E- ISSN: 2709-5533
Vol 4 / Jan - Jun 
PANLAR 2023 COVERAGE
The 6th Pan American Congress of Patients with Rheumatic Diseases
Author: Estefanía Fajardo: Scientific journalist of Global Rheumatology by PANLAR, email@example.com
Cite as: Fajardo E. The 6th Pan American Congress of Patients with Rheumatic Diseases | Global Rheumatology Vol 4 / En - Jun . Available from: https://doi.org/10.46856/grp.233.e174
Published Date: 25/05/2023
Shared decision making, informed patients, updates on different diseases, and also consensus on biosimilars, among other topics, were addressed at the 6th Pan-American Congress of Patients with Rheumatic Diseases and as guests in a space within the PANLAR 2023 Congress for the development of the new strategic plan.
The patients’ day began with words of welcome by Miguel Albanese, president of PANLAR, who assured that this meeting “will allow us to share experiences, the wisdom of those who suffer, the experience of those who have read and thus harmonize everything”, and added that this will generate wealth in “knowledge, humanity and sensitivity”. For her part, Tini Jordan, on behalf of Asopan, described this space as “a meeting point where doctors and patients will be able to continue working to find the solutions that some corners of our continents need. We will meet 60 patient associations and many professionals who will continue to teach us”. Dr. Carlo Vinicio Caballero referred to the importance of joint work between doctors and patients, “and the ideas and the desire that patients have to learn and have direct information from us, the doctors”. He also pointed out that empowering, inspiring and supporting are actions developed through PANLAR, Asopan and the Juntos Group, mentioning the Global Health Living Foundation 2022 Beacon for Better Health award.
There were two plenary sessions, one on self-management and another on shared decision-making, in addition to four symposiums that addressed mental health issues, myths and realities of nutrition, and a discussion on how to care for organs beyond the joints, as well as a space for associations to present projects or ideas that will serve as a roadmap for decisions in the region.
Dr. Emilia Arrighi addressed the first plenary session on ‘Self-management of disease: PANLAR expert patient (EP) in rheumatic diseases’. She mentioned the journey from PANLAR hand in hand with patient associations through different meetings in different countries (three groups in Argentina, one in Colombia and two in Panama) to analyze 78 participants and perform an educational intervention. “The (EP) PANLAR program allowed patients with rheumatic diseases to take a more active role in the care of their health, self-management. We also measured physical activity and significantly increased the frequency of days per week they exercised, and also decreased the hours they sat down. The patients played a much more active role in their health care” she said. In terms of adherence to medications or participation in decision making, there was also evidence of improvement. “It is the first expert patient program in the region that has had a systematic measurement and has yielded statistical results that constitute evidence. In just six weeks, patients have made changes in their health” she concluded.
Emma Pinzón, patient leader, talked about what it means to be an expert patient. “It is synonymous with love for oneself and for others” and mentioned her extensive experience in managing her disease, in addition to handling terminology, as well as a willingness to listen to other patients, providing emotional support, and fundamentally knowledge of the healthcare system to “help improve the proper use of it.”
The next topic was pilot program experience in the Pan-American region. Gina Ochoa, leader in Colombia, spoke about what has been done in Colombia through a course for the Bolivarian region consisting of different sessions with the commitment and follow-up of each patient. Will, persistence, commitment and adoption were the key words. “When we talk about healthy habits, we not only refer to the physical part, but also to the emotional, social, as well as labor and economic. That is how this experience expanded our ranges of responsibility, adaptability, tranquility, commitment and a very special one which was fellowship.”
From the point of view of a rheumatologist, Leandro Ferreyra pointed out that “it is not enough to have experience in order to be an expert patient, you have to be motivated, train and study, know how to communicate and be able to intervene at all levels of medicine”, and added that “there are many patients with experience, but at the Latin American level we lack expert patients and this place gives us the space to create a very important context on the subject”.
