Profound vision loss impairs psychological well-being in young and middle-aged individuals.

PurposeThe aim of this study was to evaluate the effects of profound vision loss on psychological well-being in adolescents, young adults, and middle-aged adults with regard to mood, interpersonal interactions, and career-related goals. In addition, we assessed the significance of the resources that may be used to enhance psychological well-being in cases of profound vision loss, and in particular, examined the utility of low vision aids and the role of the ophthalmologist as a provider of emotional support.MethodsA questionnaire was issued to individuals aged 13-65 years with profound vision loss resulting from Leber's hereditary optic neuropathy (LHON). Depression prevalence was evaluated with questions regarding major depressive disorder symptomatology. Participants appraised the effects of vision loss on their interpersonal interactions and career goals by providing an impact rating (IR) on a 21-point psychometric scale from -10 to +10. Social well-being index was defined as the average of interpersonal IR and career IR. Subjects were additionally asked about the use of low vision aids and sources of emotional support.ResultsA total of 103 participants (mean age =26.4±11.2 years at LHON diagnosis; mean ± standard deviation) completed the questionnaire. Nearly half (49.5%) met the depression criteria after vision loss. Negative impacts on interpersonal interactions (median IR = -5) and career goals (median IR = -6) were observed; both ratings were worse (P<0.001) for depressed versus nondepressed subjects. Older age at diagnosis corresponded to higher depression prevalence and increased incidence of negative interpersonal IR and career IR. Sixty-eight percent of subjects used electronic vision aids; controlling for age, social well-being index was higher among these individuals than for those who did not use electronic aids (P=0.03). Over half of the participants (52.4%) asserted that they derived emotional support from their ophthalmologist.ConclusionProfound vision loss in adolescents, young adults, and middle-aged adults is associated with significant negative psychological and psychosocial effects, which are influenced by age and use of electronic vision aids. Ophthalmologists, in addition to managing vision loss, may serve an important role in the emotional adaptation of these patients

LHON Genealogy Project - Identifying, Informing and Educating Maternal Relatives

LHON patients often wish to know if any of their maternal ancestors had vision loss, and would like to inform living maternal relatives about LHON. However, they lack the knowledge of how to conduct a genealogical search, as well as how to communicate this sensitive genetic information. The patient advocacy group LHON Project at UMDF created the LHON Genealogy Project to fill that knowledge gap

An Epidemiological Study of LHON Using a Large International Sample of Affected Individuals

Leber's hereditary optic neuropathy (LHON) is the most common inherited mitochondrial disease. It results in acute/subacute, painless, profound loss of central and color vision. The current literature reports males as 4-5 times more likely than females to be affected by LHON, and that symptom onset occurs during late teen/young adult life. As a result, LHON is usually called a "young man's disease." However, this may be a self-fulfilling prophecy, with underdiagnosis of females, older adults and children. We analyzed the epidemiology of LHON using a large international database of people affected by LHON

An Epidemiological Study of LHON Using a Large International Sample of Affected Individuals

Leber's hereditary optic neuropathy (LHON) is the most common inherited mitochondrial disease. It results in acute/subacute, painless, profound loss of central and color vision. The current literature reports males as 4-5 times more likely than females to be affected by LHON, and that symptom onset occurs during late teen/young adult life. As a result, LHON is usually called a "young man's disease." However, this may be a self-fulfilling prophecy, with underdiagnosis of females, older adults and children. We analyzed the epidemiology of LHON using a large international database of people affected by LHON

Profound vision loss impairs psychological well-being in young and middle-aged individuals.

PurposeThe aim of this study was to evaluate the effects of profound vision loss on psychological well-being in adolescents, young adults, and middle-aged adults with regard to mood, interpersonal interactions, and career-related goals. In addition, we assessed the significance of the resources that may be used to enhance psychological well-being in cases of profound vision loss, and in particular, examined the utility of low vision aids and the role of the ophthalmologist as a provider of emotional support.MethodsA questionnaire was issued to individuals aged 13-65 years with profound vision loss resulting from Leber's hereditary optic neuropathy (LHON). Depression prevalence was evaluated with questions regarding major depressive disorder symptomatology. Participants appraised the effects of vision loss on their interpersonal interactions and career goals by providing an impact rating (IR) on a 21-point psychometric scale from -10 to +10. Social well-being index was defined as the average of interpersonal IR and career IR. Subjects were additionally asked about the use of low vision aids and sources of emotional support.ResultsA total of 103 participants (mean age =26.4±11.2 years at LHON diagnosis; mean ± standard deviation) completed the questionnaire. Nearly half (49.5%) met the depression criteria after vision loss. Negative impacts on interpersonal interactions (median IR = -5) and career goals (median IR = -6) were observed; both ratings were worse (P<0.001) for depressed versus nondepressed subjects. Older age at diagnosis corresponded to higher depression prevalence and increased incidence of negative interpersonal IR and career IR. Sixty-eight percent of subjects used electronic vision aids; controlling for age, social well-being index was higher among these individuals than for those who did not use electronic aids (P=0.03). Over half of the participants (52.4%) asserted that they derived emotional support from their ophthalmologist.ConclusionProfound vision loss in adolescents, young adults, and middle-aged adults is associated with significant negative psychological and psychosocial effects, which are influenced by age and use of electronic vision aids. Ophthalmologists, in addition to managing vision loss, may serve an important role in the emotional adaptation of these patients