Patient Attitudes to Routine Cognitive Testing in Multiple Sclerosis

BACKGROUND AND AIM: In recent years, cognitive dysfunction (CD) in multiple sclerosis (MS) has received increased attention. Neuropsychological tests have been developed allowing to monitor changes in patients’ cognitive functions. Knowledge is lacking, however, about patients’ attitudes towards introducing routine cognitive testing. It was the aim of this qualitative study to explore this. MATERIALS AND METHODS: Based on a literature study, semi-structured interview guides were designed and used in qualitative interviews with 12 Danish patients. Participants were selected to represent different perspectives on CD and included patients with relapsing-remitting MS (RRMS) and secondary-progressive MS (SPMS), women and men with varying time since diagnosis and cognitive test scores using the Symbol Digit Modalities Test (SDMT). The data were analysed using a constructivist approach in order to identify significant relations between the quality of life (QoL) impact of CD, and attitudes towards routine cognitive testing. RESULTS: Most participants reported several subtypes of CD, yet objective CD did not coincide with subjective CD nor did it translate directly into poorer QoL. Overall, CD appeared to have larger impact on the QoL of patients with RRMS and higher SDMT scores, compared to patients with SPMS and lower SDMT scores. The QoL impact of CD manifested itself in the encounter between individual symptoms, expectations, coping and meaningful activities. All patients supported an introduction of routine cognitive testing, but patients with RRMS and SPMS had different main reasons to do so. These were related to supporting research, optimising treatment decisions, and providing documentation of this invisible MS symptom. CONCLUSION: All aspects of MS patients’ QoL may be affected by CD. Introducing routine cognitive testing was widely supported by patients in all phases of MS calling for comprehensive care taking both physical and cognitive difficulties into account.