Psychosocial distress associated with disfiguring eye conditions

Abstract

Purpose of study Visible disfigurement is associated with a range of psychosocial difficulties; however, the problems encountered by patients with eye conditions are under-researched. This study aimed to establish the extent and type of psychosocial distress in this patient population, and to explore the extent to which patients' needs are currently met. Method Standardised measures (anxiety, depression, appearance-related distress, and quality of life) and a semistructured interview (exploring individual experiences and satisfaction with care) were administered to 153 consecutive attenders at outpatient eye clinics in three different hospitals. Responses were analysed using descriptive statistics, multiple regression, and cluster analyses. Results Between 10 and 49% of the patient sample scored unfavourably on standardised measures in comparison with normative values. Cluster analyses revealed that more distressed patients typically exhibited higher levels of anxiety, depression, social anxiety, self-consciousness, and social avoidance. Quality of life scores were also less favourable. Distressed patients felt less well informed, less involved in their treatment, and less well supported in the clinic setting. Variability within the sample was high; however, the effects of the cause and duration of the condition were not significantly related to distress. Clinic staff identified a variety of constraints to meeting patients' need, including patient numbers, the lack of appropriate training, and the lack of referral possibilities. Conclusions A considerable proportion of patients with disfiguring eye conditions experience high levels of psychosocial distress. Several options exist for ways in which patients' needs might more effectively be met within the constraints currently facing care providers.

Appearance concerns in ophthalmic patients

“…Scores on the DAS24 suggest that participants were experiencing distress and dysfunction in relation to their appearance, with scores higher than that of the general population 17 but lower than previous studies of patients attending ophthalmic outpatient clinics. 1,18 Interestingly, nearly 40% of participants reported levels of distress and dysfunction in relation to their appearance that were higher than population norms. This confirms previous findings in ophthalmic outpatients with disfiguring eye disease 1 and suggests that this is a pervasive issue for patients, which could be an important motivating factor for consulting with ophthalmologists and surgeons.…”

“…Similarly, although mean scores for anxiety and depression suggest that many participants were in the normal range, these mean scores were higher than that of a non-clinical sample, 19 and similar to those of preoperative strabismus patients 18 but lower than previous reports of other ophthalmic outpatient clinics dealing disfiguring disease. 1,20 Although the majority of participants fell below the clinical cut-off scores on the HADS, over 22% of the population displayed 'caseness' levels of anxiety. This is slightly lower than previously reported 1 but is nevertheless indicative of a high level of unmet need in this population.…”

“…1 The psychosocial impact of disfiguring eye conditions has been well documented, with 10-45% of outpatients experiencing clinical anxiety, between 3 and 18% clinical depression, and between 45 and 46% raised levels of appearance-related distress and social avoidance. 1 Approximately 80% of patients with strabismus have been found to attribute problems in their personal life to their squint, with all patients adversely affected by the 'cosmetic blemish of squint' and reporting problems making and maintaining friends.…”

“…1 The psychosocial impact of disfiguring eye conditions has been well documented, with 10-45% of outpatients experiencing clinical anxiety, between 3 and 18% clinical depression, and between 45 and 46% raised levels of appearance-related distress and social avoidance. 1 Approximately 80% of patients with strabismus have been found to attribute problems in their personal life to their squint, with all patients adversely affected by the 'cosmetic blemish of squint' and reporting problems making and maintaining friends. 2,3 Avoidance, concealment, and behaviours indicating self-consciousness such as reduced eye contact, eye rubbing, abnormal head posture, dark glasses, staying at home, and avoiding situations that bring attention to their eye have also been described.…”

“…Higher levels of depression were related to a greater worry about appearance and lower perceived social support. 1 This study aims to take this work further by using a range of validated psychosocial measures to identify the psychosocial and appearance-related concerns of a range of disfiguring ophthalmic conditions. The variables included in this study aim to extend previous work, by measuring a range of psychological, as well as social and demographic factors that may predict psychological adjustment.…”