Healing but also caring, recovering the basic spirit of medicine. Reconcile clinical effectiveness based on scientific evidence with a greater humanization of care. That is one of the coinciding reflections that doctors, patient associations and teachers pour into the manual Understand psoriasis from the effective affective model (edited by Healthy Numbers), presented this week in Madrid.
The book advocates more affective healing, a concept that is illustrated by these examples:
–Caring for the chronic patient means understanding him and making decisions in a shared way, be it a change in the way of approaching it or referral to a specialist for the new diseases that have caused the one he already suffers.
–Caring for the patient involves asking how they are before examining the evolution of their ailment.
– Dedicate quality time to that consultation that occurs once every three months. Individualize the treatment with each patient because each patient is unique.
–When it comes to complex diseases such as psoriasis, caring consists of attending to the physical manifestations in the form of plaques and peeling of the skin and knowing the psychological effect that these injuries cause.
–Find out if you smoke more or eat worse due to anxiety caused by injuries. Either you sleep badly or you don’t want to go outside.
–Know the impact it causes on your personal and work relationships.
José Luis López Estebaranz, head of the Dermatology Service of the Alcorcón Foundation University Hospital (Madrid), affirms that the paternalistic medicine model has gone down in history: “It is about collaborating with the patient and sharing how they want to be managed, with the media and with the existing scientific evidence ”. López Estebaranz, professor at the Rey Juan Carlos University, synthesizes the book in a very pertinent phrase when dealing with psoriasis: “Putting oneself in the patient’s skin.” From that particular patient. Because the injuries may be the same, but a teenager who debuts is not treated the same as a 70-year-old person who has been with the disease for half his life. And because this capricious disease that manifests itself in outbreaks undergoes a different evolution in each patient to the point that it causes secondary diseases known as comorbidities. The chances of suffering from cardiovascular disease, diabetes or being overweight increase.
It is about collaborating with the patient and sharing how they want to be managed, with the media and with the existing scientific evidence
Jose Luis Lopez
According to the dermatologist, the possibility that psoriasis patients suffer a myocardial infarction increases by 50%. “That is why it is so necessary that these patients be treated in a comprehensive way,” says López Estebaranz. The hospital where he works has a special unit made up of dermatologists but also rheumatologists and nurses. Others in other centers employ psychologists to treat mental repercussions. To ultimately try to cure an incurable disease. To care for the patient. A million in Spain, according to the association Action Psoriasis, which represents 2.3% of the population.
Trust between the patient and the doctor
Like Montse Ginés, who has had psoriasis and psoriatic arthritis for 13 years. 31% of patients with the first disease develop the second, according to the NEXT Psoriasis survey prepared by Acción Psoriasis. Ginés, who is vice president of this association, describes the doctor-patient relationship she maintains with her rheumatologist: “He is a very important person in my life.” And he continues: “There was a time when my rheumatologist got sick and doubted if I was going to be able to shoot with the disease.” Every time he has changed treatment, he has agreed with her. Within the effective affective model, Ginés defends that the patient always keep the same doctor unless he requests a change, which is his right. “It is hard to explain the whole process that you have lived to a new person. Confidence is difficult to achieve. It is not pleasant to tell all the time what happens to different people ”, explains this 59-year-old from Barcelona.
Specialized units such as the one at the Alcorcón hospital coordinate several specialists so that the patient does not tell his case over and over again. The information is handled jointly, which sometimes reduces the number of visits to the practice. “We optimize times. We improve the patient’s journey through the disease, ”says the head of Dermatology.
Both López Estebaranz and Ginés participated in the presentation of the book Understanding psoriasis from the effective affective model last Monday in Madrid. The round table that was formed with them and other specialists was joined by Santiago Alfonso, the managing director of the Acción Psoriasis association. Alfonso encourages patients to demand the best of treatment and care. And it encourages them, like Ginés and all the experts consulted, to be trained and informed. To let them know everything that happens to them. Ginés is also in favor of the patients’ relatives having more knowledge of the disease.
A book for everyone
The book presents a way to understand and treat this immune-mediated inflammatory disease and is aimed at doctors, teachers, patients, relatives and friends of patients, everyone. It serves to continue making this disease known, so that even those patients who once decided to stop being treated come back to the consultation. “The disease is not cured, but we managed to ensure that many patients lead a 100% normal life,” says López Estebaranz. “We no longer prescribe resignation,” says Alfonso to influence the progress that has been made in the way it is approached and the best care that patients therefore receive. “That they don’t stay home and go to the doctor. It is a disease that limits social relationships and hinders job advancement, ”says López Estebaranz. 24.4% of patients indicate that psoriasis has an impact on family or partner relationships, according to the Next Psoriasis survey. 22.7% are affected in the academic or work environment.
Medicine cannot be done without taking into account the affective part, without treating with empathy, listening, looking at the face, understanding the patient’s personal situation and knowing how it affects him on a day-to-day basis.
Gines insists however obvious it turns out that patients are not just their illness but the circumstances that surround it. “You cannot do medicine without taking into account the affective part, without treating with empathy, listening, looking at the face, understanding the patient’s personal situation and knowing how it affects him on a day-to-day basis.” Ginés, in a sympathetic way, lists concepts that arise in the symposia and meetings with specialists: comprehensive, holistic, patient-centered healthcare. “Yes, they are all good. But let us specify and incorporate this affective model into the system ”, he says, referring to the fact that it is not enough to treat the patient based on scientific evidence but with humanity and without depending on people’s voluntarism. In a systematic way.