Does non‐strabismic amblyopia affect the quality of life of adults? Findings from a qualitative study

Abstract

Purpose While much is known about the psychosocial impacts of strabismus, little is known about the effects of non‐strabismic amblyopia on quality of life (QoL). The aim of this study was to explore the long‐term impacts of anisometropic amblyopia. Methods A phenomenological qualitative investigation was carried out on a sample of adults with anisometropic amblyopia. Subjects participated in in‐depth telephone interviews and described how their eye condition affected different aspects of their life. The interviews were audio‐recorded, transcribed verbatim and analysed iteratively to form emergent themes. Results Sixteen participants took part in the study (median age: 21.5 years; range: 18–36 years; 11 male and 5 female). Six themes emerged: (1) symptoms experienced by participants, (2) concerns and apprehensions, (3) emotional impacts, (4) activity limitations, (5) hassle and inconveniences and (6) economic and career implications. Symptoms reported by participants ranged from glare to difficulty concentrating. They were extremely concerned about the safety of their better eye and lived with several doubts and anxieties. Negative emotions such as grief and disappointment due to eye care negligence in childhood was apparent. Guilt and regretful feelings were present in those who did not comply with past treatment. Participants expressed several limitations in driving, reading, mobility (e.g., using stairs) and tasks requiring high resolution. Reported inconveniences associated with coping with their eye condition included having to travel across the country in search of a cure for their amblyopia. Economic impacts ranged from costs associated with accessing eye care and management to career choices being compromised. Conclusion Lived experiences of people with anisometropic amblyopia indicate that the QoL impacts are multifaceted and substantial, even in the absence of strabismus. The results have the potential to influence patient‐practitioner relationship by opening newer horizons to communication and care while managing adult amblyopes.

Amblyopia—A novel virtual round table to explore the caregiver perspective

“…Parents in our caregiver survey emphasised that the management of amblyopia can pose more of a burden on the child and family than the condition itself. 27,70,71 Similar to findings of previous studies, QoL implications of amblyopia typically relate specifically to its treatment, which can impact family life, social interactions or the ability to perform daily activities, as well as feelings and behaviour. 26 Consistent with our findings, Koklanis et al also found patching and glasses were associated with bullying and feelings of self-consciousness and embarrassment among children, 70 while Searle et al 71 reported that many parents also experience distress related to patching.…”

“…[23][24][25] Furthermore, the psychosocial and emotional impact of amblyopia can affect family relationships, social interactions, career choices and mental health. [26][27][28][29][30][31] Disease in the non-amblyopic eye can also have a significant impact on earnings and economic stability, 32 with amblyopic patients reported to express feelings of fear and concern regarding the safety of their better eye. 27 While there is limited research on the effect of anisometropic amblyopia on QoL, noticeable ocular misalignment in strabismic amblyopia is associated with negative social interactions and school performance, and an increased susceptibility to psychiatric diseases and depression.…”

“…[26][27][28][29][30][31] Disease in the non-amblyopic eye can also have a significant impact on earnings and economic stability, 32 with amblyopic patients reported to express feelings of fear and concern regarding the safety of their better eye. 27 While there is limited research on the effect of anisometropic amblyopia on QoL, noticeable ocular misalignment in strabismic amblyopia is associated with negative social interactions and school performance, and an increased susceptibility to psychiatric diseases and depression. 33,34 Parents of children with strabismus have also reported difficulties in establishing a relationship with their child, and have an increased susceptibility to depression or anxiety.…”

“…27 Patients felt there were limited treatment options available to them in adulthood, and expressed uncertainty about the real-life benefit of treatments. 27 Treating adults with anisometropic amblyopia is, however, gaining momentum, with recent studies demonstrating meaningful visual improvements, thus challenging the concept of a complete loss of visual processing plasticity beyond the critical period of visual development. [36][37][38] Although the gold standard treatment for amblyopia (which involves optical correction if indicated, followed by impairment of the better-seeing eye by occlusion with an eye patch or atropine impairment) 39,40 is most successful when implemented before 7 years of age, 41 there is growing evidence supporting the potential efficacy of emerging binocular therapies in both adults and children.…”

Adverse Influences of Nonstrabismic Amblyopia on Quality of Life of Teenagers in China

“…Therefore, it is essential to reevaluate whether the influence of amblyopia on HRQoL has altered by changes in clinical practice. A previous study demonstrated that nonstrabismic amblyopia influences the quality of life of adults [ 17 ]. Currently, few studies have evaluated perspective quality of life in adolescents with nonstrabismic amblyopia.…”