Patient and HCP Demographics
In total, 76 patients (UK 35; Canada 41), 92 neurologists (UK 52; Canada 40), and 40 MS nurses (UK 20; Canada 20) completed the MSdialog benefits survey. Patient and HCP baseline demographics are shown in Tables 1 and 2, respectively.
Overall Reaction to MSdialog
Patients expressed a high interest in using MSdialog, with 94 % of patients rating “how would you describe your level of interest in using the MSdialog software tool” as 5–7 (where 7 is “very interested” and 1 is “not at all interested”). Patient quotes included “I think it is awesome and I would like to try it” and “I try to remember to write down how I’m feeling…but this is in a diary at home and I sometimes forget…if there was a tool available to do this on-the-go it would help”. HCPs also appreciated the ability of patients to record information, with one UK neurologist stating “This is an excellent tool, it engages patients more with their treatment and provides valuable sources of information for the treating neurologist”. HCP quotes also included “…it seems to be a good idea, it could save me time and help focus on patient needs” and “Great! Should decrease amount of time on asking questions. Will streamline appointments and make it easier to set realistic goals that are mutually acceptable to HCPs and patients”.
The Value of MSdialog—User-Reported Benefits
In general, user-reported benefits were highly motivating for patients, scoring 6.0–6.3 out of 7 on all but one benefit tested. The most motivating benefit related to sharing information with their doctor: 71 % of patients ranked this among their top three most motivating benefits. In total, over 80 % of patients agreed that MSdialog could deliver on each of the benefits listed in Fig. 2, with the exception of “MSdialog would keep me motivated to take my drug”. Ninety-six percent of patients agreed with the benefit “MSdialog would be an easy way to provide relevant information to my doctor”, rating this benefit 5–7 on the 7-point scale; and 92 % of patients agreed “MSdialog would be an easy way for me to engage in the management of my disease”, rating this statement 5–7 on the 7-point scale.
In alignment with the views of the patients surveyed, >80 % of HCPs were highly motivated (i.e., recorded 5–7 on the 7-point scale) by the availability of PRO data, identifying areas to focus on during consultations and helping patients to engage with their disease. Neurologists were also particularly motivated by the availability of adherence data, with 48 % of neurologists most motivated by the statement “MSdialog would provide readily available, user-friendly patient treatment adherence data over time”. Over 80 % of HCPs agreed with the statements “MSdialog would provide readily available, user-friendly patient treatment adherence data over time” and “MSdialog would provide readily available, user-friendly, agreed upon patient-reported outcome data over time”, giving mean ± standard deviation (SD) scores of 5.7 ± 1.3 out of 7 ± 1.2 (with 7 being “completely agree” and 1 being “completely disagree”) for both statements. HCPs were least convinced by the benefit that MSdialog could save time during consultations, giving a mean ± SD score of 5.0 ± 1.5 out of 7.
The Value of MSdialog—Functionality Benefits
Overall, the functionality benefits of MSdialog were appealing to at least 80 % of patients, and a high proportion (≥54 %) found most benefits to be “extremely appealing” (Fig. 3). The most appealing benefit for patients was the ability to share how MS is impacting their life.
Similar to the opinions of the patients, surveyed HCPs also found all functionality benefits appealing. All benefits appealed to ≥73 % of neurologists, ≥78 % of nurses, and ≥74 % of all HCPs, irrespective of role. Viewing adherence and PRO data was the most appealing function. The highest performing benefit for nurses related to MSdialog allowing patients to set reminders on their future appointments, medication and treatments, and the PRO questionnaires.
The Value of MSdialog—PROs
Patients felt that it was highly important to monitor and review PROs over time, with more than 90 % of patients scoring the following between 5 and 7 (with 7 being “extremely important” to monitor and 1 being “not important at all”): fatigue (99 %), fatigue impact (97 %), physical health (96 %), general health (95 %), cognitive deficits (93 %), pain (91 %), and sleep quality (91 %). Symptoms such as bowel control and sexual satisfaction were considered less important, with only 70 and 65 % of patients scoring them between 5 and 7, respectively.
HCP responses generally agreed with those of patients regarding the importance of monitoring PROs, but also placed higher emphasis on mental (92 % [HCP] vs 81 % [patient]), emotional (91 vs 80 %), and social (92 vs 73 %) well-being. When patients and HCPs were asked about other health considerations or PROs that they felt were important to monitor with MSdialog, both stated treatment side effects (e.g., injection-site reactions and flu-like symptoms); gait, balance, and mobility; work/employment capacity; dizziness/numbness; relationships; QoL; and relapses.
The Value of MSdialog—Clinical Benefits
The assessment of clinical benefits was carried out by HCPs only. Neurologists and nurses exhibited a high level of agreement regarding clinical benefits relating to treatment adherence. Ninety-three percent of HCPs agreed (i.e., recorded 5–7 on the 7-point scale) with the claim that engaged patients are more adherent (mean ± SD score: 6.0 ± 0.9 out of 7) and 91 % agreed that better adherence generally leads to better clinical outcomes (mean ± SD score: 5.9 ± 1.0 out of 7).
