIER SCIENCE INC. ALL RIGHTS RESERVED /01/$20.00 PII S (01)

2 Scale 6 was used to assess patients functional status. The Community Disability Scale includes Activities of Daily Living, Instrumental Activities of Daily Living, and Mobility subscales. These subscales have been used in many diverse clinic settings as well as in general population surveys, and their validity and reliability have been demonstrated previously. 7 Approximately 5 minutes are required for administration of the Community Disability Scale. The General Health Questionnaire, 8 a questionnaire to assess emotional well-being, was used because of its utility as a screening instrument for emotional distress. Several studies have demonstrated a high correlation between General Health Questionnaire scores and psychiatric morbidity rates by psychiatric interviews In addition, the validity and reliability of this questionnaire have been assessed in a variety of settings The General Health Questionnaire consists of four subscales (somatic symptoms, anxiety and insomnia, social dysfunction, and severe depression) and can be administered in less than 5 minutes. The study was approved by the Johns Hopkins Committee on Clinical Investigations, and informed consent was obtained from each study participant. The Community Disability Scale and General Health Questionnaire were administered in that order by in-person interview by one trained interviewer. The participation rate for the interviews was 100%. Ophthalmologists, who were unaware of patients Community Disability Scale and General Health Questionnaire scores, performed complete ophthalmologic examinations on all cases. Best-corrected visual acuity, primary ocular diagnosis, duration of ocular disease, and demographic information were extracted from patients medical records. To assess nonophthalmic comorbidities, a health status survey adapted from the National Health and Nutrition Examination Surveys (NHANES) 16,17 was administered to each participant. Subjects were asked if they had any of 25 health conditions; for each comorbidity reported, the subject was asked to specify how much that condition interfered with his/her activities (that is, general functioning). A comorbidity score was then assigned to each of these responses (not at all 1; a little 2; a great deal 3). An overall comorbidity score for each patient was computed by summing the scores for each response. 18,19 Thus, the minimum possible comorbidity score was 0 and the maximum possible comorbidity score was 75. No attempt was made to rate severity of the comorbidities, except in terms of functional impact as graded by the participant. Previously published criteria were used to identify emotional disorders as follows: General Health Questionnaire less than 4, doubtful psychiatric morbidity; General Health Questionnaire score 4 or greater and less than 10, probable psychiatric morbidity; and General Health Questionnaire score 10 or greater, definite psychiatric morbidity. 20 Patients visual acuity status was summarized in terms of weighted bilateral average logmar (MAR numerator of visual acuity divided by denominator of visual acuity), with the better eye given a weight of 0.75 and the worst eye given a weight of Weighted bilateral average logmar 21 was used, because this summary score encompasses visual information from both eyes. Vision levels classified as count fingers, hand motion, light perception, and no light perception were assigned visual acuity values of 1.000/200, 0.500/200, 0.250/200, and 0.125/200, respectively. 18 The prevalence of probable or definite emotional distress among ophthalmic patients and among controls was calculated. To determine if there were differences in demographics and questionnaire scores among the subjects stratified by visual impairment, the controls and patients with mild, moderate, and severe visual impairment were compared using analysis of variance for continuous variables (results were confirmed using Kruskal-Wallis tests) and contingency table analyses for categorical variables. Tests for trend were performed for both continuous and categorical variables. To satisfy linearity and constant variance assumptions of the analyses, General Health Questionnaire and Community Disability Scale questionnaire scores were transformed by taking the square root function. 22 Forward stepwise linear regression analysis was used to investigate whether emotional distress was related to explanatory variables in this study (weighted bilateral average logmar, square root-transformed Community Disability Scale score, age, sex, race, comorbidity, and months since diagnosis of ocular disease). Because all control patients had minimal, if any, visual impairment, they were excluded from these analyses. All modeling was performed with the transformed variables. RESULTS PATIENTS WERE DIVIDED INTO THREE APPROXIMATELY equal-sized groups on the basis of the severity of their visual impairment: mild visual impairment (N 30),weighted bilateral average logmar better than 0.35 (Snellen equivalent, approximately 20/44); moderate visual impairment (N 28), weighted bilateral average logmar 0.35 to 0.80 (Snellen equivalents, approximately 20/44 to 20/125); and severe visual impairment (N 28), weighted bilateral average logmar worse than 0.80 (Snellen equivalent, approximately 20/125). The characteristics of the three visual impairment groups and the controls are shown in Table 1. There were no statistically significant differences, with or without trend tests, among the groups in terms of age, sex, race, systemic comorbidity, and months since diagnosis of ocular disease. There was a clinically meaningful linear trend in mean number of months since diagnosis of ocular disease VOL. 131, NO. 5 EMOTIONAL DISTRESS IN RETINAL DISEASE 585