During the first symposium ‘How to be an independent patient: How to manage taking medications and their side effects’ Dr. Carlos Toro highlighted, among others, the effects of the groups of medications most used by patients and the joint work between doctor and patient for knowledge. He emphasized the importance of knowing that “drugs are safe and have been approved after a rigorous research and development process. However, the possibility of adverse effects exists, which is why risk management is important”. He also said that adherence to treatment and medical recommendations reduces the occurrence of side effects and emphasized the avoidance of self-formulation, even of natural products. “A shared decision-making helps reduce the occurrence of side effects and strengthens the doctor-patient relationship,” he concluded.
The next approach was ‘How to manage changes by new treatments. Biologics and biosimilars’ by Dr. Miguel Albanese. He pointed out that there must be a constant dialogue and, by way of conclusion, emphasized that biosimilars “are a reality” and that “they must undergo a rigorous study that demonstrates efficacy, safety and bioequivalence, so they must be clinically as effective as the original”. Along with this, they must cost less than the bio-originals and an important point is that the education of doctors and patients is the key to change, considering that “many times patients or doctors do not want to change and both shall participate in choosing biosimilars”. In conclusion, Dr. Albanese acknowledged that medicine has changed, “today we need a society that empowers itself and negotiates its health decisions” and praised the work on shared decisions worked on and promoted by PANLAR.
Further, Fernando Rodriguez spoke on ‘How to perform auto clinimetry’. In his intervention he said that “high quality clinical care requires patients to provide information on how they feel, their symptoms and the effects of the prescribed treatment”. Providing the tools and knowledge to the patient by the healthcare professional improves communication between the two, as well as providing an advantage for the patient, “objective measurement similar to that performed by the medical team, also improves consultation times and helps in shared medical decision making”.
Different views on shared decisions
The second plenary, ‘Shared decision making’, initially featured Dr. Virginia Pascual with a bioethical perspective. She mentioned “respect for patients as unique and autonomous persons”, as well as the principle of autonomy that can, in addition, adapt and change throughout a patient’s journey: “In our day-to-day life, it is important to promote dialogue around how each patient wishes to make decisions related to their health. I also consider it important to promote more active and responsible participation in decision making in the rheumatic disease patient community.”
Dr. Ana Paula León presented the preliminary results of the Shared Decision-Making Survey conducted among patients in the Pan-American region, which generated from a study of 1116 patients diagnosed with rheumatic disease, explaining that decision-making is a tool that improves knowledge under the principles of patient-centered medicine. Among these is that “patients who have lived with the disease for more than 10 years have a greater perception of shared decision making compared to those who have not”, also considering a greater clinical experience. Finally, the findings also established that there is a difference according to age.
Nutrition in patients with RD
In the second symposium ‘Is there an anti-inflammatory diet in RD’, Dr. Monica Guma presented the ‘Impact of diet in rheumatoid arthritis: biological justification and evidence to date’. “Diet alone is not going to cure the disease, nor is it going to control symptoms in most patients, so we do not recommend making drastic changes in medication; it is a complementary treatment,” she said. In her presentation, she argued that there is a biological justification for using diet as a complementary therapy, as well as an improvement in clinical outcomes in those who had the ITIS diet (evidence-based and adjusted from the Mediterranean diet), and a difference between the patients analyzed who followed and those who did not follow the nutrition and dietary indications. Alejandra Nudel, nutritionist, in ‘How to make a menu with everyday foods’, mentioned how “there are anti-inflammatory foods, easy to obtain, easy to cook”. Moreover, she recommended reviewing the ingredients, “preferring minimally processed foods, especially of vegetable origin”, as well as having fresh vegetables and fruits (acidic or citric) available, and “using small amounts of oils, fats, salt and sugar to season and cook food”. Veronica Molinar arrived with chef’s tips providing advice on foods that can be easily found.
Mental health in patients
The third symposium, ‘Mental Health in RD - Children and Adults’, began with Dr. Alberto Palacio Boix and the ‘Impact of mental health in ET, in pandemic and post pandemic’. “The covid-19 pandemic is an unusual event in the history of the world”, Dr. Palacio-Boix affirmed, and he argued that “we had never seen a virus penetrate beyond any border and social level, we had never faced the insecurity of dying prey to a virus even if we were healthy”. He referred to the psychological impact because “it made us think how vulnerable we are in the face of nature”. In reference to the isolation, “everything had a huge psychological and emotional impact on human beings” leading many patients to situations of anxiety and despair. “Isolation was a situation that distanced us all from reality, communicating through screens without being able to have close contact with others,” he said. Another aspect mentioned was hypochondria, “the perception of some people, especially the most psychologically vulnerable, that they had of getting sick or dying”, notably at the beginning of the pandemic, around the year 2020.
