Pan-American Manifesto for Rheumatic Diseases: The patients’ view
- Carlo VCaballero Uribe MD
- PriscilaTorres
https://doi.org/10.46856/grp.10.e109
Cite as:
León Aguila AP, Arrighi E, Caballero-Uribe CV, Soriano ER, Torres P, Pereira D. Manifiesto Panamericano sobre las Enfermedades Reumáticas: La perspectiva de los pacientes [Internet]. Global Rheumatology. Vol 3 / Ene - Jun [2022]. Available from: https://doi.org/10.46856/grp.10.e109
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Pan-American Manifesto for Rheumatic Diseases: The patients’ view
Abstract
Rheumatic and musculoskeletal diseases (RMDs for its acronym in English), are chronic pathologies of high morbidity with a great impact in quality of life, which generate disability and increase the costs of care. In Latin America there are multiple barriers to patient care.
The objective of the study was to identify the care needs and difficulties that patients with RMDs face in the region.
Methods: The information gathering technique was the so-called citizen jury, which involved the participation of 30 leaders of patient organizations in 13 countries evaluating the needs and preferences of patients with RMDs, as well as experts in the scientific area. The analysis process followed three phases: coding, description, and identification.
Results: The jury determined 12 recommendations that were categorized into different groups: prevention, detection, timely diagnosis, and comprehensive care by a multidisciplinary team in specialized centers, the role of patient organizations and their participation in health policies.
Conclusions: Pan American RMDs patient´s organizations, are aware of the urgent needs of the people they represent. Their contribution is essential to design strategies to improve the detection, access and monitoring of a better quality of life. The Pan American manifesto of RMDs constitutes a call to action to include the perspective of patients in the design of public policies.
According to the World Health Organization (WHO), rheumatic and musculoskeletal diseases (RMDs) can affect up to 15% of the global population (1). RMDs are a frequent cause of disability, reduced quality of life, and represent one of the leading global health burdens (2–4).
There are several barriers present in the Latin American region: late detection of these diseases, difficulties in access to healthcare and education, a shortage of rheumatology specialists, lack of access to timely treatments, and the socioeconomic, labor, and financial impact of the disease (5–7).
In developed countries, the cost of these diseases may represent between 1% and 3% of the gross domestic product, making them a significant public health concern (4).
Given the rising healthcare costs associated with RMDs, existing evidence confirms that patients who receive self-care education show improved treatment adherence, better pain control, feel more empowered during medical visits, and help reduce overall healthcare system expenditures (8–11).
In recent years, the role of patients and their relationship with healthcare professionals has evolved from a paternalistic model to a more active and participatory approach. Patients are taking greater responsibility for managing their disease and are participating more consciously in decisions that affect their health (11–13).
This PANLAR (Pan American League of Associations for Rheumatology) initiative builds on prior actions led by global health policy organizations, including the 2000 European Manifesto on Rheumatic Diseases presented by the European League Against Rheumatism (EULAR). That event set a precedent for including patient groups in the field of arthritis care and advocacy (14).
Another key milestone in promoting more active patient involvement was the consensus reached by 18 representatives from Latin America and the Caribbean, whose goals focused on identifying issues and offering recommendations for the care of patients with RMDs, with an emphasis on education and treatment.
These same themes were later revisited in 2018 during the First PANLAR Patient Congress, which brought together physicians, healthcare professionals, and patients to discuss the above challenges within the framework of the WHO’s Decade of Healthy Ageing 2020–2030 (14–16).
2.1 Participants
An adaptation of the citizen jury technique was used. A patient jury is a formal and structured method based on the citizen jury methodology. The use of such qualitative research techniques allows for understanding patients’ and citizens’ perspectives regarding health and healthcare (17).
The following inclusion criteria were considered for participant recruitment:
Leaders of patient organizations with knowledge of the needs of people with RMDs (Rheumatic and Musculoskeletal Diseases) in their country or region.
Representation of various RMDs.
Geographic representation: national representatives of patient organizations from different countries in the region.
A total of 30 leaders from patient organizations across 13 countries in the region were recruited, representing various rheumatic diseases (Table 1). Recruitment was carried out in collaboration with the Pan-American Network of Rheumatic Disease Patient Associations (ASOPAN).
2.2 Instrument
The method used for data collection was the citizen jury technique.
Although not the standard multi-day format, this methodology was conducted over one day, which is considered acceptable provided there is sufficient time for discussion and deliberation, along with the participation of jurors knowledgeable about the subject matter (17–18).