3 TABLE 1. Patient Characteristics Cases P Value Test of Trend Controls Mild Moderate Severe Number of patients Mean age, years (SD) 59.9 (17.1) 58.1 (13.7) 66.3 (15.1) 63.5 (13.4).2* 0.9 Female (%) Black (%) Mean comorbidity score (SD) 4.6 (3.9) 5.5 (5.9) 6.0 (4.2) 6.4 (3.8).3* 0.1 Mean months since 21.4 (19.4) 26.3 (25.6) 43.0 (30.0).6* 0.3 diagnosis of ocular disease (SD) Primary cause of visual impairment AMD (%) DR (%) Other (%) Mean WMAR score (SD) (0.027) (0.105) (0.129) 1.31 (0.617) Mean CDS score (SD) 1.06 (2.46) 5.5 (7.07) 7.0 (6.07) (10.37).001* Mean GHQ score (SD) 0.8 (1.3) 5.9 (6.5) 7.1 (5.8) 10.0 (7.5).001* AMD age-related macular degeneration; CDS Community Disability Scale; DR diabetic retinopathy; GHQ General Health Questionnaire; WMAR weighted bilateral average logmar. *Analysis of variance, with analysis conducted on transformed variables. Test of linear trend across group means, with analysis conducted on transformed variables. Chi-square. Armitage test of trend in proportions. across the visual impairment tertiles consistent with a progression of disease severity with time among patients with age-related macular degeneration and diabetic retinopathy. Scores of the General Health Questionnaire are significantly different between cases and controls (P.0001). Trend-tests demonstrate that the scores are significantly associated with the level of visual acuity. For General Health Questionnaire score, in addition to a highly significant linear trend, there was a small, but statistically significant, departure from trend (P.02): 33.7% of cases and 0% of controls had definite emotional distress (P.001, Fisher s exact test); 22.1% of cases and 2.0% of controls had probable emotional distress (P.001, Fisher s exact test). Thus, the prevalence of probable or definite emotional distress was 55.8% among the ophthalmic patients, as compared with 2.0% among controls. Figure 1 displays the association between emotional distress, as assessed by General Health Questionnaire score, and weighted bilateral visual acuity. There is a highly positive significant Pearson correlation between weighted bilateral average logmar (larger weighted bilateral average logmar values indicate worse visual acuity) and emotional distress, as measured by General Health Questionnaire score (P.001). Approximately 13% of the variability in General Health Questionnaire score may be explained by weighted bilateral average logmar. Figure 2 displays the association between emotional distress, as assessed by General Health Questionnaire score, and functional impairment, as assessed by Community Disability Scale score. There is a highly positive significant Pearson correlation between Community Disability Scale score (higher Community Disability Scale scores indicate increased functional impairment) and emotional distress, as measured by General Health Questionnaire score (P.001). Approximately 20% of the variability in General Health Questionnaire score may be explained by Community Disability Scale score. Results of univariate analyses displayed in Tables 2 and 3 demonstrate that, among the patients in the current study, gender, race, ocular diagnosis, and age are not significant predictors of emotional distress, as assessed by General Health Questionnaire score. Shorter duration of ocular disease, worse visual acuity, increased systemic comorbidities, and increased functional impairment are significantly associated with increased emotional distress (all P values.019 or less). Multiple regression analysis demonstrates that after controlling for other variables, weighted bilateral average logmar, systemic comorbidities, and months since ocular diagnosis each explain a little over 10% of the variability in General Health Questionnaire score (Table 4). Table 5 demonstrates that inclusion of the Community Disability Scale score eliminates the significance of weighted bilat- 586 AMERICAN JOURNAL OF OPHTHALMOLOGY MAY 2001

4 FIGURE 1. Scatterplot demonstrating association between visual acuity and emotional distress after data transformation (weighted average logmar [where MAR indicates the numerator of visual acuity divided by denominator of visual acuity] versus the square root of the General Health Questionnaire [GHQ] score) and after adjusting for age, sex, race, comorbidity, and months since diagnosis of ocular disease. (Bottom) General Health Questionnaire score 4 or less (no emotional distress). (Middle) General Health Questionnaire score 5 to 9 (probable emotional distress). (Top) General Health Questionnaire score 10 or greater (definite emotional distress). Among patients with retinal disease, r , P.001. FIGURE 2. Scatterplot demonstrating association between functional impairment (as assessed by Community Disability Scale [CDS] score) and