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axSpA in numbers

axSpA in numbers

Understanding the impact of axSpA on people’s lives

The data generated by IMAS demonstrates how living with axSpA can affect almost every part 
of a person’s life, from physical and emotional wellbeing to decisions about education, work 
and relationships.

You can read in more detail about these impacts in our global IMAS report.

0

Total number of participants1,2

#

55.4% females (n=3080)

#

44.6% males (n=2475)

2 responses did not indicate male or female

Age range:
18 – 87 years

mean = 44 years

Pre-diagnosis Diagnosis Diagnostic delay Living with axSpA Comorbidities Impact on employment Healthcare utilisation
and treatment Patients’ fears
and hopes

Standard deviation:
11.3 years*

*This means that for the majority of patients 
symptom onset occurs between 15.4 and 37.8 years2

#
0 Years

Mean age at symptom onset 26.8 years2

75 Years

Healthcare professionals visited before diagnosis:2

  • GP

    77.7%

  • Rheumatologist

    51.3%

  • Orthopaedist

    38.9%

  • Physiotherapist

    36.6%

  • Chiropractor

    12.5%

  • Osteopath

    12.3%

  • Other

    12.0%
#
#

On average, people visited 2.3 healthcare professionals before diagnosis'2

diagnosing healthcare professional:2
7/10
patients are diagnosed by a rheumatologist
Rheumatologist - %
Primary Care Physician - %
Orthopaedist - %
Physiotherapist - %
Other - %
diagnosing healthcare professional at REGIONAL LEVEL:2,3
Select a profession to find out more
Rheumatologist
Rheumatologist
PRIMARY CARE 
PHYSICIAN
Orthopaedist
Physiotherapist
OTHER
Europe
2499
(76.5%)
Asia
323
(53.9%)
North America
511
(66.4%)
Latin America
407
(74.3%)
South 
Africa
102
(70.8%)
Europe
413
(12.6%)
Asia
48
(8.0%)
North America
151
(19.6%)
Latin America
78
(14.2%)
South 
Africa
18
(12.5%)
Europe
187
(5.7%)
Asia
203
(33.9%)
North America
39
(5.1%)
Latin America
42
(7.7%)
South 
Africa
11
(7.6%)
Europe
36
(1.1%)
Asia
11
(1.8%)
North America
20
(2.6%)
Latin America
3
(0.5%)
South 
Africa
0
(0.0%)
Europe
130
(6%)
Asia
14
(2.3%)
North America
49
(6.4%)
Latin America
18
(3.3%)
South 
Africa
13
(9.0%)
Number and percentage of respondents from the region diagnosed by stated specialty
Select an area from the diagram to find out more

On average 
patients experience 
a diagnostic delay* of7.4 years2

* Diagnostic delay describes the length of time from onset of symptoms to a diagnosis

#

More than 45% wait 5 or more years for a diagnosis2

Total n = 1652

  • 9.2% experience
    11-15 years delay2

  • 13.6% experience 5-7 years delay2

  • 16.1% experience >15 years delay2

  • 19.7% experience 2-4 years delay2

  • 9.3% experience 8-10 years delay2

  • 32.2% experience 0-1 years delay2

  • 9.2%
  • 13.6%
  • 16.1%
  • 19.7%
  • 9.3%
  • 32.2%

mean diagnostic delay per country:2

Select a hotspot from the map or use the dropdown menu
Select a country
Select country
Spain
France
Canada
Norway
UK
Turkey
Russia
India
USA
Colombia
Brazil
South Africa
Italy
Philippines
Korea
Argentina
Taiwan
Netherlands
Slovenia
Austria
Switzerland
Germany
Belgium
Sweden
Mexico
Lithuania
Costa Rica
#
  • #
    Spain
    8.5 years
    Next country
  • #
    France
    6.9 years
    Next country
  • #
    Canada
    9.0 years
    Next country
  • #
    Norway
    10.6 years
    Next country
  • #
    UK
    11.6 years
    Next country
  • #
    Turkey
    4.2 years
    Next country
  • #
    Russia
    6.9 years
    Next country
  • #
    India
    5.1 years
    Next country
  • #
    USA
    8.8 years
    Next country
  • #
    Colombia
    5.7 years
    Next country
  • #
    Brazil
    8.6 years
    Next country
  • #
    South Africa
    10.8 years
    Next country
  • #
    Italy
    5.2 years
    Next country
  • #
    Philippines
    5.8 years
    Next country
  • #
    Korea
    2.0 years
    Next country
  • #
    Argentina
    6.6 years
    Next country
  • #
    Taiwan
    2.9 years
    Next country
  • #
    Netherlands
    7.0 years
    Next country
  • #
    Slovenia
    7.8 years*
    * Data from fewer than 100 people
    Next country
  • #
    Austria
    4.7 years*
    * Data from fewer than 100 people
    Next country
  • #
    Switzerland
    3.5 years*
    * Data from fewer than 100 people
    Next country
  • #
    Germany
    2.7 years*
    * Data from fewer than 100 people
    Next country
  • #
    Belgium
    3.6 years*
    * Data from fewer than 100 people
    Next country
  • #
    Sweden
    7.6 years*
    * Data from fewer than 100 people
    Next country
  • #
    Mexico
    2.9 years*
    * Data from fewer than 100 people
    Next country
  • #
    Lithuania
    6.8 years*
    * Data from fewer than 100 people
    Next country
  • #
    Costa Rica
    0.2 years*
    * Data from fewer than 100 people
    Next country
Impact of diagnostic delay

