PF02
Understanding of Multiple Sclerosis Diagnosis, Disease Progression and Clinical Classifications from Adult and Pediatric Patient Perspectives
People with multiple sclerosis (MS) may transition from relapsing–remitting MS (RRMS) to secondary progressive MS (SPMS). There is little information on how well those with MS understand MS progression or the clinical terms used by healthcare professionals (HCPs). More information may help to improve HCP–patient discussions.
Objectives:
To assess patient attitudes to MS, and their understanding of disease progression and the clinical definitions used by HPCs.
Methods:
In-depth, qualitative interviews were conducted with 3 patients diagnosed with MS as adults: KF (RRMS for 1 year), JB (RRMS for 18 years) and KiM (SPMS for 6 years), and 1 patient diagnosed during adolescence: KaM (RRMS for 12 years). An online search was conducted for patient blogs.
Results:
At diagnosis, patients described “disbelief” and “shock”, but also “relief”, because symptoms had previously been dismissed by HCPs as “made up” or “depression”. KaM reported particular difficulties in having her symptoms believed, as well as “anger” about the disease and poor adherence to therapy in adolescence. Patients reported varying levels of awareness of MS progression. KF understood the importance of relapses but was unsure what progression meant. JB and KiM were reluctant to discuss progression with their HCPs because it would raise difficult questions about disease management.
Previously, MS was classified as primary progressive MS, progressive–relapsing MS (PRMS), RRMS and SPMS (Lublin et al. Neurology 1996;46:907–11). This has since been revised to exclude PRMS, and include subcategorizations of active or non-active, and progressive or stable; clinically isolated syndrome is also recognized (Lublin et al. Eur Neurol J 2014;72[suppl]:1–5). While the classifications are important for HCPs, patients may not understand the terms. JB said that the definitions make patients feel “compartmentalized”, commenting “Labeling patients may do more harm than good. If I’m labeled with SPMS, will I still be able to get my treatment?”. KaM described the terms as “confusing”, observing that patients struggle to relate the terms to their lives: “classifications do not help me live with MS.” A search of patient blogs identified similar sentiments about living with MS.
Conclusions:
Patients face many challenges in the diagnosis of MS and may not understand disease progression; those with RRMS fear being labelled with SPMS. There is a need for patient-friendly language to describe MS progression; it may be preferable to describe this as part of a disease spectrum.