emotional distress (as assessed by General Health Questionnaire [GHQ] score) after square-root transformation of both scores, and after adjusting for age, sex, race, comorbidity, and months since diagnosis of ocular disease. (Bottom) General Health Questionnaire score 4 or less (no emotional distress). (Middle) General Health Questionnaire score 5 to 9 (probable emotional distress). (Top) General Health Questionnaire score 10 or greater (definite emotional distress). Among patients with retinal disease, r , P.001. eral average logmar and systemic comorbidities in predicting General Health Questionnaire score; this suggests that the influence of decreased vision and systemic comorbidities in explaining General Health Questionnaire score (emotional distress) is accounted for by patients Community Disability Scale score (functional impairment). In this multiple regression model, Community Disability Scale score explained nearly 30% of the variability in General Health Questionnaire score. Months since ocular diagnosis remained significant after inclusion of Community Disability Scale score in the model, and there is trend toward increased emotional distress in Caucasian patients. DISCUSSION OUR RESULTS DEMONSTRATE THAT EMOTIONAL DISTRESS is prevalent among patients with retinal disease (a companion article presents further investigation of the same study population with regard to visual hallucinations). 23 The percentage of patients with a General Health Questionnaire score indicating the presence of definite emotional distress is higher than that found in a study of severely medically ill hospitalized patients (43.9% male, mean age 55.0 years) at the Johns Hopkins Hospital and of outpatients (43.6% male, mean age 51.9 years) scheduled TABLE 2. Association Between Categorical Patient Characteristics and General Health Questionnaire Score Among Patients With Retinal Disease Mean (SD) General Health Questionnaire Score P Value* Gender.080 Male 5.9 (6.0) Female 8.5 (7.1) Race.38 African American 6.5 (6.4) Caucasian 8.0 (6.9) Ocular diagnosis.78 Age-related macular degeneration 7.4 (6.6) Diabetic retinopathy 7.9 (6.4) Other 7.5 (7.9) *Analyses conducted on square-root transformed GHQ score. Two-sample t test. One-way analysis of variance. for audiological evaluation at the Johns Hopkins Hearing and Speech Clinic. 16 Although direct comparisons of our study population with these populations may not be valid given differences in demographic characteristics, this in- VOL. 131, NO. 5 EMOTIONAL DISTRESS IN RETINAL DISEASE 587

5 TABLE 3. Correlation Between Continuous Patient Characteristics and General Health Questionnaire Score Among Patients With Retinal Disease Variable Pearson s r P value* Age Months since diagnosis of ocular disease WMAR Systemic comorbidities Community Disability Scale score *Analyses conducted on square-root transformed General Health Questionnaire score. WMAR weighted bilateral average logmar, where MAR equals the numerator of visual acuity divided by the denominator of visual acuity (the better eye is given a weight of 0.75 and the worst eye is given a weight of 0.25). Analyses conducted on square-root transformed Community Disability Scale score. TABLE 4. Multiple Linear Regression Analysis* of Emotional Distress With Demographic Variables, Bilateral Vision, and Comorbidities Among Patients With Retinal Disease (Total r ) Variable (Standard Error) P Value Partial Correlation Squared WMAR (0.210) Systemic comorbidities (0.026) Months since ocular diagnosis (0.003) *Variables not included from Tables 2 and 3 were not significant. WMAR weighted bilateral average logmar, where MAR equals the numerator of visual acuity divided by the denominator of visual acuity (the better eye is given a weight of 0.75 and the worst eye is given a weight of 0.25). formation is consistent with results of the current study, which demonstrates that vision loss represents a significant risk factor for emotional distress. Interventions targeted at these emotional manifestations of vision loss may be important in providing optimal care to the visually impaired. The fact that shorter duration of ocular disease is significantly associated with emotional distress suggests that patients may adapt to their vision loss in such a way that, over time, lessens the associated emotional distress. Because functional impairment (as assessed by Community Disability Scale score) explains nearly 30% of the variability in emotional distress (as assessed by General Health Questionnaire score), interventions designed to maximize the level of functioning of visually impaired patients, such TABLE 5. Multiple Linear Regression Analysis of Emotional Distress With Demographic Variables, Bilateral Vision, Comorbidities, and Community Disability Scale Among Patients With Retinal Disease (Total r ) Variable (Standard Error) P Value Partial Correlation Squared CDS (0.220) Months since ocular (0.003) diagnosis Caucasian (0.280) CDS analyses conducted on square-root transformed Community Disability Scale score. as low-vision services, 24 may not only improve patients functional status, but may also be associated with improvement in patients emotional distress. In other cases, emotional distress may lead to increased functional impairment; in such