Delay to diagnosis negatively impacts physical health in a range of different ways. People experience higher disease activity, more physical limitations and worse spinal stiffness.

Disease activity is a measure of the ways in which a disease impacts your body. The Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) is a validated, commonly used measure of disease activity for axSpA. It consists of 6 questions answered by patients about how they have felt during the previous week: Fatigue, Spinal pain, Joint pain/swelling, Areas of localised tenderness, Morning stiffness duration, and Morning stiffness severity.

BASDAI

A BASDAI score of below 4 is considered low disease activity, with 4 and above representing sub-optimal control of the disease. The higher the score, the more active and poorly controlled the disease is.

Disease Activity3
Mean diagnostic delay, years
6.6
Low disease activity
7.7
Sub-optimal control

People with longer delays to diagnosis reported higher disease activity.

General Stiffness Index

This index, developed specifically for this study, assesses the degree of stiffness experienced by patients in the spinal column, distinguishing between the cervical, dorsal, and lumbar areas. Possible responses range from the least to the most affected column (1, without stiffness; 2, mild stiffness; 3, moderate stiffness; and 4, severe stiffness), total scores are obtained by adding together the responses in each of the areas of the spine without weighting resulting in a scale ranging from 3 to 12. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6449283]

Spinal StiffnessIndex3
Mean diagnostic delay, years
3.7
Without stiffness
5.4
Mild
7.5
Moderate
9.1
Severe

A longer delay to diagnosis was associated with greater spinal stiffness and functional limitation.

Functional Limitation Index (FLI)3
Mean diagnostic delay, years
6.2
Low
8.2
Medium
9.1
High

Functional limitation is a measure of how much axSpA impacts your ability to do daily tasks like tying shoelaces, eating meals and driving.

#

2 year
 longer delay for women3

Mean diagnostic delay: 8.5 years (SD: 9.7) for women vs. 6.1 years (SD: 7.8) for men2

mean diagnostic delay per age group:2

  • #

    18-34

    #

    3.9
    years

  • #

    35-51

    #

    7.6
    years

  • #

    52-68

    #

    10.3
    years

  • #

    >68

    #

    11.0
    years

Physical disease burden
AxSpA puts a huge burden on your body.
BASDAI

A BASDAI score of below 4 is considered low disease activity, with 
4 and above representing sub-optimal control of the disease. The higher the score, the more active and poorly controlled the disease is.

Roughly 3 out of 4 people report an average
BASDAI
score of 4 points or more out of 10, which is the threshold for sub-optimally controlled disease.4
The 6 questions from the BASDAI can give a good indication of how axSpA is impacting a person.
Looking closer we can see that some factors cause greater disease burden than others:3
Mean 
BASDAI score
4
SUB-OPTIMALLY 
CONTROLLED DISEASE
Level of fatigue
/10
Neck, back, hip pain
/10
Morning stiffness
/10
Discomfort
/10
Pain other than neck, back and hip
/10
Length of time of morning stiffness
/10

There are different factors that may influence clinical disease activity but the relationship between these factors is complex and may vary from person to person. Some factors include:5-7

Group-146
gender
clock-5-1
time to diagnosis
weight-scale-2
BMI
smoking-1
smoking
brain-1
mental health (anxiety, depression)
walk-1-1
physical activity
research-1
treatment history (time to first treatment, number of different times the treatment was switched, treatment adherence/compliance)

While IMAS cannot draw conclusions on the causal relationship between the different factors and clinical disease activity, our results underline the complexity of this concept in axSpA and highlight the need for a holistic approach in managing the disease.

