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The needs of patients with psoriatic arthritis and psoriasis in the Pan-American region

By : Estefanía Fajardo
Periodista científica de Global Rheumatology by PANLAR.



19 November, 2021

https://doi.org/10.46856/grp.30.et102

"PANLAR collected feedback and recommendations from patients and expert rheumatologists on the unmet needs of those diagnosed with psoriatic disease and set them down in a position paper."

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This is an open-access article distributed by the terms of the Creative Common Attribution License (CC-BY NC-4). The use, distribution or reproduction in other forms is permitted, provided the original author(a) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with this terms.

Psoriasis is a chronic, noncontagious, painful disease, for which there is no cure at present and can affect the physical appearance of the patient and negatively impact their quality of life. (1)

In addition to the skin, psoriasis can be associated with an inflammatory arthritis known as psoriatic arthritis (PsA), which involves the joints of the spine and other joins. It is estimated that about 30 to 40% of patients will develop it at some point in their lives. (2)

In Latin America, psoriasis and its comorbidities has been a growing challenge of public health. This is in part due to the large inequalities in the distribution of health commodities, medical care and the approach of governments that seeks to prioritize the distribution of resources for the control of acute diseases giving second place to the care of chronic diseases such as the psoriatic disease. (3)

For several years, the psoriatic disease has been separated from other rheumatic diseases as a distinct disease entity, with its own features, demography, and evolution.

The disease may occur at any age, but usually occurs in people between ages 40 – 59, with a prevalence between countries of 0,09% to 11,4% making this a serious public-health problem worldwide. (4)

It has also been proved that both psoriasis and psoriatic arthritis have a significant effect on a decent quality of life. In recent years research on psoriatic arthritis has grown enormously and has allowed the incorporation of strategies and medications that are changing the prospects of the patient community. However, there are still many limitations in knowledge, access to treatment, and in therapeutics, which reveal the unmet needs of our patients.

 

PANLARs POSITION

It is well known that health authorities need data for making the best decisions. That is why PANLAR, over the course of several months developed a position paper: The needs of the patients with psoriatic arthritis and psoriasis in the region, 2021

Just as the Pan-American Manifesto on rheumatic diseases was presented on the 2nd Pan-American Congress of Patients with Rheumatic Diseases, this document of recommendations is now being presented. (5)

It is therefore important to set up the structures for effective dialogue between the various stakeholders including scientific societies, patient organizations, professional associations, researchers, and scholars to develop health strategies that responds best to the needs of the patients.

In this document, PANLAR has sought to collect feedback and recommendations from patients living with the disease and expert rheumatologists on the unmet needs of patients with psoriatic arthritis.

In this regard, the intention of PANLAR after months of research and fieldwork, is to draw the attention of health policy makers, medical societies, doctors, patient associations, patients and, in short, society as a whole, to these needs and the urgency of addressing them.

 

NUMBERS

The document presents the natural history of the disease as well. It outlines that people with psoriatic disease can go through periods of severe pain, fatigue, itching, generalized or segmental erythema with or without flaking, bleeding in large areas of the skin and involvement of the joints. Recent studies suggest that patients suffering from psoriasis are at higher risk of developing comorbidities such as cardiovascular disease, which magnifies the critical need of timely access to options of effective treatments. (6)

Additionally, it states that patients with psoriasis are 39% more likely to be diagnosed with depression that those who do not have the disease, while the risk of a diagnosis of anxiety is 31% higher. (8)

Up to 84% of patients with PsA, present skin manifestations before the first clear clinical symptom of joint damage, which explains why the dermatologists are often the first specialists to face the challenge of establishing an early diagnosis of PsA. Although they are familiar with the skin manifestations of psoriasis, they may be less experienced with associated musculoskeletal manifestations and most do not screen for PsA in the usual clinical practice, implying a potential diagnostic delay. The estimated prevalence of undiagnosed PsA among patients with psoriasis being treated by a dermatologist range from 15-30%. (9, 10)

In that context, the document also points out that late diagnosis results in further functional impairment and bone erosion causing delay in treatment which can negatively impact the mental health of the patient due to increased functional limitations and decreased quality of life. (7)

Early diagnosis and treatment of PsA prevents the disease from progression and irreversible joint damage or possible disability. Thus, an interdisciplinary approach including dermatologists to reduce the number of undiagnosed patients is essential. (7)

Timely referral to a specialist, explains the document, will allow an early approach and control of the pathology, the prescription of the appropriate therapeutic treatment and the guidance and proper follow-up of the treating doctor, thus guaranteeing the best available options.

 

DEVELOPMENT OF THE STUDY

The development of the study took approximately eight months. It started in February with the preparation of the structure and the intended scope of the position paper. In order to achieve the objectives pursued, a qualitative methodology including the organization of focus group with recognized experts was applied. 

First of all, a committee of experts was formed comprised of medical specialists on psoriatic arthritis representatives of PANLAR and patient organizations leaders from Argentina, Brazil, Colombia, Costa Rica, Chile, Ecuador, the Unite States, Mexico, Panama, Dominican Republic, and Uruguay.

Subsequently, the participants were distributed in the groups so that there was a balance between professionals and patient leaders and that all the participating countries were represented in both groups.

The development of the study was structured according to the following phases:

 

 

 I.        Review of scientific literature

II.        Fieldwork

The members of the committee of experts received an invitation to participate, where they were informed the objectives of the study, as well as the flow of the fieldwork and their roles.

Two virtual focus groups were organized on July 2 and 3, 2021. Each group was attended by 12 experts and lasted approximately two hours. The sessions were moderate by an expert researcher in these techniques, and one professional was available to take notes.

