axSpA in numbers1

Understanding the impact of axSpA on people’s lives through the International Map of axSpA (IMAS)
The data generated by IMAS demonstrates how living with axSpA can affect every part of a person’s life, from physical and emotional wellbeing to the impact on education, work and relationships.

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Total number of participants in europe1

The following results are exclusively from the European dataset
of the IMAS survey.
#

1,746 females (61.4%)1

#

1,100 males (38.7%)1

Age range:
18 – 85 years1

Mean age = 44 years1

Standard deviation:
11.2 years1*

*This means that symptom onset occurs when most patients are between 15.4 and 37.8 years old

#
0 Years

Mean age at symptom onset 26.6 years old1

70 Years

Healthcare professionals visited before diagnosis1:

  • GP

    83.4%
  • Rheumatologist

    66.1%
  • Physiotherapist

    46%
  • Orthopaedist

    34.5%
  • Osteopath

    16.3%
  • Chiropractor

    8.6%
  • Other

    13.6%
#
#

There is a high frequency of non-specialist referrals pre-diagnosis2

On average patients experience a diagnostic delay of 7.4 years2

#

More than 50% wait 5 or more years for a diagnosis2

Total n = 26522
  • 13.4% (356) experience
    11-15 years delay2

  • 14.5% (385) experience 5-7 years delay2

  • 18.6% (492) experience >15 years delay2

  • 20.7% (548) experience 2-4 years delay2

  • 9.3% (246) experience 8-10 years delay2

  • 29.5% (782) experience 0-1 years delay2

  • 13.4%
  • 14.5%
  • 18.6%
  • 20.7%
  • 9.3%
  • 29.5%

mean diagnostic delay per country2:

  • Sweden
    7.6 years*2

  • Norway
    10.6 years2

  • Germany
    2.7 years*2

  • Belgium
    3.6 years*2

  • Switzerland
    3.5 years*2

  • Slovenia
    7.8 years*2

  • Spain
    8.5 years2

  • United Kingdom
    Recruiting participants currently2

  • Netherlands
    7.0 years2

  • Austria
    4.7 years*2

  • Italy
    5.2 years2

  • France
    6.9 years2

  • Russia
    6.9 years2

*Data from fewer than 100 people. Smaller sample size may not be representative of national average

diagnosing healthcare professional3:

4/5 patients are diagnosed by a rheumatologist

  • Rheumatologist - 78.4%
  • GP - 14.9%
  • Orthopaedist - 5%
  • Physiotherapist - 1.1%
  • Other - 0.6%

mean diagnostic delay per age group3:

#

2 year longer delay for women3

Mean diagnostic delay: 8.24 years (SD: 8.9) for women vs. 6.14 years (SD: 7.4) for men

  • #

    18-34

    #

    4.4
    years

  • #

    35-51

    #

    7.9
    years

  • #

    52-68

    #

    9.5
    years

  • #

    >68

    #

    7.3
    years

#

1 in 3 patients have never discussed treatment goals with their healthcare professional1

the most common treatment goals reported are4:

  • %

    Eliminate / reduce pain

  • %

    Improve Quality of Life*

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

  • %

    Improve mobility

  • %

    Stop disease progression & structural damage

patients report a number of comorbidities1,4:

  • Sleep disorders 50.48%

    #
  • Anxiety 38.6%

    #
  • Depression 33.87%

    #
  • Obesity / overweight 31.3%
  • Hypertension 26.19%
  • Hypercholesterolaemia 19.66%
  • Serious infections requiring antibiotics 18.75%
  • Irregular heartbeat 16.98%
  • Psoriatic arthritis 16.94%
  • Fibromyalgia 16.17%
  • Spinal or other fractures 11.5%

Conditions commonly occurring with axSpA2

  • Uveitis 22.4% (n=469)

  • Ulcerative Colitis 8.4% (n=175)

  • Crohn’s Disease 7.5% (n=154)

62%

of patients were at risk of psychological distress1,5

A General Health Questionnaire (GHQ-12) score higher than 3 signifies risk of psychological distress.

Psychological distress: poor mental health, anxiety, depression etc.

Risk of psychological distress significantly higher for individuals who are1,5:
  • Younger
  • Female
  • Single / divorced
  • Lower income
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axSpA flares limited patients’ ability to carry out / engage in everyday activities including4:
  • Physical exercise - 75%
  • Cleaning - 71%
  • Getting dressed - 69%
  • Getting out of bed - 69%
  • Going up stairs - 68%
participants at risk of psychological distress reported1:
  • Higher disease activity
  • More severe spinal stiffness
  • Reduced ability to perform daily activities
  • Higher number of comorbidities

Other restricted daily activities reported:
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.

