Barriers to entry for keratoconus patients to corneal cross-linking services in provincial New Zealand: a patient and family qualitative research project

AIM: Keratoconus is characterised by progressive corneal thinning and protrusion, leading to vision loss. Despite the availability of treatments to arrest its progression, patient outcomes in New Zealand are limited by delayed diagnosis and treatment. This study aimed to identify barriers to early diagnosis and treatment of keratoconus among patients in New Zealand, focussing on improving outcomes and reducing health disparities, particularly among Māori and Pacific populations. METHODS: A focus group was conducted with 11 participants, including whānau and patients with serious or progressive keratoconus who underwent corneal cross-linking at Rotorua Eye Clinic. Participants shared their experiences navigating the keratoconus care pathway from initial symptoms to treatment. Grounded theory and thematic analysis were employed to identify key barriers and suggestions for improving care delivery. RESULTS: Four themes emerged. Firstly, there were barriers to initial diagnosis. The main challenges included a lack of awareness of keratoconus and delays in referral to ophthalmology. Secondly, participants discussed challenges faced in accessing ophthalmology services, including lack of communication and financial and logistical issues. Thirdly, keratoconus significantly impacted their quality of life. Patients and whānau reported emotional, social and occupational burdens. Participants emphasised timely diagnosis and consistent referral pathways to avoid the morbidity they experience. Finally, we discussed suggestions for improving the keratoconus patient pathway. Suggestions included community education, school-based screening programmes and clearer patient education at the point-of-care. CONCLUSION: Significant barriers hinder early diagnosis and treatment of keratoconus, exacerbating its impact on quality of life. School-based screening and targeted education campaigns could expedite diagnosis and intervention.