Data Addendum 2023

Published

April 9, 2024

Visits

New patients

Patient self-observation

Figure 1: Main data collection within the SCQM in 2023

1 Introduction

This report provides an overview on the data and information collected in the past year (2023) for the different inflammatory rheumatic disease cohorts, see Figure 1, and special data collection initiatives like the unclassified arthritis cohort or the biobank project. Retroactive data entry is possible and all information within this report reflects the status within the SCQM as of the 2024-04-01.

Where not otherwise specified we report data or information on the SCQM patient populations at the end of 2023. The reporting considers any patient with at least one visit containing a minimum of physician based information. This report also excludes patients whose written informed consent has not been provided or not yet been verified.

There are three types of visits - inclusion, annual control and intermediate control visits. Each visit type includes physician and patient questionnaires. Furthermore the SCQM collects patient self-monitoring data via mySCQM independent of visits. An external link to summarized data collection schemes for each of the main cohorts is provided within Section 6.3.

As of the end of 2023 the main SCQM research cohorts encompass 19561 patients that have contributed their data for research. Table 1 provides further information about this cumulative population.

Table 1: Characterisation of the entire SCQM main cohorts at the conclusion of 2023.
Variable Level Overall RA axSpA PsA GCA/PMR
N of patients 19561 10585 5460 3100 416
Collection start 1997 2005 2006 2020
Year of inclusion (median [IQR]) 2011 [2006, 2016] 2009 [2003, 2014] 2013 [2009, 2017] 2014 [2010, 2018] 2022 [2021, 2022]
Clinical FU status (%) Visit in 2023 3764 (19.2) 1523 (14.4) 1247 (22.8) 815 (26.3) 179 (43.0)
Visit in 2022 1206 (6.2) 515 (4.9) 337 (6.2) 247 (8.0) 107 (25.7)
Officially discontinued 7379 (37.7) 4892 (46.2) 1681 (30.8) 798 (25.7) 8 (1.9)
Inactive for at least 2 years 7212 (36.9) 3655 (34.5) 2195 (40.2) 1240 (40.0) 122 (29.3)
Year of last visit (median [IQR]) 2018 [2012, 2023] 2016 [2009, 2021] 2019 [2014, 2023] 2021 [2016, 2023] 2023 [2022, 2023]
Years of clinical FU (median [IQR]) 3.72 [1.03, 8.21] 4.22 [1.21, 8.91] 3.26 [0.94, 7.59] 3.53 [1.03, 7.68] 0.66 [0.00, 1.83]
Visits per patient (mean (SD)) 6.36 (5.95) 7.10 (6.66) 5.46 (4.79) 5.83 (5.03) 3.41 (3.43)
mySCQM entries per patient (mean (SD)) 4.92 (14.37) 3.50 (12.09) 6.83 (16.71) 6.88 (17.00) 1.18 (5.43)
Institution of inclusion visit (%) hospital 4254 (21.7) 2374 (22.4) 1269 (23.2) 558 (18.0) 53 (12.7)
private practice 10878 (55.6) 6019 (56.9) 2940 (53.8) 1864 (60.1) 55 (13.2)
university hospital 4429 (22.6) 2192 (20.7) 1251 (22.9) 678 (21.9) 308 (74.0)
Switched institution (%) All visits at inclusion site 17353 (88.7) 9353 (88.4) 4795 (87.8) 2793 (90.1) 412 (99.0)
Visits in multiple institutions 2208 (11.3) 1232 (11.6) 665 (12.2) 307 (9.9) 4 (1.0)

2 Core Data

Key Numbers

In 2023 the SCQM recorded 5884 visits from 4736 patients. Among these 622 patients were new inclusions. Furthermore, 18104 mySCQM entries were made by 2543 patients. Among these 272 were new mySCQM users. Visits were recorded by 276 doctors spread across 98 institutions in 17 different cantons.

See more in about Visits in Table 2, about Inclusions in Table 3 and about mySCQM in Table 4.

