Originally published in NKCF Update (June 2024).
A committee of keratoconus experts in France published their efforts to create a questionnaire that captures many of the quality-of-life (QoL) concerns of individuals with keratoconus.
In 2017, the Keratoconus Outcomes Research Questionnaire (KORQ) was developed in Australia to identify how keratoconus affects QoL for patients with mild, moderate, and severe disease. The KORQ includes two sets of questions: 18 questions about activity limitation (e.g., how much does your vision interfere with using a computer or walking up/down steps, etc.). A second group of 11 questions evaluates the impact of KC-related symptoms (e.g., how much are you troubled by bright sunny days, windy days, smoking environments, etc.). The KORQ has been adapted and used by researchers in several countries.
The French scientists wanted to study aspects of life with keratoconus that are not measured with KORQ. To create a new survey, researchers conducted intensive phone interviews with keratoconus patients to identify areas of concern. Disease severity among interviewees ranged from mild to severe, and the ages of those interviewed was 22 to 67, with a median age of 35.5 years. The interviews yielded six themes that impact QoL to be incorporated into the final version of the questionnaire:
Social Life impact: The most common complaint was the inability to drive at night or to go out on their own to social gatherings. Study subjects reported that people in their social circle – including family members – had difficulty understanding their daily struggles.
Psychological impact: Worry and anxiety were reported by subjects, often associated with a fear of becoming blind. Older patients reported being worried that their children may develop the disease.
Professional Life impact: Patients were concerned about the use of sick and vacation time for doctor visits. Some also reported they felt less effective at work due to computer screen fatigue, dusty environments, or difficulty driving. Others reported the need to interrupt their career or change jobs due to KC.
Financial impact: Costs associated with contact lenses, including solutions and replacement lenses, the cost of traveling to doctor visits and purchase of specific tools or software for home use were mentioned along with the time cost managing the disease.
Daily life impact: Study subjects reported struggles with tasks like grocery shopping or orienting themselves in new places. Patients also reported they believed they were less efficient at tasks like cooking, gardening, or cleaning because of KC.
Student life impact: Older patients remembered trouble they had as students and current students reported difficulty seeing what is written on blackboards or keeping up with reading assignments. Some reported changing fields of study because of the challenges encountered.
The authors found that, despite the severity of disease or treatments they had undergone, participants raised common themes and concerns. Creating and validating a KC-specific questionnaire will provide eye doctors with a valuable tool to assess the impact of keratoconus on their patient’s quality of life.
Reference: Fournie P, Acquadro M, et al, Keratoconus and the Impact of Treatment on Patients’ Quality of Life: A Qualitative Study, Ophthalmol Ther 12:1939-1956, 2023