MSdialog Usability Pilot Survey
Patient Demographics and MS History
A total of 42 patients who completed the MSdialog survey were enrolled in the MSdialog usability pilot survey, of whom 39 completed the week 6 health report and feedback survey (UK 19 patients; Canada 20 patients) and 12 completed the exploratory follow-up telephone interview (six each from the UK and Canada). Two patients discontinued from the study because of illness and one patient discontinued for unknown reasons. Of the 39 patients who trialed and provided feedback on the MSdialog web-based software, 13 patients also chose to use the mobile App.
The mean ± SD age of patients taking part in the pilot study was 43.9 ± 7.6 years and 72 % of patients were women. Concerning disease and treatment history, the mean ± SD time since diagnosis was 7.0 ± 6.4 years and mean ± SD duration of drug treatment was 4.8 ± 4.5 years. Most patients (82 %) were currently receiving sc IFN β-1a; other current MS therapies were dimethyl fumarate (8 %), other (10 %), and none (10 %). Previous treatments included sc IFN β-1a (15 %) and intramuscular IFN β-1a (13 %).
Current and Previous MS Management
Overall, the mean ± SD frequency of interaction with a neurologist or nurse was 1.5 ± 0.7 and 1.6 ± 1.6 times per year, respectively. Patients reported moderate-to-high satisfaction with MS management (mean ± SD score: 5 ± 1.5 out of 7 on the 7-point scale).
Generally, motivation to track health status was high: 79 % of patients scored their motivation as 5–7, where 7 indicates “extremely motivated” and 1 “extremely unmotivated”. In total, 63 % of patients were dissatisfied with their current tracking tool, rating their current tool from 1–4, where 1 indicates “extremely dissatisfied” and 7 indicates “extremely satisfied”. Sixty-four percent of patients reported previously keeping a record of their health. Pen and paper was the most common previously used method to keep health records (92 %), followed by mobile phone Apps and other online tools (both 8 %), and blogs and other electronic formats (both 4 %). Most patients (64 %) stated that they often or always forget to mention something they intended to raise with their HCP during their consultation. Furthermore, 51 % of patients reported often or always feeling they could have made better use of their consultation time.
Patient Feedback on MSdialog Web and App Platforms
Usability (overall ease of use) of MSdialog increased from week 3 to week 6, with the percentage of patients finding the web-based software “easy” or “very easy” to use, increasing from 77 % at week 3 to 85 % at week 6. For the 13 patients who used the MSdialog App, 85 % found it “easy” or “very easy” to use at both week 3 and week 6. Sixty-four percent of patients found the overall intuitiveness of the web-based software “easy” or “very easy” at week 6, compared with 59 % at week 3; the corresponding values for the App were 85 and 69 %. Importantly, overall ease of PRO completion also improved over time. At week 6, 95 % of patients found PRO completion using the web-based software “easy” or “very easy”, compared with 85 % at week 3, while the same parameter increased from 92 to 100 % for the App.
Eighty-seven percent of patients stated that PRO completion fitted in “fairly well” to “extremely well” with their weekly routine, with 44 % able to complete the questionnaire within 6–10 min. The mean ± SD time spent completing the questionnaires was 11.3 ± 5.2 min per week. At week 3, 69 and 79 % of patients were either “extremely committed” or “committed” to completing health reports on a weekly or monthly basis, respectively. At week 6, this decreased to 64 and 74 %, respectively. Patients considered all six health reports completed in the study useful to monitor, with the longer MS QoL report rated as the most important (mean ± SD score: 6.1 ± 1.0 out of 7, where 7 is “most useful” and 1 is “least useful”), followed by pain (5.9 ± 1.2), cognitive function (5.9 ± 1.3), fatigue (5.8 ± 1.4), mental health (5.7 ± 1.2), and social support (5.2 ± 1.5). An exploratory follow-up of a small patient sample (n = 12) found that the utility of PRO health reports was dependent on the individual: patients placed highest value on the PROs that they experience. However, some patients considered certain PROs to be less relevant to their circumstances and thus challenging to answer questions on, while others considered it useful to highlight less recognized issues.
At week 6, 77 % of patients were “very satisfied” or “extremely satisfied” with their MSdialog experience so far, with 82 % considering it a better method for tracking their MS health compared with previously tried methods, and 95 % of patients stating that they would recommend MSdialog to another person with MS. At the start of the study (week 0), interest in MSdialog was high: 74 % of patients recorded scores of 6 or 7 (with 7 being “extremely interested” and 1 “extremely uninterested”). This high initial interest was sustained and increased slightly over the course of the pilot study, with 85 % of patients returning a score of 6 or 7 at week 6. Similarly, most patients were highly motivated to use MSdialog to track health: 95 % of patients recorded a score of 5–7 and 82 % a score of 6–7, with 7 being “extremely motivated”. The most important reasons for high motivation in over 50 % of patients at week 6 were “helps me remember what to mention to my doctor”, “easy way to engage in disease management”, and “easy way to provide relevant information to doctor”.