The development of this type of study through the formation of a citizen jury—or, in this case, a patient jury—represents a unique opportunity to ensure patient participation in the design of recommendations and the establishment of priorities to be considered in health policy (11,13,19).
2.3 Procedure
The meeting was held in the Republic of Ecuador on April 27, 2019, during the 3rd PANLAR Patient Congress. The leaders identified during recruitment received a prior invitation to participate. They were informed of the study objectives, the structure of the day, and their expected role as members of the citizen jury (Figure 1).
Thirty leaders from patient organizations representing 13 countries in the region and various RMDs participated. First, the experts or “witnesses” presented evidence covering the following topics (20):
Current status of RMDs in the region.
Barriers and challenges in the detection and treatment of RMDs.
Centers of excellence.
Patient education and empowerment.
Patient advocacy: the role and importance of patient involvement in identifying priorities and providing recommendations in health policy.
After the presentations, jury members had the opportunity to ask questions and provide comments (21).
Before starting the session, the study objectives were reiterated. Participants were informed that the session would be audio-recorded and that the confidentiality of collected data would be maintained. Each participant signed an informed consent form.
At the end of this phase, jury members gathered privately for two hours to deliberate. The goal of the discussion was to identify barriers and action areas needed to improve the care of people living with RMDs. The discussion was led by a moderator experienced in these techniques and was audio-recorded. Additionally, two observers were asked to take notes of the interventions.
The deliberation followed a semi-structured guide developed from a scientific literature review. This served both as a guide to address the different topics and as the main requirement to facilitate the exchange of opinions among participants.
2.4 Data Analysis
Both the audio recordings and notes were transcribed to ensure that all information discussed and deliberated by jury members was captured in detail. The jury reached a verdict in the form of 12 recommendations to improve care for people living with RMDs in the region.
Content analysis techniques were used to analyze the information. The analysis process followed three phases: coding, description and identification of main themes, and finally the relationship among those themes. Coding was carried out independently by two researchers. Validation was conducted through participant feedback, information triangulation, and expert review (22–23).
During the deliberation, the jury members were able to discuss the most relevant topics based on a semi-structured script that identified the thematic areas to be explored. The starting point was the evidence provided by specialists, which was then used to identify not only clinical and healthcare needs but also the emotional, family, social, and occupational needs of affected individuals and their families.
The jury's final statement, containing the verdict, was agreed upon by the various leaders and outlines the needs and recommendations to improve the detection and care of rheumatic and musculoskeletal diseases (RMDs) in the region (Table 2).
Following a qualitative analysis of the information, the main results were categorized into the following groups:
3.1 Prevention, Early Detection, and Timely Diagnosis
One of the main needs was to provide more information to the general population about the symptoms of RMDs. The lack of early diagnosis remains a major concern, directly impacting the prognosis and treatment of these diseases. The delays in diagnosis, which in many cases may take months or years depending on the patient’s place of residence and access to education or specialist consultation, were also highlighted. Therefore, the jury emphasized the importance of systematically reinforcing social awareness campaigns aimed at the general public.
"Information and education for the population about the signs and symptoms of rheumatic diseases."
Jury members agreed that in some countries, there are an insufficient number of rheumatology specialists, and access becomes even more difficult for patients living in rural areas. They recommend greater training in this specialty for health sciences students, as well as specific training for primary care physicians.
"Promote the study of rheumatic diseases in medical school and strengthen the subject where it already exists."
"Training on rheumatic diseases for students, health professionals, and primary care teams."
This situation is even more complex in children, in whom these diseases are less prevalent and thus harder to identify. Therefore, timely referral to a specialist is essential, as it directly impacts the quality of life and potential disability of the patient, according to the jury.
"Not all pediatricians are prepared to diagnose rheumatic diseases in children."
"A health system that ensures early detection and timely referral to a specialist for rheumatic diseases."
3.2 Comprehensive Care by a Multidisciplinary Team in Specialized Centers
A comprehensive approach to patients with RMDs and their families is crucial when measuring the impact on quality of life. Patient-centered care includes: the best therapeutic options for each case and psychological, emotional, social, and occupational support if necessary. For this reason, jury members call for the creation of specialized care centers.
It is also essential that patients practice good self-care and take an active role in managing their disease, as well as being able to continue their work or academic life.
"Ensure the conditions for people to continue functioning within their environment and remain productive in the workplace."
"Recognition of disability is important."