Table 2: Characterisation of the population that participated within the SCQM via visits throughout 2023.
Variable Level Overall RA axSpA PsA GCA/PMR
N of visits 5884 2349 1891 1353 291
Visit-related patient questionnaire (%) Included 3342 (56.8) 1271 (54.1) 1164 (61.6) 821 (60.7) 86 (29.6)
Not included 2542 (43.2) 1078 (45.9) 727 (38.4) 532 (39.3) 205 (70.4)
Visit number within patient (%) Inclusion 622 (10.6) 158 (6.7) 216 (11.4) 149 (11.0) 99 (34.0)
2nd visit 561 (9.5) 171 (7.3) 174 (9.2) 143 (10.6) 73 (25.1)
3rd, 4th or 5th 1308 (22.2) 455 (19.4) 422 (22.3) 345 (25.5) 86 (29.6)
6th, 7th or 8th 970 (16.5) 408 (17.4) 327 (17.3) 220 (16.3) 15 (5.2)
9th visit or higher 2423 (41.2) 1157 (49.3) 752 (39.8) 496 (36.7) 18 (6.2)
Years since symptom onset (median [IQR]) 13.34 [7.01, 21.61] 13.33 [7.35, 21.03] 15.31 [8.79, 24.27] 13.02 [7.02, 21.03] 1.77 [0.51, 3.56]
Years since diagnosis (median [IQR]) 9.99 [4.61, 16.45] 11.59 [6.11, 18.51] 9.91 [4.72, 15.88] 9.43 [4.16, 15.85] 1.24 [0.34, 2.95]
Type of institution (%) hospital 930 (15.8) 365 (15.5) 342 (18.1) 184 (13.6) 39 (13.4)
private practice 3309 (56.2) 1330 (56.6) 1076 (56.9) 841 (62.2) 62 (21.3)
university hospital 1645 (28.0) 654 (27.8) 473 (25.0) 328 (24.2) 190 (65.3)
Per patient
N patients with visits 4736 1901 1559 1061 215
N of visits per patient (mean (SD)) 1.24 (0.67) 1.24 (0.68) 1.21 (0.61) 1.28 (0.71) 1.35 (0.84)
Year of inclusion (median [IQR]) 2017 [2012, 2021] 2015 [2011, 2020] 2017 [2012, 2021] 2018 [2013, 2022] 2022 [2021, 2023]
Table 3: Characterisation of the population of newly participating patients throughout 2023.
*dates of birth are only available in the format Year-Month. Ages were calculated while under the assumption everyone was born on the 15th of the month.
Variable Level Overall RA axSpA PsA GCA/PMR
N of patients 622 158 216 149 99
Age* at inclusion (median [IQR]) 54 [41, 65] 59 [48, 66] 42 [33, 51] 55 [44, 62] 74 [66.50, 79.50]
Years since symptom onset (median [IQR]) 6.06 [1.65, 13.43] 4.41 [1.82, 9.69] 9.81 [3.51, 16.55] 8.70 [4.42, 15.16] 0.37 [0.12, 1.69]
Years since diagnosis (median [IQR]) 2.03 [0.47, 6.80] 2.92 [1.08, 6.80] 2.61 [0.62, 8.42] 3.35 [1.05, 9.30] 0.16 [0.02, 1.04]
Type of institution (%) hospital 116 (18.6) 26 (16.5) 43 (19.9) 23 (15.4) 24 (24.2)
private practice 284 (45.7) 82 (51.9) 105 (48.6) 84 (56.4) 13 (13.1)
university hospital 222 (35.7) 50 (31.6) 68 (31.5) 42 (28.2) 62 (62.6)
Table 4: Characterisation of the population that contributed to SCQM via mySCQM self-observations throughout 2023.
*refers to patients that used the app in 2023, but not in 2022.
**refers to the unbroken string of years with at least one entry by that patient.
Variable Level Overall RA axSpA PsA GCA/PMR
N of entries 18104 6756 6774 4271 303
Entry number within patient (%) 1st entry 272 (1.5) 69 (1.0) 130 (1.9) 56 (1.3) 17 (5.6)
2nd to 10th 2046 (11.3) 547 (8.1) 934 (13.8) 457 (10.7) 108 (35.6)
11th to 40th 9904 (54.7) 4005 (59.3) 3368 (49.7) 2391 (56.0) 140 (46.2)
41th to 100th 5598 (30.9) 2090 (30.9) 2174 (32.1) 1296 (30.3) 38 (12.5)
101th entry or higher 284 (1.6) 45 (0.7) 168 (2.5) 71 (1.7) 0 (0.0)
Per patient
N patients with entries 2543 935 1012 564 32
N of entries per patient (mean (SD)) 7.12 (5.28) 7.23 (4.98) 6.69 (5.40) 7.57 (5.20) 9.47 (9.18)
User history (%) New user 272 (10.7) 69 (7.4) 130 (12.8) 56 (9.9) 17 (53.1)
Ongoing user 2173 (85.5) 826 (88.3) 837 (82.7) 495 (87.8) 15 (46.9)
Returning* user 98 (3.9) 40 (4.3) 45 (4.4) 13 (2.3) 0 (0.0)
Years of continued** usage (mean (SD)) 3.18 (1.98) 3.26 (1.88) 3.24 (2.12) 3.07 (1.83) 0.59 (0.71)
Year of last visit (median [IQR]) 2023 [2022, 2023] 2023 [2021, 2023] 2023 [2022, 2023] 2023 [2022, 2023] 2023 [2023, 2023]

