A NEED FOR GLOBAL AWARENESS to lift the burden of psoriatic arthritis

on the individual and society

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SummaryThe International Federation of Psoriasis Associations, IFPA, asks for greater awareness and global recognition of psoriatic arthritis and its impact on individuals and society.

 This issue brief aims to draw attention to psoriatic arthritis, a chronic disabling inflammatory noncommuni­cable disease, and to stimulate policy dialogue to help lift the burden on the individual and society. Psoriatic arthritis, which is the second most common inflam­matory joint disease1, can have a great ne­gative impact on an individual’s health and quality of life and imposes a significant socio economic burden. Many people who suffer from psoriatic arthritis are unable to work due to this disabling condition and require frequent and costly medication and treatments.

The international community, govern­ments, health care professionals and the public need to recognize the burden of psoriatic arthritis and ensure that people with psoriatic arthritis receive a timely diagnosis, sufficient treatment, and the support and understanding they need in order to be able to participate fully and equally in society.

The burden of psoriatic arthritis on the individualPsoriatic arthritis (PsA) is a chronic inflammatory arthritis that occurs in up to 30 percent of patients with psoriasis, affecting men and women almost equally. In the vast majo­rity of cases PsA develops after the appearance of psoriasis, although it can manifest even prior to skin manifestations.2

PsA causes stiffness, swelling and pain in and around the joints, and can lead to extensive erosive and deforming joint damage,3 which was also highlighted by the WHO Member States at the 67th World Health Assembly in 2014.4

Approximately 40 percent of people with PsA will go on to develop an inflammation of the spine, leading to neck and back pain as well as reduced mobility.5 PsA can also be expressed in a very severe form, known as Psoriatic Arthri-tis Mutilans, which can result in a widespread destruction of the joints and progress to a disabling and devastating condition of the hands known as “telescoping fingers”.6

Not only may PsA affect the hands, neck and lower back as well as major joints such as knees and shoulders, but most individuals with PsA also have to manage the itching, irritation, stinging and pain due to also having psoriasis, a serious, and chronic, noncommunicable disease. Psoriasis has been shown to have a very negative impact on quality of life as individuals may experience great physi cal discom­fort, disability, stigmatization and depression due to their

disease.7 People with PsA are just as dis­abled as people with rheumatoid arthritis, with allowances made for disease duration, age and gender.8

In addition to the PsA, many sufferers will have to face other serious medical problems, as over 50 percent of people with PsA develop more than one comorbid condition that can have a significant nega­tive impact on health and quality of life. Common comorbidities associated with PsA are cardiovascular disease, metabolic syndrome, obesity, diabetes, fatty liver di­sease, Crohn’s disease, ophthalmic disease, depression and anxiety.9

Because of the pain and stiffness PsA causes, basic daily activities such as ben­ding down to pick up clothing from the floor, dressing, walking outdoors on flat

ground, getting in and out of bed, washing and drying one’s body and lifting a full glass to the mouth can become very difficult or even impossible.10 The disease may also cause problems performing activities such as driving a car and participating in sports, in other words: being able to partici­pate fully in the community. Due to the physical limitations PsA entails, but also due to high medical costs and lost pro­ductivity, PsA can become a significant financial burden for individuals, who report high rates of difficulties with paid employment and expensive treatments.11

To prevent, or at least lessen, the disease’s impact on health and quality of life, it is imperative that people with PsA are diagnosed and treated as early after onset as possible.12

Studies indicate that as many as 50 percent13 of psoriasis patients have undiagnosed PsA and survey results have also shown that almost 60 percent14 of those who have been diagnosed with PsA are not being treated for their joint

A need for GLOBAL AWARENESS to lift the burden of psoriatic arthritis on the individual and society

1

disease. A lack of diagnosis and treatment can have tremen­dous negative effects, as studies show that as short a delay as six months from symptom onset to the first visit with a rheumatologist can result in irreversible joint damage and a poor prognosis.15

There is an urgent need for greater awareness and recognition of the burden of PsA on the individual, because the long­term outcomes can be severe, marked by disease progression, increasing disability, comorbidities, high costs and poor quality of life.16

The burden of psoriatic arthritis on society As shown, PsA can be disabling and may seriously impact the individual’s ability to work full time or even at all, put­ting an economic strain on society. The implications of this are important for policy makers and health care professio­nals to acknowledge, as many people with PsA are diagnosed in the middle of their working years, with an average age of diagnosis estimated at 41 to 44 years.17 Studies have shown that unemployment caused by PsA ranges from 22 – 23 percent,18 and a Norwegian study shows that up to a third of people with PsA between 18 to 45 years of age received disability pensions due to not being able to work full­time.19

To manage the burden of PsA on society, it must be acknowledged that both direct and indirect costs of PsA increase with worsening physical function and disease activity. For example, a US study shows that total annual direct costs, which include costs for visits to doctors, treat­ments and hospitalization, rise from $3,800 in patients with low scores in a Health Assessment Questionnaire (HAQ) to $9,350 in patients with high HAQ scores.

Indirect costs, which comprise productivity loss owing to sick leave days and early retirement, rise from $9,155 for patients with low HAQ scores to $61,220 for patients with high HAQ scores.20

To improve early diagnosis and reduce the undertreat­ment of PsA, it is vital that dermatologists and primary care physicans recognize PsA and its symptoms, as they are most likely to meet patients with PsA early in the course of the disease.21

Without recognition and awareness of PsA among policy makers, health care professionals and the public, the burden of PsA to individuals and societies will remain high, in terms of healthcare costs, lost productivity and inability to participate fully and equally in the community.

