The completion rate of the survey was 64%, with a large part of drop-outs due to patients who only agreed to participate but not answer any questions. The survey was completed by 408 respondents, on a mobile device (n = 279), a desktop (n = 122) or paper (n = 7). Three-hundred and sixty-two respondents had no previous experience with the HandScan (89%), whereas 46 respondents (11%) did. Further characteristics of the respondents of the survey are depicted in Table 1.
Current monitoring process
Visits to outpatient clinics
Most respondents visited the outpatient clinics 1–4 times per year [1–2 times n = 171 (42%); 3–4 times n = 164 (40%)], and 372 respondents (91%) were satisfied with the number of visits. The most frequently visited healthcare professional was a rheumatologist, followed by a rheumatology nurse.
Examinations during visits
Respondents reported that during their visits physicians almost always (96%) asked for a patient’s opinion on the current disease status, and that blood testing was in general conducted (90%). A physical examination of the joints occurred almost always according to 71% of respondents. In general, respondents were satisfied (86%) with the frequency of being asked their opinion, blood tests, and physical examinations. Imaging (eg radiography, ultrasound, CT, MRI) occurred either on some visits (42%) or almost never (48%). Two-hundred and eighteen respondents (59%) were satisfied with the frequency of imaging.
Based on the percentage of respondents that answered ‘agree’ or ‘completely agree’, respondents indicated that the healthcare professional discussed the outcomes of the examinations during hospital visits with them (n = 360, 88%), that they understood the results of the examinations (n = 359, 88%), and also understood what these results could mean for their treatment (n = 334, 82%). Furthermore, 345 respondents (85%) indicated that healthcare professionals took sufficient time to answer their questions. Three-hundred and thirty (81%) respondents trusted the outcomes of the tests to inform decisions on treatment. Respondents who were already examined using the HandScan had more trust in the results of the HandScan for decisions on their treatment, χ2 (5, n = 408) = 44.6, p < 0.001* than respondents without this experience.
Insight in the status of the disease
Out of the total of 408 respondents, 298 (73%) believed they had sufficient insight into the current status of their RA. Respondents who found the frequency of imaging too low are less likely to feel they have sufficient insight into their RA activity, χ2 (4, n = 367) = 47.4, p < 0.001* compared with respondents satisfied with this frequency.
One hundred and two respondents (28%) would like to receive additional information from their rheumatologist. The respondents who felt to have insufficient insight were more likely to report to desire additional information (27 out of 43, 63%) compared to those who felt to have sufficient insight (50 out of 261, 19%, χ2 (1, n = 304) = 37.2, p < 0.001*). Respondents indicated in the free-text comments that they would like to receive additional information on their current disease status (n = 29, 26%; including information on disease activity, the meaning of test results, or the choice of treatment). A further 26 respondents (23%) would like to receive (more) information on additional or alternative treatment, including information on the effect of nutrition or exercise on disease activity, or the possibilities of using medication with less side effects. A third category included information on side effects of medication and on extra-articular complaints of RA, such as pain and fatigue (n = 13, 12%). Other areas included long-term expectations for symptoms (n = 8, 7%), insight into progress of the disease (n = 6, 5%) and a general desire to have more imaging (n = 6, 5%).
Shared decision-making process
Respondents gave the shared decision-making process on average an 8.1 on a scale from 0–10 (median score 8; IQR 7–9). Only 24 respondents (6%) gave a score of 5 or lower, which could be considered as ‘unsatisfactory’. Of all free-text comments (304 respondents with in total 342 comments) regarding shared decision-making, 267 (78%) could be categorized as positive, 53 (15%) as negative and 22 (6%) were unclear or did not refer to the decision-making process. Respondents who gave the process a score of 5 or lower only provided free-text comments categorized as negative (n = 18), whereas respondents who gave the process a 6 or higher provided both positive (n = 267) and negative (n = 35) comments. Reasons to be satisfied included receiving sufficient explanations, good collaboration and communication with the rheumatologist (n = 214, 80%), satisfaction with the current status of their disease (n = 20, 7%), trust in the expertise of the rheumatologist (n = 16, 6%), adequate actions by the rheumatologist, personalized treatment (n = 10, 4%) and easy access to the rheumatologist (n = 7, 3%). Reasons to be dissatisfied included free-text comments on the collaboration and communication by the rheumatologist (n = 33, 62%), disagreeing with the rheumatologist’s decisions (n = 6, 11%), difficulties accessing the rheumatologist (n = 3, 6%), that the rheumatologist did not take all complaints into consideration (n = 3, 6%), not liking the treatment (n = 2, 4%), or other (n = 6, 11%).
