Constructing country-specific quality-of-life item banks for adults with amblyopia and strabismus in Australia and India.

CLINICAL RELEVANCE: Understanding the quality-of-life (QoL) impacts of amblyopia and strabismus from the perspectives of patients using validated tools would enable eye care practitioners to provide better clinical management. BACKGROUND: Item banks are advanced patient reported outcome measures with several advantages over traditional QoL assessment. This paper describes the development of amblyopia and strabismus-specific QoL item banks for two distinct country settings: Australia (high-income) and India (low-middle income) and examines the unique QoL issues. METHODS: Using a bottom-up systematic approach, the content for the item banks was identified from three sources: existing self-report amblyopia and strabismus questionnaires (n = 22), qualitative literature (n = 5) and prospective qualitative studies in Australia (n = 49) and India (n = 30). The initial item pool underwent item evaluation, construction, and pre-testing to form optimal sets of representative items. The Indian item pools were first developed in English and translated into Hindi and Tamil using a rigorous translation protocol. The differences in QoL experiences that emanated from the qualitative studies and the number of common and unique items in the final item pools were compared. RESULTS: The final Australian and Indian item pools comprised 312 and 277 items, respectively, covering 11 QoL domains. Two hundred and sixty items (79%) were common to both countries, and 21% were unique. Of the 11 domains, except for activity limitation (64.5%), visual symptoms (73.3%) and emotional impact (75.5%) domains, all other domains had over 80% of items common to both countries. The unique items can be attributed to differences in QoL experiences, individual perspectives, culture, lifestyle, country setting and health systems. CONCLUSION: Amblyopia has a multifaceted impact on QoL irrespective of the country settings. Despite a huge overlap in QoL impacts between Australia and India, both countries had unique issues, especially activity limitations. The study developed comprehensive, country-specific item pools for Australia and India.

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

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.

Refractive error and vision-related quality of life in South Indian children.

PURPOSE: To understand the vision-related quality of life (QoL) of schoolchildren with uncorrected refractive error (URE). METHODS: A snapshot qualitative research design and homogeneous sampling strategy was adopted. Thirty-one, 27, and 22 eye care practitioners, children, and teachers participated in four, three, and two focus group discussions, respectively. The participants were recruited from various parts of Chennai, India. The discussions were audio recorded, transcribed, coded, and analyzed. RESULTS: Eight themes emerged: complaints and symptoms of children with URE, vision-related activity limitation, coping strategies, psychological impact, social impact, the perceived difference after first time refractive correction, reasons for refractive error remaining uncorrected, and the significant amount of refractive error. CONCLUSIONS: The study gives a holistic view of the vision-related QoL of children with URE by demonstrating the difficulties and problems that they face in their day-to-day life and also by describing the perceived difference in QoL after wearing refractive correction.

Parents' awareness and perception of children's eye diseases in Chennai, India.

PURPOSE: To report parents' awareness and perception of eye diseases in their children. METHODS: Thirty-five parents and 16 eye care practitioners either participated in in-depth interviews or focus group discussions. Data on parents' awareness and perception were collected using interview guides with unstructured questions. Data were transcribed, familiarized, and coded, and themes were generated. Redundancy was considered as the end point of data collection. RESULTS: The study results conveyed that parents were aware of common eye problems like refractive error, squint, and cataract, except for amblyopia, in their children. The causative factors for ocular diseases were not well understood by parents. The parents' perception was that eye problems can be treated with food, such as eggs or carrots, and exercises. Most of the parents perceived squint as a sign of good luck and spectacle correction as a social stigma. CONCLUSIONS: One of the prerequisites of health-seeking behavior is knowledge of disease and their symptoms, which seems to be lacking in parents of children. The findings of this study suggest that programs to increase awareness of the causative factors, spectacle wearing, and on the harmful effects of squint should be conducted.

Factors affecting eye care-seeking behavior of parents for their children.

PURPOSE: Most of the causes of childhood blindness are either treatable or preventable. Eye care-seeking behavior (ESB) of parents for their children plays a pivotal role in reducing this problem. This study was done because there was a sparsity of literature in this context and with a view to help eye care professionals plan better programs and to identify factors facilitating and/or hindering ESB of parents for their school-going children in an urban area. METHODS: This study adopted a qualitative snapshot narrative study design. In-depth interviews and focus group discussions were conducted in areas of Chennai with parents and eye care professionals selected through stratified purposive sampling. Parents were based on those who sought care and did not seek care after a school eye screening program and on their socioeconomic status. Data were transcribed to English, familiarized, and inductive coded, and themes were formed. Redundancy was considered as end point of data collection. RESULTS: Two focus group discussions and 11 in-depth interviews were conducted. Squint, redness or watering of eyes, eye irritation, headache, family history of ocular diseases, severity, and repetitiveness of symptoms facilitate parents seeking eye care for their wards/children. Economic status was an important barrier reported to affect the ESB. Logistic factors like taking appointment with doctor, taking leave from work, transport, and traveling distance were noted. CONCLUSIONS: This study shows the facilitating factors and barriers for ESB of the Chennai urban parents for their wards. The results suggest that efforts needed to be put to overcome the barriers through planned awareness programs.