The development of a glaucoma-specific health-related quality of life item bank supporting a novel computerized adaptive testing system in Asia

Abstract

Background A glaucoma-specific health-related quality of life (HRQoL) item bank (IB) and computerized adaptive testing (CAT) system relevant to Asian populations is not currently available. We aimed to develop content for an IB focusing on HRQoL domains important to Asian people with glaucoma; and to compare the content coverage of our new instrument with established glaucoma-specific instruments. Methods In this qualitative study of glaucoma patients recruited from the Singapore National Eye Centre (November 2018-November 2019), items/domains were generated from: (1) glaucoma-specific questionnaires; (2) published articles; (3) focus groups/semi-structured interviews with glaucoma patients (n = 27); and (4) feedback from glaucoma experts. Data were analyzed using the constant comparative method. Items were systematically refined to a concise set, and pre-tested using cognitive interviews with 27 additional glaucoma patients. Results Of the 54 patients (mean ± standard deviation [SD] age 66.9 ± 9.8; 53.7% male), 67 (62.0%), 30 (27.8%), and 11 (10.2%) eyes had primary open angle glaucoma, angle closure glaucoma, and no glaucoma respectively. Eighteen (33.3%), 11 (20.4%), 8 (14.8%), 12 (22.2%), and 5 (9.3%) patients had no, mild, moderate, severe, or advanced/end-stage glaucoma (better eye), respectively. Initially, 311 items within nine HRQoL domains were identified: Visual Symptoms, Ocular Comfort Symptoms, Activity Limitation, Driving, Lighting, Mobility, Psychosocial, Glaucoma management, and Work; however, Driving and Visual Symptoms were subsequently removed during the refinement process. During cognitive interviews, 12, 23 and 10 items were added, dropped and modified, respectively. Conclusion Following a rigorous process, we developed a 221-item, 7-domain Asian glaucoma-specific IB. Once operationalised using CAT, this new instrument will enable precise, rapid, and comprehensive assessment of the HRQoL impact of glaucoma and associated treatment efficacy.

Measuring glaucoma quality of life in an Asian population using item banking: psychometric evaluation and computerized adaptive testing simulations

“…Indeed, few participants had VI in the better eye (11.6%) resulting in a sample skewed towards the higher end of the ‘ability’ spectrum. However, because the PSI/PR values fall well within a useful range for a measurement tool [ 22 ], we retained the OS scale due to high perceived importance in our qualitative participant responses [ 19 ], and input from our team’s research clinicians that changes in OS consequent to glaucoma and its associated interventions are integral to clinical care outcomes.…”

“…These issues may be due to the small sample size, with only 41% of participants providing responses for this domain and, of these, 40% recording an ‘extreme’ high score and thus removed a priori from analysis. This was unexpected as ‘work’ issues were important to our working focus group participants (25%) [ 19 ]. However, with only 17% of our current sample aged < 60 years (median age 68), the WK IB lacked applicability and was not pursued.…”

“…The content development process of the GlauCAT™-Asian IBs has been described in detail elsewhere [ 19 ] and more information is provided in Online Resource 3. In brief, the final instrument comprised 221 items under seven QoL domains with 4 to 5 response options each rated on a Likert-type scale with a non-applicable option available when the task or issue was not relevant to the participant (Online Resource 4): Activity Limitation (AL; n = 72); Lighting (LT; n = 15); Mobility (MB; n = 19); Psychosocial (PSY; n = 55); Ocular Comfort Symptoms (OS; n = 19); Glaucoma Management (GM; n = 28); and Work (WK; n = 13).…”

“…Our team has recently developed domains and items for a glaucoma-specific instrument HRQoL item bank (IB) and CAT based on qualitative information from Asian patients with glaucoma (GlauCAT™-Asian), which differs from the GlauCAT™-Western in terms of number of domains (7 vs. 12, respectively) and content (e.g., more items about glaucoma management in GlauCAT™-Asian) [ 19 ]. Indeed, in a head-to-head comparison of the GlauCAT-Western and GlauCAT-Asian instruments, we found that only 57% of content in GlauCAT-Western was similar to GlauCAT-Asian, and that 25% of the content in the new GlauCAT instrument was unique (Online Resource 1).…”

Efficiency, Precision, Validity, and Reliability of GlauCAT-Asian Computerized Adaptive Tests in Measuring Glaucoma-Related Quality of Life

“…To account for differences in disease pathophysiology, lifestyles, health care systems, and illness perceptions between patients with glaucoma in Western and Asian countries, we have also subsequently developed a seven-domain, 182-item IB to assess the HRQoL impact of glaucoma and associated treatments in Asian patients (GlauCAT- Asian). 16 , 17 …”