Responding to the question ‘How does anxiety and depression affect children with RD?’, Dr. Clara Malagón referred not only to the patient, but also to the impact on the family of the disease, as well as the variation in how the patient conceives their disease according to age, “and this will also have an impact on their mental health”. As for the stress of rheumatic disease, “it is not the cause, but it can modulate the intensity of rheumatic symptoms,” she said, as well as being able to promote reactivations of the disease and interfere with quality of life, so “learning to manage stress is crucial to promote symptom control”. Finally, she provided recommendations, as well as possible symptoms and signs to which attention should be given in the care and family nucleus.
Regarding ‘Cognitive disorders and sleep disturbances’, Dr. Carlos Ríos pointed out that it is also part of “other comorbidities of rheumatoid arthritis that are not usually assessed and that beg the question: what are we forgetting? (…) We commonly observe psychological or cognitive comorbidities such as sleep disorders, cognitive impairment, anxiety, depression, loss of self-esteem, hopelessness and suicidal ideation that affect patients’ quality of life and that are not usually assessed.” He pointed out that “the prevalence of depression is higher in patients with RA than in the general population, it is the major comorbidity of this disease”, and is associated with greater disease activity, disability, increased morbimortality, loss of social and recreational activities, lower adherence to treatment, sleep problems, greater risk of suicide and lower probability of achieving complete remission of symptoms.
Dr. Daniel Hernandez spoke about ‘Self-management for living with good mental health’. He referred to the importance of mental health, and called it a point that “we should be concerned about,” focusing on teenagers. “Stress can contribute to the development of rheumatic diseases such as arthritis and lupus, it is not going to cause them, but it will generate outbreaks or trigger the disease that was hidden in our body.” As for self-management techniques, he mentioned regular exercise, healthy eating, sleep hygiene, social support. Among others, adherence to treatments is fundamental for the processes, as well as seeking professional help if required.
In the fourth symposium ‘What organs should we take care of beyond the joints?’, Dr. Enrique Loayza spoke about skin care in RD, and referred to SLE and the skin, also addressing aspects such as skin cancer and the treatment proposed by dermatologists for lupus. “Not only to improve the visible with respect to the skin disease, not only to prevent the development of other manifestations, but to improve the quality of life of our patients,” he detailed.
The next topic was ‘How to treat the intestinal microbiota?’, by Dr. César Matos, ranging from different diets to recommendations on the preparation and consumption of food, “I recommend avoiding the Western diet, ensuring the balance of omega-3 and 6, analyzing the ways of cooking and eating food in its original form, and only supplementing patients when they have a deficit”. How to detect cardiovascular risk, the analysis and response to this concern was analyzed by Dr. Antonio Cachafeiro. “There are classic risks of cardiovascular diseases, independent of those who have rheumatic diseases”, and he mentioned aspects such as age, sex, genotype, in terms of non-modifiable factors. In modifiable factors, stress, diet, smoking or sedentary lifestyle, as well as associated diseases such as diabetes, obesity, hypertension and dyslipidemia. In patients with RD “apart from the factors mentioned above, there may be one factor inherent to the disease itself, which can cause damage or lesions to our cardiovascular system”. Recommendations included disease control, risk factors, treatment of specific diseases, monitoring of medications and regular check-ups.
Dr. Andrea Vergara presented ‘Is it important to consult the dentist?’. “A patient’s health should be considered as a system with connections that can originate in the oral cavity and have long-distance effects on the whole body,” she said. Therefore, “Dentists are a key part of multidisciplinary teams,” he argued. Finally, Dr. Yurilis Fuentes, Dr. Luis Lira and Dr. Dora Pereira summarized what had been presented at the congress, and there was a closing speech by Dr. Miguel Albanese and Dr. Carlo Vinicio Caballero.
You can consult all the topics discussed at the 6th Pan-American Congress of Patients with Rheumatic Diseases here: www.pacientespanlar.org/