Call to actionThe International Federation of Psoriasis Associations (IFPA), a non­profit organization made up of psoriasis and psoriatic arthritis associations from around the world, urges the international community to:

• Recognize that psoriatic arthritis is a serious disabling disease with a major impact on the individual as well as on society

• Include psoriatic arthritis in health policies and disability forums

• Support awareness campaigns to educate patients and health care professionals about psoriatic arthritis to ensure early diagnosis and effective treatment

2

3

4

1 Chandran V, Raychaudhuri SP “Geoepidemiology and environmental factors of psoriasis and psoriatic arthritis”, J Autoimmun, 2010; 34, pp. 314–321 Reveille JD, “Epidemiology of Spondyloarthritis in North America”, J Am Med Sci, 2011; 341(4), pp. 284–286

2 Huynh D, Kavanaugh A, “Psoriatic arthritis: current therapy and future approaches”, Rheumatology, 2015, 54(1), pp. 20–28

3 Pariser DM et. al., “National Psoriasis Foundation Clinical Consensus on Disease Severity”, Arch Dermatol. 2007, 143, pp. 239–242

4 Psoriasis Resolution WHA67/VR/9.

5 Helliwell PS, Wright V, “Psoriatic arthritis: Clinical features.” In Klippel JH, Dieppe PA (eds.) Rheumatology. 2nd Edition. London: Mosby; 1998; p. 6.21.1­6..8

6 Bruzzese V, Marrese C, Ridola L, Zullo A, “Letter to the Editor: Psoriatic Arthritis Mutilans: Case Series and Literature Review”, J Rheumatol, 2013; 40(7), pp. 1233–1236

7 World Health Organization, “Psoriasis Report by the Secretariat”, 2013, EB133/5

8 Sokoll KB, Helliwell PS, “Comparison of disability and quality of life in rheumatoid and psoriatic arthritis”, J Rheumatol, 2001; 28(8): 1842–1846

9 Ogdie A, Schwartzman S, Husni ME, “Recognizing and managing comorbidities in psoriatic arthritis”, Curr Opin Rheumatol, 2015; 27, pp. 118–126

10 Lebwohl MG et. al., “Patient perspectives in the management of psoriasis: Results from the population­ based Multinational assessment of psoriasis and psoriatic arthritis survey”, J Am Acad Dermatol, 2014; 70, pp. 871–881

11 Taylor, WJ, “Impact of psoriatic arthritis on the patient: Through the lens of the WHO international classification of functioning, health and disability”, Curr Rheumatol Rep, 2012;14, pp. 369–374

12 Psoriasis Patient Advocacy Group Consensus Statement on Unmet Needs, “A global initiative to ensure people with psoriasis and psoriatic arthritis get the care and treatment they need to live full and healthy lives”, 2014, downloadable from www.ifpa­pso.org.

13 Helliwell P et. al., “Qualifying unmet needs and improving standards of care in psoriatic arthritis”, Arthritis Care & Research, 2014; 66:12, pp. 1759–1766

14 Lebwohl MG et. al., “Patient perspectives in the management of psoriasis: Results from the populationbased Multinational assessment of psoriasis and psoriatic arthritis survey”, J Am Acad Dermatol, 2014; 70, pp. 871–881

15 Haroon M et. al., “Diagnostic delay of more than 6 months contributes to poor radiographic and functional outcome in psoriatic arthritis”, Ann Rheum Dis, 2014, Epub. Ahead of print.

16 Helliwell P et. al., “Qualifying unmet needs and improving standards of care in psoriatic arthritis”, Arthritis Care & Research, 2014; 66:12, pp. 1759–1766

17 Osterhaus JT, Purcaru O, “Discriminant validity, responsiveness and reliability of the arthritis­specfic Work Productivity Survey assessing workplace and house hold productivity in patients with psoriatic arthritis”, Arthritis Research & Therapy, 2014, 16: R140

18 Tillet W, de­Vries C, McHugh NJ “Work disability in psoriatic arthritis: a systematic review”, Rheumatology, 2012;51, pp. 275–283

19 Taylor WJ, “Impact of psoriatic arthritis on the patient: Through the lens of the WHO international classification of functioning, health and disability”, Curr Rheumatol Rep, 2012;14, pp. 369–374

20 Lee S et. al., “The burden of psoriatic arthritis; A literature review from a global health systems perspective”, P&T, 2010; 35:12, p. 686

21 Gladman D, “Psoriatic arthritis”, Dermatologic Therapy, 2009;22, pp. 40–55

Photos1. Courtesy of Philip Helliwell, MD, Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds

2. Courtesy of Anne Stiernquist, Psoriasisförbundet

3. Courtesy of Sergio Toloza, MD, Ministry of Health in Catamarca, NW Argentina

4. Courtesy of Sergio Toloza, MD, Ministry of Health in Catamarca, NW Argentina

Sources

About IFPAIFPA unites non-profit psoriasis associations so that their global campaign

for improved medical care, greater public understanding and increased research will improve the lives of people who live with psoriasis and psoriatic arthritis.

For more information about IFPA and our activities, please visitwww.ifpa-pso.org and www.worldpsoriasisday.com.

IFPA gratefully acknowledges the kind assistance of Dr Philip Helliwell and Maarten de Wit in the production of this issue brief.