Contributing Institutions

The SCQM registry relies on the tireless work made by our many contributing institutions. Within Table 5, Table 6 and Table 7 we showcase those hospitals and practices that contributed the most towards the mission of the SCQM, both in 2023 and its entire existence, for visits, inclusions and new mySCQM users respectively. Note that these numbers include the special data collection for unclassified arthritis and not just the main research cohorts.

Table 5: Ranking of contributing institutions based on their visits.
*example: “Cabinet Max Muster is 11th this year and was 13th last year, thus they get a +2 because they gained two places”.
**determined based on absolute numbers.

(a) 2023, Cutoff: 100 visits
Rank Institution Type of institution Canton Change from 2022*
1 Inselspital Bern UH BE
2 Universitätsspital Zürich UH ZH
3 Centre hospitalier universitaire vaudois UH VD
4 Rheuma Basel PP BS +3
5 Hôpitaux universitaires de Genève UH GE -1
6 Praxis Dr. Manuel Klöti PP LU
7 Kantonsspital St. Gallen H SG +1
8 Praxis Mathieu, Solothurn PP SO +1
9 Rheumazentrum Laufen, Laufen PP BL +3
10 Praxis Zajec, Wettingen PP AG
11 Ultraschall Zentrum Rheumatologie, Basel PP BS +4
12 Hôpital La Chaux-de-Fonds H NE +2
13 Praxis Hüllstrung/Iseli PP BL -2
14 Universitätsspital Basel UH BS -9
15 OsteoRheumaBern PP BE -2
16 Rheumatologie im Zürcher Oberland, Uster PP ZH
17 Rheumapraxis Sursee, Sursee PP LU +3
18 rheuma-bern PP BE
19 Cabinet Rozier Aubry PP VD +26
20 Kantonsspital Baden, Standort Brugg H AG -1
21 Praxis Tölle, Basel PP BS +1
22 Kantonsspital Aarau H AG +44
(b) Top 20 across entire SCQM
Rank Institution Type of institution Canton Best year** Change from 2022*
1 Universitätsspital Zürich UH ZH 2018
2 Inselspital Bern UH BE 2018
3 Hôpitaux universitaires de Genève UH GE 2017
4 Centre hospitalier universitaire vaudois UH VD 2023
5 Rheuma Basel PP BS 2023
6 Kantonsspital St. Gallen H SG 2015
7 Bethesda-Spital, Basel H BS 2016
8 Kantonsspital Aarau H AG 2017
9 Praxis Dr. Manuel Klöti PP LU 2019 +1
10 Universitätsspital Basel UH BS 2021 +1
11 Praxis Martin, Liestal PP BL 2012 -2
12 OsteoRheumaBern PP BE 2017
13 Kantonsspital Luzern, Luzern 16 H LU 2012
14 Kantonsspital Winterthur, Winterthur H ZH 2014
15 Medizinisches Zentrum Brugg, Brugg PP AG 2016
16 Hôpital La Chaux-de-Fonds H NE 2017 +1
17 Berner Rheumazentrum, Bern PP BE 2018 -1
18 Bürgerspital Solothurn, Solothurn H SO 2013
19 Praxis Hüllstrung/Iseli PP BL 2021 +2
20 Klinik Impuls, Wetzikon PP ZH 2021 -1

