Living Well with Keratoconus: Implications for Person-Centred Eye Care

PURPOSE: Evidence from patient-reported outcome measures demonstrate that keratoconus adversely impacts quality of life. However, qualitative research exploring the life experiences of persons living with keratoconus remains limited. Gaining insights to these experiences is valuable for eye health care professionals, as it enhances understanding about life beyond the clinic and supports person-centred care. The aim of this study is to explore how persons living with keratoconus experience vision-related quality of life. METHODS: This study employed a qualitative design, using semi-structured individual interviews with persons with keratoconus guided by a framework of vision-related quality of life. Participants were recruited through self-selection in response to an invitation posted on Keratokonus Norge (Facebook group) and through purposive sampling by optometrists in private practice. Data were analysed using inductive Systematic Text Condensation. RESULTS: Thirteen participants with keratoconus, six women and seven men, representing all age decades from 20 to 70 years, were interviewed. All participants had been diagnosed with keratoconus for at least 5 years and represented a range of medical treatment histories and optical correction modalities. The inductive analysis through Systematic Text Condensation resulted in five main concepts: (1) A good life with keratoconus, (2) Contact lenses - a game changer, (3) Persistent symptoms and emotional impact, (4) Coping strategies and (5) Eye care is key. CONCLUSION: Although keratoconus affects daily functioning and vision-related quality of life, participants' experiences show that living well with the condition is possible through appropriate eye care, personal acceptance and the use of various coping strategies. These insights provide valuable perspectives for person-centred care and offer reassurance and encouragement for individuals newly diagnosed.