Comprehensive care must also include, according to the jury, timely access to palliative care and pain management.
3.3 The Role of Patient Organizations and Civil Society
The jury emphasized the importance of greater recognition of the role of patient organizations—not only in raising public awareness, providing psychological and legal support services, but also in educating patients. Making their work visible is both an act of justice and a strategy to increase therapeutic opportunities for affected individuals and improve coordination between care centers, specialists, government policies, and available resources.
"The health system should recognize the work of organizations in educating patients and caregivers on self-care and activate joint collaboration mechanisms."
Another area of work for patient organizations is the protection of labor rights. The reintegration of people with RMDs into the workforce must be addressed in a multidisciplinary context, ensuring the patient can resume work activities with directed support to reduce the disease’s economic and social impact.
"Many employees are not promoted simply because they have the disease."
"Request that governments develop policies aimed at preserving employment or reintegrating individuals in cases of disability due to rheumatic diseases."
Children with early-onset RMDs not only face challenges in the diagnosis of their condition but also barriers to accessing specialized care and education adapted to their needs. Patient organizations also work on raising awareness among the child’s environment, including classmates, to prevent discrimination and isolation.
"Today, the health world acknowledges the importance of parental support in managing chronic diseases like ours."
In this context, recognizing the educational and empowerment role of patients is another area where, according to the jury, patient organizations are ready to take the lead.
3.4 Patient Participation in Health Policy
Another priority identified by the jury is the inclusion of patients in decision-making processes related to public policies. There is currently an international trend toward incorporating patients’ perspectives and priorities in decisions that will affect how diseases are addressed.
"Train rheumatic disease patient organizations in public policy decision-making and mechanisms for citizen participation."
Among the areas of participation, input on the incorporation of health technologies is also of great interest. While the jury recognizes the financial challenges faced by the health systems of various countries, they deem it necessary to ensure access to innovation and better quality of life conditions.
To ensure good governance of the health system, patient organization leaders have identified the alliance among various stakeholders as key. Decision-making bodies should include health authorities, government representatives, academia, and scientific societies to coordinate and optimize available resources.
"Promote partnerships and strategies between public health systems and patient organizations focused on both education and outreach, as well as strengthening the empowerment of people with rheumatic diseases."
The Pan-American Manifesto on Rheumatic Diseases was developed, endorsed, and supported by more than thirty patient organizations representing various RMDs from different countries in the region.
The objective of this study was to identify the needs and barriers faced by patients living with RMDs in the Pan-American region, from the perspective of the leaders who represent them. The main conclusions were formulated as recommendations: prevention, early detection and diagnosis; referral to specialists and an increased number of available professionals; access to comprehensive care; recognition of the role of patient organizations and their involvement in the design of public policies. The study indicates that patients consider it essential to have the active participation of leaders representing patient needs to formulate improvement recommendations regarding the detection, diagnosis, and follow-up of individuals living with RMDs, to ensure optimal quality of life and reduce the potential associated disability.
In Europe, there are institutional mechanisms that guarantee citizen participation in health-related decision-making, while in the Pan-American region, these opportunities are sporadic and poorly structured. It is essential to acknowledge that the patient perspective is irreplaceable in various areas of health (24–28). In this regard, and in alignment with European organizations and their approaches, this is the first Pan-American Manifesto, which constitutes a call to action for eleven countries in the region (29).
The initiative led by PANLAR and ASOPAN is concrete evidence that scientific societies and patient organizations can identify areas for collaboration and joint work to promote advocacy efforts and public policy design. These actions represent good governance and sustainability practices in healthcare in developed countries (30–31).
Although this is a qualitative study based on the citizen jury technique and, therefore, the results cannot be extrapolated to all patients living in the region, it represents a starting point for further exploration in the prioritization of needs and the patient perspective as a source of innovation in health policy (11, 32–33).
Patient organizations for RMDs in the Pan-American region are well aware of the urgent needs of the people they represent, and as experts, their contributions are essential when designing strategies to improve access and follow-up care for individuals living with RMDs in pursuit of a better quality of life.
The Pan-American Manifesto is a call to action to include the patient perspective in the design of public health policies.
Dr. Carlo V. Caballero-Uribe, MD, MSc, PhD, declares that he is the Editor-in-Chief of the journal Global Rheumatology. The remaining authors declare no conflicts of interest.
This manifesto was made possible through funding from the Pan-American League of Associations for Rheumatology (PANLAR).
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