Since symptom onset, patients report worse relationships with6:

  • 44.7%

    Colleagues

  • 35.6%

    Friends

  • 30.4%

    Spouse

  • 23.6%

    Family

  • 18.4%

    Neighbours

  • %

    reported that their disease influenced their job choice*1,7

  • %

    moved to another job1,7

  • %

    had difficulties finding a job due to the disease1,7

67.8 %

of employed participants reported that they had suffered work-related issues in the past 12 months1,7

    Work-related issues reported1,7:

  • Taking sick leave

    56.3%
  • Difficulty in fulfilling work hours

    44.4%
  • Missing work for doctor’s appointments

    34.4%
  • Asking for days off

    31.6%
  • Reducing work hours

    25.8%
  • Occasionally changing work shift

    18.9%
  • Professional life suffered

    16.7%
  • Had to give up previous job

    8.8%
  • Other

    8.1%
*The most common occupations are jobs requiring university qualifications and skilled non-manual and executive positions given the nature of the disease and its associated limitations. Common symptoms of axSpA such as pain, fatigue, and reduced physical function and mobility can significantly impact an individual’s ability to undertake physical activity therefore jobs involving manual labour are less common.
For patients, the most frequent fears and hopes related to axSpA were4,8:
  • Disease progression
    32.9%
  • Suffering pain
    30.5%
  • Loss of mobility
    30%
  • Loss of independence
    29.2%
  • Loss of job / inability to work
    24.2%
  • Impact of disease on everyday activities
    22.3%
  • Stiffness
    18.5%
  • Social isolation
    13%
  • Complications during pregnancy / infertility
    5.1%
  • Suffering other diseases related to SpA
    3.8%
  • Uncertainty about the future
    3.8%
  • Loss of quality of life
    3.6%
  • Adverse events due to medication
    3%
  • Stop disease progression
    32.5%
  • Eliminate pain
    30.7%
  • Effective treatment
    23.3%
  • Improve quality of life
    22%
  • Be treated / cured
    20.1%
  • Live without constraints / limitations
    18.9%
  • Improve mobility
    17.8%
  • Exercise
    15.7%
  • Improve general condition / improvement
    8.7%
  • New techniques / drugs to fight disease
    5.9%
  • Improve medical care
    2%
  • Improve mood
    1.8%
  • Be able to work
    1.7%
Additional fears include: Financial concerns 1.8%, medication doesn’t work / stops working 1.6%, inability to take care of family / children 1.5%, premature death 1%, paralysis 1%, pass the disease to children 0.9%, anxiety / sadness 0.9%, inability to live with condition / give up 0.6%, sleep interruptions 0.2%.
Additional hopes include: Eliminate / reduce flares 1.1%, eliminate / reduce stiffness 1.1%, eliminate / reduce fatugue 0.9%, be able to take care of family / children 0.4%, children do not inherit disease 0.4%, do not develop other related diseases 0.3%, improve sleeping 0.2%, understanding by family members 0.2%, understanding at work by colleagues and superiors 0.2%, be able to have children 0.1%.
References:
  1. Garrido-Cumbrera, M., Poddubnyy, D., Gossec, L. et al. The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries. Curr Rheumatol Rep 21, 19 (2019). https://doi.org/10.1007/s11926-019-0819-8
  2. Marco Garrido-Cumbrera, Victoria Navarro-Compán, Christine Bundy, Raj Mahapatra, Souzi Makri, José Correa-Fernández, Laura Christen, Carlos Jesús Delgado-Domínguez, Denis Poddubnyy, on behalf of the EMAS Working Group, Identifying parameters associated with delayed diagnosis in axial spondyloarthritis: data from the European map of axial spondyloarthritis, Rheumatology, 2021; keab369, https://doi.org/10.1093/rheumatology/keab369
  3. Garrido-Cumbrera M, Poddubnyy D, Bundy C on behalf of IMAS working group, et al. POS0244 PATIENT JOURNEY WITH AXIAL SPONDYLOARTHRITIS: CRITICAL ISSUES FROM THE PATIENT PERSPECTIVE. RESULTS FROM THE EUROPEAN MAP OF AXIAL SPONDYLOARTHRITIS (EMAS). Annals of the Rheumatic Diseases 2021;80:343-344.
  4. Novartis Data on File
  5. Garrido-Cumbrera M, Galvez-Ruiz D, Gossec L, Navarro-Compán V, Poddubnyy D, Makri S, Mahapatra R, Plazuelo-Ramos P, Delgado Dominguez CJ, Bundy C. Psychological Distress in Patients with Axial Spondyloarthritis in Europe. Results from the European Map of Axial Spondyloarthritis Survey [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 10). https://acrabstracts.org/abstract/psychological-distress-in-patients-with-axial-spondyloarthritisin-europe-results-from-the-european-map-of-axial-spondyloarthritis-survey/. Accessed October 18, 2018.
  6. Garrido-Cumbrera M, Navarro-Compán V, Bundy C on behalf of EMAS Working Group, et al. SAT0374 ONSET OF AXIAL SPONDYLOARTHRITIS REPERCUSSIONS ON PATIENTS’ SOCIAL AND FAMILY LIFE: RESULTS FROM THE EUROPEAN MAP OF AXIAL SPONDYLOARTHRITIS (EMAS). Annals of the Rheumatic Diseases 2020;79:1134-1135.
  7. Garrido-Cumbrera, M., Bundy, C., Navarro-Compán, V., Makri, S., Sanz-Gómez, S., Christen, L., Mahapatra, R., Delgado-Domínguez, C.J. and Poddubnyy, D. (2021), Patient-reported Impact of Axial Spondyloarthritis on Working Life: Results from the EMAS survey. Arthritis Care Res. Accepted Author Manuscript. https://doi.org/10.1002/acr.24426
  8. Garrido-Cumbrera M, Gossec L, Poddubnyy D, et al. SAT0328 PATIENT-REPORTED ATTITUDES TOWARDS AXIAL SPONDYLOARTHRITIS: RESULTS FROM THE EMAS SURVEY. Annals of the Rheumatic Diseases 2019;78:1242-1243.
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