Table 6: Ranking of contributing institutions based on their inclusions.
*example: “Cabinet Max Muster is 11th this year and was 13th last year, thus they get a +2 because they gained two places”.
**determined based on absolute numbers.

(a) 2023, Cutoff: 10 inclusions
Rank Institution Type of institution Canton Change from 2022*
1 Inselspital Bern UH BE
2 Universitätsspital Zürich UH ZH +1
3 Universitätsspital Basel UH BS -1
4 Cabinet Rozier Aubry PP VD +21
5 Praxis Mathieu, Solothurn PP SO +3
6 Hôpital La Chaux-de-Fonds H NE +1
7 Rheuma Basel PP BS +3
8 Hôpitaux universitaires de Genève UH GE -2
9 Centre hospitalier universitaire vaudois UH VD -4
10 Ultraschall Zentrum Rheumatologie, Basel PP BS -1
11 Praxis Dr. Manuel Klöti PP LU
12 Hirslanden Klinik Birshof, Münchenstein H BL +14
13 Praxis Tölle, Basel PP BS +14
14 Rheumapraxis Sursee, Sursee PP LU -2
15 Stadtspital Triemli, Zürich H ZH +28
16 Rheumazentrum Laufen, Laufen PP BL +7
17 Universitätsklinik Balgrist, Zürich H ZH +11
(b) Top 20 across entire SCQM
Rank Institution Type of Institution Canton Best year** Change from 2022*
1 Universitätsspital Zürich UH ZH 1996
2 Inselspital Bern UH BE 2014
3 Centre hospitalier universitaire vaudois UH VD 2011
4 Hôpitaux universitaires de Genève UH GE 2017
5 Kantonsspital St. Gallen H SG 2012
6 Universitätsspital Basel UH BS 2016
7 Rheuma Basel PP BS 2009
8 Kantonsspital Aarau H AG 2016
9 Praxis Dr. Manuel Klöti PP LU 2013 +2
10 Bethesda-Spital, Basel H BS 2011 -1
11 Universitätsklinik Balgrist, Zürich H ZH 2008 +1
12 OsteoRheumaBern PP BE 2016 -2
13 Kantonsspital Winterthur, Winterthur H ZH 2013
14 Hôpital La Chaux-de-Fonds H NE 2015 +1
15 Kantonsspital Luzern, Luzern 16 H LU 2011 -1
16 Berner Rheumazentrum, Bern PP BE 2018
17 Bürgerspital Solothurn, Solothurn H SO 2010
18 Klinik Impuls, Wetzikon PP ZH 2005
19 Praxis Mathieu, Solothurn PP SO 2023 +7
20 Praxis Martin, Liestal PP BL 2012 -1

Table 7: Ranking of contributing institutions based on introducing both new and existing patients to mySCQM.
*example: “Cabinet Max Muster is 11th this year and was 13th last year, thus they get a +2 because they gained two places”.
**determined based on absolute numbers.

