Self-Reporting in MS: Bridging the Knowledge Gap Between Patients and Physicians

Self-reporting among multiple sclerosis (MS) patients was the focus of 2 posters during a Quality of Life (QoL) poster session at the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The first, written by Dr P. Zaratin et al, discussed discrepancies between patient perceptions and clinician assessments of disease severity. The second, arranged by Dr S. Koster et al, mapped the correlation between an increased accuracy of those perceptions on account of use of the Functional Index for Living with Multiple Sclerosis (FILMS), a QoL assessment used during clinic visits, and satisfaction with visit effectiveness. Both posters attested to the importance of strengthening patient perceptions when using self-report information in research studies.

In the first poster discussed here, the findings shown were taken from 76 MS patients who were given a self-administered survey in order to determine appropriate MS clinical course according to 5 standard categories. Among these patients, 29 self-categorized as primary progressive MS (PPMS), 19 as secondary progressive (SPMS), 9 as progressive relapsing (PRMS), 16 as relapsing remitting (RRMS), and 3 as benign (BeMS). However, these self-evaluations did not match with clinician assessments whose results were 9 patients as PPMS, 26 as SPMS, 1 as PRMS, 40 as RRMS, and 0 as BeMS.

With the same results, the clinical team then measured each patient’s awareness of his/her disease progression by grouping categories according to relapsing and progressive courses. In this case, 20 individuals were reclassified as RRMS/PRMS and 29 as SPMS/PPMS by both self and clinician assessments, showing an increased matching of 64.5%. However, a mismatch remained between the 2 assessments among the remaining 27 individuals, rendering the effectiveness of MS patient self-reporting unsatisfactory.

According to this study, “Several reasons could explain the disagreement for the category and group classifications… A lack of updating on the correct clinical course, probable due to a disease duration longer than the global average (27.5 vs 16.6 years, P =.04), could justify self-classification as RRMS/PRMS for 5 individuals, although clinician assessment was SPMS/PPMS. Finally, 19 PwMS self-classified as SPMS/PPMS, instead of the correct RRMS/PRMS, probably as consequence of health worsening, such as reported in EQ-5D.” The study also suggested that the 3 subjects self-classified BeMS perceived a state of well-being as shown in the quality-of-life scale (EQ-5D).

In the second poster discussed here, findings evidence a correlation between patient and clinician perceptions of disease severity according to the FILMS instrument, and satisfaction with visit effectiveness among both parties. For this study, information was gathered from 93 MS patients and 4 clinicians at 3 MS practices. There were 2 clinic visits 3 to 6 months apart. Both clinicians’ and patients’ perception of visit quality was assessed at each visit on a 1 to 5 Likert scale. To assess FILMS effectiveness, visit 1 was conducted per clinic routine, and visit 2 included the FILMS instrument. Clinicians rated disease severity on a 1 to 5 Likert scale using the classifications of mild to moderate (1-3) and severe (4, 5). The results of the 2 assessments were compared using the Spearman Rank Correlation Coefficient (SRCC).

Patient satisfaction was generally greater during the FILMS visit. When FILMS was used, SRCC results showed an increase in patient satisfaction particularly for those patients with mild-moderate disease. For patients with severe disease, the correlation between satisfaction and severity remained strong regardless of FILMS implementation.

Likewise, clinician perception of visit effectiveness was greater when FILMS was used. Clinician satisfaction correlated with severity only in patients with severe disease, while visits were deemed equally effective among patients with mild to moderate disease.

As a result of these findings, Dr Koster et al ask clinicians to take stronger consideration of patients’ self-rated health when determining global estimates of disease severity for MS. A QoL instrument like FILMS helps to address the concerns of MS patients, and in turn, increase overall satisfaction among MS patients.