AxSpA most often leads to pain and swelling in the axial regions of the body (lower back, hips, spine, and sacroiliac joints) but patients also reported swelling and pain in other parts of the body:2

Shoulders
43 %
Dorsal Region
45.5 %
Thorax
32.2 %
Vertebrae
22 %
Pelvis
35.8 %
Metacarpals
29 %
Wrists
25.7 %
Phalanges
33.3 %
Knee joints
43.4 %
Ankles
29.9 %
Toe joints
25.8 %
Sole of foot
30.9 %
Additional body swelling areas:
Achillies tendon - 19.4%
Mandible - 17.5%
Neck - 15.5%
Others - 14.2%
Dorsum of foot - 13.9%
Tendons - 10.9%
Elbows - 4.4%
Joints in the feet - 4.0%
Digestive tract - 2.9%
Skin - 2.0%
Most people with axSpA experience some degree of spinal stiffness, with the lumbar region reported as being the most severe:2
Select a region of the spine to find out more
Cervical region
Frame-248-3
DORSAL region
Frame-248-1
LUMBAR region
Frame-248-2

patients report a number of comorbidities:3

  • Sleep disorders 43.4%

    #

  • Anxiety 40.5%

    #

  • Depression 37.2%

    #
  • Obesity / overweight 31.4%
  • Hypertension 27.5%
  • Serious infections requiring antibiotics 20.8%
  • Hypercholesterolaemia 20.4%
  • Fibromyalgia 19.4%
  • Psoriatic arthritis 16.5%
  • Irregular heartbeat 16.1%
  • Spinal or other fractures 13.2%

Conditions commonly occurring 
with axSpA3

  • Uveitis 26.7% n=4382

  • Ulcerative Colitis 10.3% n=4382

  • Crohn’s Disease 9.3% n=4382

59.4%

of patients were at risk 
of psychological distress2

A General Health Questionnaire (GHQ-12) score higher than 3 signifies risk of psychological distress, for example, depression and anxiety.

Risk of psychological distress is significantly higher for individuals who are:3
  • Younger
  • Female
  • Single / divorced
  • Lower income
circle icon
axSpA flares limited patients’ ability to carry out / engage in everyday activities including:2:
  • walk-1
    78.7% of patients had limitation when performing physical exercise
  • clear-data-1
    73.3% of the patients had limitations in housework
  • clothing-hanger-1
    68.4% of the patients had limitations when dressing or undressing
  • bed-double-1
    70.6% of the patients had limitations when getting up from bed
  • stairs-1
    70.6% of the patients had limitations when going 
up stairs
participants at risk of psychological distress reported:3
  • Higher disease activity
  • More severe spinal stiffness
  • Reduced ability to perform daily activities

Other restricted daily activities reported:2
Tying shoe laces, shopping, walking, intimate relations, driving, cooking, taking a bath,
public transportation, personal grooming, going to the toilet, going to the doctor, eating.

Patients report worsening relationships with:3:

  • 45.1%

    Colleagues

  • 35.1%

    Friends

  • 31.3%

    Spouse or partner

  • 23.2%

    Family

  • 19.3%

    Neighbours

Since onset of symptoms
  • %

    reported that their disease influenced their job choice3

  • %

    moved to another job2

  • %

    had difficulties finding a job due to the disease3

71 %

of employed participants reported that they had suffered work-related issues in the past 12 months

    Work-related issues reported2,3:

  • Taking sick leave

    40.2%

  • Missing work for doctor’s appointments

    35.6%

  • Difficulty in fulfilling work hours

    32.7%

  • Asking for days off

    30.9%

  • Reducing work hours

    25.3%

  • Professional life suffered

    15.4%

  • Occasionally changing work shift

    14.7%

  • Had to give up previous job

    13.3%
#

1 in 3 patients have never discussed treatment goals with their healthcare professional2

the most common treatment goals reported are to:2,3

  • %

    Eliminate / reduce pain

  • %

    Stop disease progression & structural damage

  • %

    Improve mobility

  • %

    Improve Quality of Life*

    * including mood, sleep, autonomy, ability to work and physical activity

HEALTHCARE UTILISATION and treatment

As the severity of disease activity increases, so do the number of annual visits to physiotherapists, family doctors, and other healthcare professionals.

Mean number of annual visits2,3

Low Disease Activity 
 (n=1046)
BASDAI < 4
Sub-Optimally Controlled Disease (n=4503)
BASDAI ≥ 4
Frame-348
Physiotherapist
8.0
P-value <0.001
13.7
P-value <0.001
Frame-349
Rheumatologist
3.0
P-value <0.001
5.2
P-value <0.001
Frame-350
Primary care physician
2.7
P-value <0.001
3.7
P-value <0.001
Frame-351
Psychologist/ Psychiatrist
1.9
P-value <0.001
3.0
P-value <0.001
Frame-352
Clinical nurse
1.7
P-value <0.001
2.9
P-value <0.001
Reported treatments ever taken vary between individuals and geographical regions.2
MEDICATIONS
Yes (%)
NO (%)
NSAIDs
78.6
21.4
B/tsDMARDs
48.8
51.2
csDMARDs
43.6
56.4

NSAIDs, Non-steroidal anti-inflammatory drugs; B/tsDMARDS, Biologic and targeted synthetic disease-modifying anti-rheumatic drugs; csDMARDS, Conventional synthetic disease-modifying anti-rheumatic drugs

