Los mental health and nervous system problems center present a huge prevalence in people living with HIV. In fact, it is estimated that approximately half of the patients with this infection have neuropsychiatric disorders. In this sense, disorders such as insomnia, headache, depression and anxiety are the most frequent and negatively influence the quality of life of people with HIV. These are some of the main conclusions of the “Day Dialogues aVIHertos: the power of communication between the patient and his medical team in HIV” that, with the collaboration of Gilead Scienceshas been held in Barcelona.
In the words of Stephen Martinezof the Hospital Universitari Clínic i Provincial de Barcelona, ”about 40% of people with HIV also suffer from a disorder related to mental health and up to 28 percent were taking psychoactive drugs by choice. Today, the best way to respond and solve this problem is to care for the patient with a multidisciplinary vision, integrating specialized professionals into the medical team who treat and examine the effects they may have on the quality of life of patients”.
The origin of these disorders is very varied and can be grouped into several causes. Among the most relevant, the experts participating in the conference have highlighted the emotional impact of suffering from an incurable diseasethe stigma associated with HIV, substance abuse or the effect of antiretroviral therapy (ART) itself, so that the neurotoxicity of some antiretroviral treatments can influence treatment compliance.
In this sense, Elisabet Deigfrom the General Hospital of Granollers, has underlined the importance of choosing treatments that go beyond viral suppression and adapt to the reality of each person “Currently, we have highly effective and well-tolerated therapeutic solutions for those who suffer from this infection. Thanks to them, HIV patients live longer and better and, as a consequence, diseases that typically arise with age begin to appear. Keeping them under control is essential to have a good quality of life.”
Improved doctor-patient communication
The participants in the conference have drawn attention to the results of recent studies that underline the enormous differences that exist when comparing the perceptions of people living with HIV and the specialist doctors who treat them. The comparison reveals numerous ongoing patient-reported symptoms, such as anxiety, sadness, or tiredness, that doctors do not adequately recognize.
Some of these symptoms could be associated with ART, so if they are detected, could be solved by changing the treatment. For this reason, it is key to develop communication between the person with HIV and their medical team to highlight those symptoms and concerns that impact them and, thus, improve their therapeutic approach. For it, there are tools (validated questionnaires and Patient Reporting Outcomes -PROs) that have shown their usefulness in preparing the consultation and address, without fear, those issues that concern patients and that the medical team should be aware of.
From the community perspective Juan Sebastian Hernandez of GTT, has highlighted that “patients are asking for a new change in care: for them there are other priorities such as managing the suffering they suffer, enduring a huge emotional burden for being carriers of the HIV virus, or fight against the feeling of not having faced the disease. All this affects their mental health, and therefore negatively affects their quality of life and well-being” and adds “this is coupled with the fact that they have many difficulties in expressing their emotions, their desire to live, and it is in the interaction between peers where offers them that opportunity with specifically trained people”
The fundamental role of Nursing
A fundamental role in this communication is played by Nursing, since, as explained by Roser Fontof the Hospital Universitari Mútua Terrassa, “nursing accompaniment contributes to improving adherence to treatment, optimizing communication between the people we care for and health professionals, by psychological well-being and work against social esteem among other aspects. In addition, having care protocols that place the patient at the center of the medical strategy, where all decisions are personalized and individualized, favors the response capacity of health services when it comes to meeting their needs, preferences and values”.
To advance communication between patient and medical team, Gilead has launched #ImproveyourHIV, an awareness campaign aimed at improving doctor-patient communication. This initiative initiate the importance of preparing the consultationto do this, makes a series of validated questionnaires available to patients and medical teams that can be of great help in detecting certain symptoms and guiding the conversation.
In addition, through the website túresvihda.es, people living with HIV are offered some necessary tools to prepare the consultation, such as the PSQI questionnaires or Pittsburgh Sleep Quality Index; Quality of life Whoqol-Hiv-Bref; and the SMAQ scale (Simplified Medication Adherence Questionnaire).
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