Qualitative, exploratory pilot study to investigate how people living with posterior cortical atrophy, their carers and clinicians experience tests used to assess vision

OBJECTIVES: To investigate the experiences and views of people living with posterior cortical atrophy (PCA), their family carers and healthcare professionals of vision assessment tests. DESIGN: A qualitative investigation using video recordings of vision assessments, semistructured interviews and audio recordings of a focus group. Interviews and focus group used broad, open questions around the topic to prompt and guide discussion. Video and audio recordings were transcribed, manually coded and analysed using framework analysis. SETTING: University College, London’s Queen Square neurology centre provided the venues for all stages of the research. PARTICIPANTS: Participants living with PCA were one male and two females (age range 67–78 years). Health professional participants were a neurologist (male), two ophthalmologists (male) and an optometrist (female). PRIMARY AND SECONDARY OUTCOMES: (1) Experiences and attitudes of people living with PCA and health professionals to vision assessment tests, (2) views of health professionals and people living with PCA of whether some tests are more effective at discriminating between cortical vision problems and vision problems related to optical or ocular causes. RESULTS: Patients were able to engage with and complete a number of tests. Their partners played a vital role in the process. Participants reported that simple, short tests were more effective than more subjective tests. Examples of tests that appeared to be more problematic for the patient participants were the Amsler Grid and visual field analysis. CONCLUSIONS: Although limited in scope and execution, the project suggests that some vision assessment tests are likely to support health professionals to discriminate between cortical and optical/ocular causes of visual impairment. It supports existing evidence that there are vision assessments that people with dementia can engage with and complete. We identify areas of importance for future research and make tentative suggestions for clinical practice.