(a) 2023, Cutoff: 5 mySCQM activations
Rank Institution Type of institution Canton Change from 2022*
1 Universitätsspital Zürich UH ZH
2 Rheuma Basel PP BS +4
3 Centre hospitalier universitaire vaudois UH VD -1
4 Praxis Dr. Manuel Klöti PP LU +1
5 Inselspital Bern UH BE +2
6 Cabinet Rozier Aubry PP VD +33
7 Hôpitaux universitaires de Genève UH GE -4
8 Ultraschall Zentrum Rheumatologie, Basel PP BS +9
9 Hirslanden Klinik Birshof, Münchenstein H BL +7
10 Kantonsspital Baden, Standort Brugg H AG -1
11 Universitätsspital Basel UH BS +2
12 Praxis Tölle, Basel PP BS +7
13 Hôpital La Chaux-de-Fonds H NE -5
14 Rheumatologie im Zürcher Oberland, Uster PP ZH -4
15 Universitätsklinik Balgrist, Zürich H ZH +12
16 Kantonsspital Winterthur, Winterthur H ZH +5
17 Praxis Hüllstrung/Iseli PP BL -5
(b) Top 20 across entire SCQM
Rank Institution Type of Institution Canton Best year** Change from 2022*
1 Universitätsspital Zürich UH ZH 2020
2 Inselspital Bern UH BE 2020
3 Hôpitaux universitaires de Genève UH GE 2020
4 Rheuma Basel PP BS 2020
5 Praxis Dr. Manuel Klöti PP LU 2020
6 Centre hospitalier universitaire vaudois UH VD 2020 +1
7 Kantonsspital St. Gallen H SG 2020 -1
8 Praxis Hüllstrung/Iseli PP BL 2020
9 Rheumatologie im Zürcher Oberland, Uster PP ZH 2020 +1
10 OsteoRheumaBern PP BE 2020 -1
11 Klinik Impuls, Wetzikon PP ZH 2020
12 Hôpital La Chaux-de-Fonds H NE 2020
13 Universitätsspital Basel UH BS 2020
14 Praxis Tölle, Basel PP BS 2020
15 Universitätsklinik Balgrist, Zürich H ZH 2020
16 Praxis Martin, Liestal PP BL 2019
17 Studio Medico Badaracco Cattaneo, Lugano PP TI 2017
18 Kantonsspital Baden, Standort Brugg H AG 2020 +3
19 Praxis Widrig-Bernhardt, St. Gallen PP SG 2020 -1
20 Ultraschall Zentrum Rheumatologie, Basel PP BS 2020 +3

3 Maps of the SCQM

The SCQM is active across all of Switzerland thanks to its many participating institutions. Figure 2 provides a geographical look at this collection effort. Additionally, Figure 4 provides some descriptions of which kind of patient had a visit in 2023 split by canton and Figure 3 provides a look at the entire research cohort as of the snapshot of this report with each patient assigned to the location of their initial inclusion into the registry.

(a) Visits

(b) Inclusions

(c) Doctors that contributed visits

(d) Institutions that contributed visits

Figure 2: SCQM clinical data collection across Switzerland throughout 2023. Note that we do not track location during mySCQM use, thus preventing inclusion within these figures.

Figure 3: The entire cumulative SCQM cohort at the end of 2023. This figure matches the contents of Table 1.

(a) Patients split by mySCQM use

(b) Patients split by diagnosis

(c) Patients split by FU

(d) Patients split by whether they had a visit at an institution other than their original location of inclusion

Figure 4: Geographical characterization of patients with a visit in 2023. Patients who had visits in multiple cantons during 2023 are counted for the canton of their earliest visit throughout the year.

4 Cohort Demographics

The demographic distribution within our cohorts is depicted in Figure 5, structured in a way that allows comparisons between the subsets of patients tracked via visits and mySCQM respectively. Figure 6 provides a comparison of the self-assessed disease activity of patients across the population with visits in 2023. In Figure 7 we explore the overlap between the vsit and mySCQM subsets depicted in Figure 5. Finally, Figure 8 provides insight into the diagnostic delays of patients newly included this year.

(a) Patients who had a visit split by biological sex

(b) Patients who participiated in mySCQM split by biological sex