Select a drug type from the dropdown menu to show the regional breakdown:
select a DRUG TYPE
NSAIDs
B/tsDMARDs
csDMARDs
North America
82.6%3 yes
17.4%3 no
Latin America
90.1%3 yes
9.9%3 no
Europe
75.4%3 yes
24.6%3 no
South Africa
94.4%3 yes
5.6%3 no
Asia
74.7%3 yes
25.3%3 no
North America
61.8%3 yes
38.2%3 no
Latin America
65.5%3 yes
34.5%3 no
Europe
45.0%3 yes
55.0%3 no
South Africa
42.5%3 yes
57.5%3 no
Asia
37.0%3 yes
63.0%3 no
North America
40.2%3 yes
59.8%3 no
Latin America
65.4%3 yes
34.6%3 no
Europe
36.9%3 yes
63.1%3 no
South Africa
79.3%3 yes
20.7%3 no
Asia
52.3%3 yes
47.7%3 no
For patients, the most frequent fears and hopes related to axSpA were:2,3:
Fears
Hopes
  • Disease progression
    55.9%
  • Suffering pain
    55.1%
  • Loss of mobility
    48.7%
  • Loss of independence
    44.8%
  • Stiffness
    42.1%
  • Impact of disease on everyday activities
    39.3%
  • Loss of job / inability to work
    30.7%
  • Loss of quality of life
    26.7%
  • Adverse events due to medication
    21.9%
  • Suffering other related diseases
    20.7%
  • Medication doesn't work / stops working
    18.3%
  • Uncertainty about the future
    17.9%
  • Sleep interruptions
    17.5%
  • Inability to live with condition / give up
    17.2%
  • Anxiety / sadness
    17.2%
  • Pass the disease to children
    15.6%
  • Financial concerns
    15.5%
  • Social isolation
    10.9%
  • Complications during pregnancy
    9.9%
  • Eliminate pain
    54.2%
  • Stop disease progression
    51.8%
  • New techniques / drugs to fight disease
    42.5%
  • Improve mobility
    38.0%
  • Be treated / cured
    36.7%
  • Live without constraints / limitations
    36.6%
  • Exercise
    29.5%
  • Eliminate / reduce stiffness
    28.3%
  • Eliminate / reduce flares
    25.1%
  • Eliminate / reduce fatigue
    23.5%
  • Effective treatment
    17.7%
  • Understanding by family members
    13.3%
  • Understanding at work by colleagues and superiors
    11.2%
    • Additional hopes include: Improve general condition / improvement 8.7%, Improve medical care 2%, Improve mood 1.8%, 
Be able to work 1.7%
References:
  1. Garrido-Cumbrera M, Poddubnyy D, Sommerfleck F, et al. POS0298 THE INTERNATIONAL MAP OF AXIAL SPONDYLOARTHRITIS (IMAS). RESULTS FROM THE PERSPECTIVE OF 5,557 PATIENTS FROM 27 COUNTRIES AROUND THE WORLD. Annals of the Rheumatic Diseases 2023;82:391-392.
  2. ASIF data on file
  3. The burden of axial spondyloarthritis: a global patient perspective, January 2024; Axial Spondyloarthritis International Federation. https://asif.info/imas/imas-global-report
  4. Garrido-Cumbrera M, Navarro-Compán V, Sommerfleck F, et al. AB1010 WHICH FACTORS ARE ASSOCIATED WITH CLINICALLY HIGH DISEASE ACTIVITY IN AXIAL SPONDYLOARTHRITIS? RESULTS FROM THE INTERNATIONAL MAP OF AXIAL SPONDYLOARTHRITIS (IMAS). Annals of the Rheumatic Diseases. 2023;82:1726-1727.
  5. Zurita Prada PA, Urrego Laurín CL, Guillén Astete CA, et al. V. Influence of smoking and obesity on treatment response in patients with axial spondyloarthritis: a systematic literature review. Clin Rheumatol. 2021 May;40(5):1673-1686. doi: 10.1007/s10067-020-05319-6. Epub 2020 Sep 3. PMID: 32880827.
  6. Ramiro S, Nikiphorou E, Sepriano A, et al. ASAS-EULAR recommendations for the management of axial spondyloarthritis: 2022 update. Ann Rheum Dis. 2023 Jan;82(1):19-34. doi: 10.1136/ard-2022-223296. Epub 2022 Oct 21. PMID: 36270658.
  7. Benavent D, Capelusnik D, Ramiro S, et al. Does gender influence outcome measures similarly in patients with spondyloarthritis? Results from the ASAS-perSpA study. RMD Open. 2022 Sep;8(2):e002514. doi: 10.1136/rmdopen-2022-002514. PMID: 36096523; PMCID: PMC9472201.
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