Through a coding process, the key messages corresponding to different areas previously identified were detected and that information was used for a content analysis.

III. Processing the results: Each group prepared a list of recommendations that were summarized in 10 final points “Decalogue of recommendations”. Experts from both groups, reviewed them, made comments, and reached consensus on the final recommendations which are detailed in the final report of the position paper. 

 

DECALOGUE

Thanks to the methodology of the study and the focus groups, 10 final recommendations were defined, which are listed in Table 1 along with a brief description of each one.

The recommendations refer to four key areas for action: access to early diagnosis and treatment; patient organizations and communities; scientific societies; and health policies.

 

TABLE 1. DECALOGUE OF RECOMMENDATIONS – BRIEF DESCRIPTION

Access to timely diagnosis and treatment

  1. Transdisciplinary and efficient patient care, based on clinical practice guidelines, considering associated comorbidities
  1. Access to efficient diagnostic and telemedicine tools and instruments.
  1. Integral Psychological Support and early detection of mental illness or suicidal risk.

Patient organizations and communities

  1. Application of innovative methods for the education of patients, family members caregivers, and civil society organizations, supporting the creation of schools of expert patients  
  1. Close cooperation between scientific societies and patient organizations for the design advocacy actions and reduce the social stigma.

Scientific societies

  1. Continuous and updated education for primary health care professionals and other specialties related to the care of patients with PsA
  1. Design of strategies for efficient access to rheumatologists and increase in the health labor force.
  1. Promoting epidemiological, economic, and social studies for producing reliable data on the burden of the disease

Health policies

  1. Access to continuous and quality treatments that cover the different approaches and action mechanisms
  1. Adequate of pharmacovigilance and quality controls by the health authorities to prevent counterfeit medicines and the development of pharmacological studies that do not meet quality standards.

 

Pursuant to the above, countries in the region have been better preparing themselves to involve the different responsible agents in the dialogue and decision-making tables. This is a process of democratization of health.

Governments across the world are already including, in addition to scientific referents and pathology specialists, representatives of patient organizations, who bring a unique and irreplaceable position. They translate the needs and preferences of patients and provide first-hand insight into the barriers to quality care that patients face on a daily basis in their own countries.

Additionally, a series of activities are planned for the promotion of this document, which will be coordinated both at regional and local level according to the situation in each country.

The activities are designed to share the results of the document at a social level, to the organizations and participant societies and, through encounters with health authorities, to generate substantial improvements in the existent strategies for approaching such a complex pathology as psoriatic disease. This document has the mission of strengthening advocacy strategies in the region.

*This article was written with the contributions of Drs. Enrique R. Soriano, Carlo V. Caballero, Emilia Arrighi and Ana Paula León, who participated in the building process of the document presented herein.

 

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REFERENCES

  1. Kavanaugh, A., Helliwell, P., & Ritchlin, C. T. (2016). Psoriatic arthritis and burden of disease: patient perspectives from the population-based multinational assessment of psoriasis and psoriatic arthritis (MAPP) survey. Rheumatology and therapy, 3(1), 91-102.
  2. Smolen, J. S., Breedveld, F. C., Burmester, G. R., Bykerk, V., Dougados, M., Emery, P., ... & Van Der Heijde, D. (2016). Treating rheumatoid arthritis to target: 2014 update of the recommendations of an international task force. Annals of the rheumatic diseases, 75(1), 3-15
  3. Toloza. Sergio M.A, Valle-Oñate y Espinoza Luis R. Psoriatic Arthritis in South and Central America. Current Rheumatol Rep (2011), 13:360-368.
  4. World Health Organization. Global reports on Psoriasis. [online]. Geneva: WHO; 2016 [accesed 2 Jun 2021]. Available at: https://apps.who.int/iris/handle/10665/204417
  5. PANLAR. Pan American Manifesto on Rheumatic Needs [online]. Barranquilla, Colombia: PANLAR; 2018. [accessed on June 10, 2021]. Available at: https://globalrheumpanlar.org/sites/default/files/inlinefiles/Manifiesto%20Panamericano%20sobre%20las%20Enfermedades%20Reuma%CC%81ticas.pdf
  6. National Psoriasis Foundation. [online]. EEUU: National Psoriasis Foundation; 1996- 2021. Position statement on access to care. [accessed on June 2, 2021]. Available at: https://www.psoriasis.org/access-to-carestatement/#:~:text=The%20Access%20to%20Care%20Statement,on%20the%20psoriatic%20disease%20community
  7. Husni ME, Merola JF, Davin S. The psychosocial burden of psoriatic arthritis. Semin ArthritisRheum. 2017;47(3):351-360
  8. Jadon DR, Stober C, Pennington SR, FitzGerald O. Applying precision medicine to unmet clinical needs in psoriatic disease. Nat Rev Rheumatol [online]. 2020 Nov [accessed 2 Jun 2021]; 16(11):609-627. doi: 10.1038/s41584-020-00507-
  9. Haroom M, Kirby B, FitzGerald O. High prevalence of psoriatic arthritis in patients with severe psoriasis with suboptimal performance of screening questionnaires. Ann Rheum Dis [online]. 2013 [accessed on June 5, 2021]; 72(5): 736–740. doi: 10.1136/annrheumdis-2012-201706
  10. Ranza R, Carneiro S, Qureshi AA, Martins G, Rodrigues JJ, Romiti R, et al. Prevalence of psoriatic arthritis in a large cohort of Brazilian patients with psoriasis. J Rheumatol. [online]. 2015 May [accessed on June 5, 2021];42(5):829-34. doi: 10.3899/jrheum.140474
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