Phantom Eye Syndrome: Patient Experiences after Enucleation for Uveal Melanoma

Abstract

Purpose: Patients undergoing enucleation for uveal melanoma need to be informed of the possibility of phantom eye syndrome (PES). The number with uveal melanoma in PES studies has been small. Aims were to: (1) determine the prevalence, symptoms, and characteristics of PES and to test associations of PES symptoms with sociodemographic and clinical characteristics; (2) examine the interrelatedness of PES symptoms; and (3) explore the emotional valence of PES and the relationship to anxiety and depression.

Design: Cross-sectional questionnaire.

Participants: Patients (n = 179) with uveal melanoma enucleated 4 to 52 months previously.

Methods: Questionnaire on PES. Responses to a routine audit of mood obtained from clinical records.

Main outcome measures: Patients were asked about 3 symptoms: pain, visual sensations, and a feeling of seeing through the removed eye. Mood was assessed by the Hospital Anxiety and Depression Scale.

Results: Of 179 respondents, 108 (60.3%) experienced symptoms: 86 reported (48%) visual sensations, 50 reported (28%) seeing, and 42 reported (23%) pain; 14 (7.8%) reported all 3 symptoms. At the time of the questionnaire, 31 (17%) experienced 1 or more symptoms daily. Women were more likely to report pain (odds ratio [OR], 2.18; 95% confidence interval [CI], 1.08-4.40). Younger patients at enucleation were more likely to report pain (t = 4.13; degrees of freedom (df), 177; P < 0.001) and visual sensations (t = 2.11; df, 177; P < 0.05). Patients studied sooner after enucleation were more likely to report seeing (Mann-Whitney U, 2343; P < 0.05). Pain and seeing were intercorrelated (chi-square, 5.47; Φ = 0.18; df, 1; P < 0.05), pain with visual sensations (chi-square, 3.91; Φ = 0.15; df, 1; P < 0.05) and seeing with visual sensations (chi-square, 34.22; Φ = 0.45; df, 1; P < 0.001). Twenty of 108 patients (18.5%) found symptoms disturbing, and 21 of 108 (19.4%) pleasurable. Patients reporting pain were more anxious (OR, 3.53; 95% CI, 1.38-9.03) and depressed (OR, 13.26; 95% CI, 3.87-46.21).

Conclusions: Patients should be informed of PES symptoms. Pain may indicate anxiety or depression; this needs research to determine cause and effect.