New imaging technology HandScan
Potential added value of the HandScan
When asked about the added value of the HandScan, 240 respondents (59%) reported a large added value, 148 (36%) a small added value, and 20 (5%) no added value. Respondents with experience with the HandScan were more likely to see a large added value than respondents without experience with the HandScan (χ2 (2, n = 408) = 6.7, p = 0.04*). Respondents who thought that the current frequency of imaging was too low, reported greater added value for the HandScan, χ2 (2, n = 367) = 11.5, p = 0.003* than those satisfied with this frequency. 345 respondents (85%), added 396 free-text comments (330 categorized as positive, 16 as negative comments). The negative comments included the following considerations: the HandScan is limited to the hand and wrist area (n = 8, 50%), the outcome would most likely not affect their treatment (n = 4, 25%), or other (n = 4, 25%). Positive comments included that the HandScan would provide a clear image of (the location of) inflammatory activity, i (n = 232, 70%). Other reasons why the HandScan could add value were the ability to contribute to early recognition of inflammation and adaptation of the treatment (n = 27, 8%), to show progression over time and perhaps predict future developments (n = 25, 8%), and other (n = 46, 14%).
Desired functionalities and possible improvements
In the free-text comments, respondents gave several suggestions for desired functionalities of the HandScan (respondents without experience with the HandScan; 310 free-text comments by 262 respondents) or possible improvements (respondents experienced with the HandScan; 22 free-text comments by 22 respondents). These can be found in Table 2.
Preferred frequency of HandScan examinations
When asked on the preferred frequency of the use of the HandScan in the monitoring process, the most common answer was ‘at every hospital visit’ (n = 192, 47%), followed by ‘on some hospital visits’ (n = 171, 42%), ‘more often than just during hospital visits’ (n = 17, 4%), or ‘never’ (n = 9, 2%). Nineteen respondents (5%) answered that they had no opinion on this topic. Respondents who thought that the frequency of imaging was too low were more likely to report that they would prefer a HandScan at all check-ups, χ2 (4, n = 367) = 15.3, p = 0.004*. There was no difference between respondents with and without experience with the HandScan on the preferred frequency of a scan, χ2 (4, n = 408) = 2.1, p = 0.73.
Preference for HandScan examinations versus physical examinations
Out of the 408 respondents, 131 (32%) preferred the Hand-Scan, 123 (30%) had no preference, and 102 (25%) preferred a physical examination (and 52 respondents (13%) answered no opinion).). There was no difference between respondents with and without experience with the HandScan on whether they preferred the HandScan over a physical examination, χ2 (1, n = 233) = 1.7, p = 0.19. Those who preferred the HandScan provided free-text comments in support (130 comments in total), in which they considered the HandScan as more objective and accurate (n = 67, 52%), more convenient (less strenuous, less painful and faster; n = 43, 33%) and/or as a way of making inflammation visible for the respondents (n = 5, 4%), or useful since the respondents mostly had complaints in their hands/wrists (n = 5, 4%), and other (n = 10, 8%). In the 93 free-text comments on why respondents did not have a preference, they mentioned that if results were similar, both have pros and cons (n = 24, 26%), it depended on the complaints (n = 15, 16%), and they rather pointed out the complaints themselves instead of letting a device determine the symptoms (n = 5, 5%), and other (n = 7, 8%). Some respondents explained that no choice could be made without personally experiencing the HandScan (n = 12, 13%), and 30 respondents (32%) wrote that they would prefer to have both a physical examination and an examination with the HandScan. In 95 free-text comments respondents expressed why a physical examination was preferred. These included the following: that because other joints than the ones in their hands were of importance as well (n = 57, 60%), respondents had more trust in the rheumatologist than in a device (n = 13, 14%). Furthermore some respondents highlighted the importance of human contact during the physical examination (n = 4, 4%) and expressed their opinion that optical technology cannot observe everything (n = 4, 4%) and other (n = 17, 18%). Of note, across all categories, 40 respondents (10%) stated in the comments that they would prefer a combination of the HandScan and a physical examination, even though this answer option was not provided in the survey.