Why it is important to ask for visual complaints in people with multiple sclerosis or Parkinson’s disease
Multiple sclerosis (MS) and Parkinson’s disease (PD) are neurodegenerative disorders progressively affecting large parts of the brain and central nervous system. Although these disorders are primarily known for their prominent motor symptoms, various other symptoms may also occur, such as cognitive symptoms, psychiatric symptoms and sensory symptoms, including visual problems. In recent studies, we showed that visual problems in people with MS or PD are common and that people report a wide variety of visual complaints (van der Feen et al., 2022; van der Lijn et al., 2022; van der Lijn et al., 2023).
The top 5 most frequently reported complaints by both people with MS and people with PD were:
- unclear vision,
- difficulty focusing,
- difficulty reading,
- being blinded by bright light,
- and needing more light.
The order of occurrence differs slightly between the MS and PD groups. Other frequently mentioned complaints were: having trouble with depth perception or missing parts of the visual field (co-occuring with MS), experiencing double vision (co-occuring with PD), needing more time to see, experiencing reduced contrast, and having difficulty with traffic participation (co-occuring in both groups).
Vision is essential for the performance of most daily life activities, for example for reading and driving.
The importance and potential impact of such complaints is underscored by the fact that vision is essential for the performance of most daily life activities, for example for reading and driving. Particularly people with MS or PD may need to rely on vision even more than healthy individuals do in order to compensate for their motor symptoms. Loss of vision may thus decrease their independence in daily life. Furthermore, visual complaints can be seen as an extra burden on people who are already dealing with impairment in functioning, further decreasing quality of life.
In clinical practice, however, visual complaints often go undetected for a number of reasons. People with MS or PD, or acquired brain injury in general, might not report their visual problems because other symptoms may be more prominent. Furthermore, healthcare professionals typically only have 15 minutes to speak to their client, which leaves not enough time to discuss all problems. People also tend to find it hard to specify their visual complaints and might not be aware that visual problems may be part of their disease. Lastly, clinicians are often not trained to and familiar with asking questions on visual functioning on a structural basis, which results in a full reliance on the person’s (possibly decreased) self-initiated declaration.
Although people may experience visual complaints, this is often not reflected by impairments in common assessments of visual, visuoperceptual and cognitive functions.
Something to keep in mind when people do report visual complaints is that these complaints are not always represented in functional assessments. This means that although people experience complaints, this is often not reflected by impairments in common assessments of visual, visuoperceptual and cognitive functions (van der Feen et al., 2023). Unfortunately, this results in complaints not being taken seriously in some cases, despite the fact that they can have a major impact on the daily lives of those who suffer from them.
By administering the Screening Visual Complaints questionnaire, a quick and clear overview of the visual complaints of people with MS or PD can be obtained.
In rehabilitation settings it is often assumed that an extensive assessment of relevant functions forms the basis for rehabilitation. However, we advocate that additionally asking for complaints in a standardized manner is essential, since these complaints are an indication of the difficulties a person encounters in daily life. By administering a short questionnaire, for example the Screening Visual Complaints questionnaire (Huizinga et al., 2020), a quick and clear overview of the visual complaints of people with MS or PD can be obtained, which ensures that treatment is focused on the person’s priorities in daily life. With this advice, we aim to improve the recognition of potential visual complaints in those living with MS or PD and to improve clinical care for them.
Acknowledgements
I thank Fleur van der Feen (https://www.rug.nl/staff/f.e.van.der.feen/) for co-authoring this blog post.
Image credits
Featured image from Flickr.com by D.C. Atty (licenced with Attribution 2.0 Generic (CC BY 2.0))
References
Van der Feen FE, de Haan GA, van der Lijn I, Huizinga F, Meilof JF, Heersema DJ, Heutink J. Recognizing visual complaints in people with multiple sclerosis: Prevalence, nature and associations with key characteristics of MS. Mult Scler Relat Disord. 2022 Jan;57:103429. doi: 10.1016/j.msard.2021.103429. Epub 2021 Nov 24. PMID: 34863058.
Van der Feen FE, de Haan GA, van der Lijn I, Stellingwerf C, Vrijling ACL, Heersema DJ, Meilof JF, Heutink J. The complex relation between visual complaints and decline in visual, visuoperceptual and cognitive functions in people with multiple sclerosis. Neuropsychol Rehabil. 2023 Mar 5:1-24. doi: 10.1080/09602011.2023.2179075. Epub ahead of print. PMID: 36871257.
Van der Lijn I, de Haan GA, Huizinga F, van der Feen FE, Rutgers AWF, Stellingwerf C, van Laar T, Heutink J. Self-Reported Visual Complaints in People with Parkinson’s Disease: A Systematic Review. J Parkinsons Dis. 2022;12(3):785-806. doi: 10.3233/JPD-202324. PMID: 35001897; PMCID: PMC9108577.
Van der Lijn I, de Haan GA, van der Feen FE, Huizinga F, Stellingwerf C, van Laar T, Heutink J. Prevalence and nature of self-reported visual complaints in people with Parkinson’s disease-Outcome of the Screening Visual Complaints questionnaire. PLoS One. 2023 Apr 4;18(4):e0283122. doi: 10.1371/journal.pone.0283122. PMID: 37014842; PMCID: PMC10072373.
Huizinga F, Heutink J, de Haan GA, van der Lijn I, van der Feen FE, Vrijling ACL, Melis-Dankers BJM, de Vries SM, Tucha O, Koerts J. The development of the Screening of Visual Complaints questionnaire for patients with neurodegenerative disorders: Evaluation of psychometric features in a community sample. PLoS One. 2020 Apr 29;15(4):e0232232. doi: 10.1371/journal.pone.0232232. PMID: 32348342; PMCID: PMC7190154.
Iris van der Lijn is almost finished with her PhD in the field of Clinical Neuropsychology and works as a neuropsychologist at Royal Dutch Visio. Her project is part of a large research project (NAH-Progress) on visual complaints in people with neurodegenerative diseases. Her speciality is Parkinson’s disease. In her project, she provides an overview of visual complaints people experience and makes suggestions for care improvement.