cases, interventions designed to alleviate patients emotional distress, such as support groups, may be associated with improvement in patients functional status. Several limitations of the study should be recognized. First, visual acuity was the only objective measure of vision used. However, this measure did provide a standardized, feasible way to assess whether the instruments were at all sensitive to vision. Second, our study was a clinic-based series and, therefore, susceptible to local referral biases. However, it should be noted that we included cases with a spectrum of visual impairment. Moreover, controls were included for comparison purposes. Third, we did not have a group of patients with extreme bilateral visual impairment. However, our group of patients represents the type of patients likely to be recruited in clinical trials. A cross-sectional study, such as the current investigation, can establish correlation and association, but not causality. We have chosen to regard emotional distress, as assessed by the General Health Questionnaire, as the dependent variable and patients functional status, as assessed by the Community Disability Scale questionnaire, as an independent variable. However, significant emotional distress may cause functional impairment and perhaps even decrease performance on a psychophysical test, such as visual acuity. Moreover, emotional distress may influence the answers to questions on the Community Disability Scale. This is an inherent limitation of the questionnaire methodology. The goal of practicing physicians is to provide care that maximizes the quality of life of their patients. Ophthalmologists need to be aware that patients with visual impairment are at risk for significant levels of emotional distress. Recognition of the presence and importance of 588 AMERICAN JOURNAL OF OPHTHALMOLOGY MAY 2001

6 emotional manifestations of visual impairment should lead to consideration of referral of such patients to appropriate health-care professionals or other sources of emotional support. ACKNOWLEDGMENTS The authors gratefully acknowledge Drs Neil Bressler, Susan Bressler, Daniel Finkelstein, and Andrew Schachat for their assistance and support. REFERENCES 1. Cholden L. Some psychiatric problems in the rehabilitation of the blind. Bull Meninger Clin 1954;18: Blank HR. Psychoanalysis and blindness. Psychoanal Q 1957;26: Adams GL, Pearlman JT, Sloan SH. Guidelines for the psychiatric referral of visually handicapped patients. Ann Ophthalmol 1971;3: Rakes SM, William RH. Psychologic management of loss of vision. Can J Ophthalmol 1982;17: Rothman KJ. Modern epidemiology. Boston: Little, Brown, 1986: Basset SS, Folstein MF. Cognitive impairment and functional disability in the absence of psychiatric diagnosis. Psych Med 1991;21: Kane RA, Kane RL. Assessing the elderly a practical guide to measurement. Lexington, MA: Lexington Books, D.C. Heath, the Rand Corporation, Goldberg D. Manual of the general health questionnaire. Windsor, England: NFER Publishing, Tennant C. The general health questionnaire a valid index of psychologic impairment in Australian population. Med J Australia 1977;2: Henderson S, Byrne DG, Duncan-Jones P, et al. Social bonds in the epidemiology of neurosis: a preliminary communication. Br J Psychiatry 1978;132: Goldberg DP. The detection of psychiatric illness by questionnaire. London, Oxford: University Press, Goldberg DP, Cooper B, Eastwood MR, et al. A standardized psychiatric interview for use in community surveys. Br J Prev Soc Med 1970;24: Goldberg D, Rickels K, Downing R, et al. A comparison of two psychiatric screening tests. Br J Psychiatry 1976;129: Goldberg DP, Blackwell B. Psychiatric illness in general practice: a detailed study using a new method of case identification. Br Med J 1970;2: Patrick DL, Peach H. A sociomedical approach to disablement. Oxford: Oxford University Press, Cornoni-Huntley JC, Huntley RR, Feldman JJ. Health status and well-being of the elderly. Oxford: Oxford University Press, Harris T, Woteki C, Briefel RR, Kleinman JC. NHANES III for older persons: nutrition content and methodological considerations. Am J Clin Nutr 1989;50: Scott IU, Schein OD, West S, et al. Functional status and quality of life measurement among ophthalmic patients. Arch Ophthalmol 1994;112: Parrish RK II, Gedde SJ, Scott IU, et al. Visual function and quality of life among patients with glaucoma. Arch Ophthalmol 1997;115: Singerman B, Riedner E, Folstein M. Emotional disturbance in hearing clinic patients. Br J Psychiatry 1980;137: Bailey IL, Lovie JE. New design principles for visual acuity letter charts. Am J Optom Physiol Optics 1976;53: Box GEP, Hunter WG, Hunter JS. Statistics for experimenters: an introduction to design, data analysis, and model building. New York: John Wiley & Sons, 1978: Scott IU, Schein OD, Feuer WJ, Folstein MF. Visual hallucinations in patients with retinal disease. Am J Ophthalmol 2001;131: Scott IU, Smiddy WE, Schiffman J, Feuer WJ, Pappas CJ. Quality of life of low-vision patients and the impact of low-vision services. Am J Ophthalmol 1999;128: The full-text of AJO is now available online at Authors Interactive, currently available in limited form, is undergoing an upgrade. VOL. 131, NO. 5 EMOTIONAL DISTRESS IN RETINAL DISEASE 589