Quality of life with macular degeneration is not as dark as it may seem: Patients’ perceptions of the MacDQoL questionnaire

Abstract

To determine the perceived relevance and value of an individualized measure of the impact of macular degeneration on quality of life (QoL) for elderly people with Age- Related Macular Degeneration (AMD) in the USA, through the assessment of the suitability of the measure’s domains and by gaining a deeper insight into the impact of AMD on patients’ QoL vis-á-vis these domains, community-dwelling older adults in the metropolitan Salt Lake City, Utah area were interviewed using the macular degeneration on quality of life (MacDQoL) instrument. Participants felt that the MacDQoL was a relevant instrument for use in this US study population, though it could be improved by adding items pertaining to transportation, and independent driving, in particular, as an important QoL indicator. The emerging theme from analysis of the respondent’s commentary was that, in spite of AMD, these respondents were committed to engage in, and enjoy life. This is an important concept for clinicians and those who offer support programs to integrate into their care planning and reinforce in messaging to patients with the condition.