Table 3.
Overview of selected patient-reported outcome measures in axSpA across registries
| Registry | Patient global assessment | Patient pain assessment | Patient fatigue assessment | BASDAI/BASFI | ||||
|---|---|---|---|---|---|---|---|---|
| Wordinga | Scaleb | Wordinga | Scaleb | Wordinga | Scaleb | Registered | Scaleb | |
| ATTRA (Czechia) | Please indicate below how you feel when you consider all the ways in which your illness now affects you | VAS and NRS (0–100) | How much pain has your illness caused you DURING THE PAST WEEK? | NRS (0–100) | How much of a problem has unsual fatigue been for you DURING THE PAST WEEK? | NRS (0–100) | Yes/yes [25] | VAS |
| DANBIO (Denmark) | How does the arthritis affect your overall life at the moment? | VAS | How much pain due to arthritis do you have at the moment? | VAS | How tired are you at the moment? | VAS | Yes/yes [26] | VAS |
| ESRBTR (Estonia) | Patient´s evaluation of disease activity on a VAS ranging from “no activity” to “very active”. | VAS | Patient´s evaluation of pain on a VAS ranging from “no pain” to “strong pain”. | VAS | - | - | Yes/no | NRS |
| ROBFIN (Finland) |
How is your health condition today? VAS ranging from “very good to “worst possible” |
VAS | How much pain have you been experiencing during last week? | VAS | How much fatigue have you been experiencing during last week? | VAS | Yes/yes [27] | VAS |
| ICEBIO (Iceland) | Put a mark on the line below which illustrates the disease activity on your health due to your disease during the last week | VAS | Put a mark on the line below which illustrates the pain due to your disease during the last week | VAS | Put a mark on the line below which illustrates the fatigue due to your disease during the last week | VAS | Yes/yes | VAS |
| GISEA (Italy) | Considering all the ways your arthritis has affected you, how active do you feel your arthritis is today on a scale ranging from 0 to 100? | NRS 0–100 | Numerical rating scale ranging from 0 (no pain) to 100 (worst imaginable pain) measuring actual pain intensity during the last 24 hours | NRS 0–100 | - | - | Yes/yes | VAS |
| AmSpA (Netherlands) | How active was your disease the last week? | NRS | How much back pain did you have during the night the last week? | NRS | How tired were you the last week? | - | Yes/yes | VAS |
| NOR-DMARD (Norway) | We kindly ask you to evaluate the activity in your arthritis during the last week. Considering all the symptoms you have had, how would you evaluate your condition? | VAS | How much pain have you had during the last week? | VAS | To what degree has a feeling of unusual tiredness or exhaustion been a problem for you during the last week? | VAS | Yes/no | VAS |
| Reuma.pt (Portugal) | Considering the way the disease disturbs you, how did you feel during the last week? | NRS and VAS | Please indicate the level of pain that you felt in your spine at any moment (day or night) during last week | VAS | FACIT questionnaire | - | Yes/yes [28] | VAS |
| RRBR (Romania) | Please rate how much the disease is globally affecting you, taking into account all the aspects of the disease (e.g., psoriasis and arthritis) over the past week | NRS | c | - | d | - | Yes/no | VAS |
| Biorx.si (Slovenia) | How does your disease affect you today? | NRS | How severe was the pain in the past week? | NRS | - | - | Yes/yes | NRS |
| BIOBADASER (Spain) | No specific wording, depends on each center | NRS | - | - | - | - | Yes/no [29] | VAS |
| SRQ (Sweden) | How have you felt in the last week, in general, given your rheumatic disease? | VAS | How much pain have you had in the last week due to your rheumatic disease? | VAS | How tired have you been in the last week due to your rheumatic disease? | VAS | Yes/yes [30, 31] | VAS |
| SCQM (Switzerland) | How active is your disease today? | NRS | How would you rate your overall pain in the past 7 days? | NRS | d | - | Yes/yes | VAS |
| BSRBR-AS (UK) | Bath Ankylosing Spondylitis Global Score (BAS-G) | - | Pain question in SF12, EQ5D, pain 100 mm VAS | - | Chalder Fatigue Scale | - | Yes/yes [32, 33] | VAS |
NRS Numeric rating scale from 0 to 10 unless stated otherwise, VAS Visual analog scale from 0 to 100 mm, BASDAI Bath Ankylosing Spondylitis Disease Activity Index, BASFI Bath Ankylosing Spondylitis Functional Index
aThe wording is based on a translation from the original language (if not English) in the online survey and follow-up interviews
bScales are evaluated visually using graphic presentation of the respective patient assessments in secondary anonymized baseline data from initiation of the first biologic (b) or targeted synthetic (ts) disease-modifying anti-rheumatic drug (DMARD) treatment on patients with a clinical diagnosis of axial spondyloarthritis, 18 years or older, followed in one of the participating registries since the start of their first b/tsDMARD between 2000 to 2021. Sweden has provided data on Secukinumab treated patients only
cBASDAI pain question
dBASDAI fatigue question