Infectious diseases are one of the leading causes of morbidity and mortality worldwide. Specifically, they are the cause of one in three deaths in the world. In January 2010, the World Health Organization (WHO) published a ready of the 13 challenges that most threaten health around the world for the new decade and put in the middle of the debate stopping infectious diseases such as HIV, tuberculosis, viral hepatitis, malaria, and sexually transmitted infections (STIs) .
Infectious diseases, which can affect anyone, are caused by pathogenic microorganisms such as bacteria, viruses, fungi and protozoa, which enter the body and multiply until they develop the disease. Most are transmitted from one person to another and, although many are mild, others are more serious and have been shown time and again that they are one of the great protagonists of human health.
HIV, a chronic condition that poses several challenges
In the case of the Acquired Immunodeficiency Virus (HIV), the number of new diagnoses in Spain in 2019 stood at almost 2,700, which represents a rate of almost 6 per 100,000 inhabitants, according to the data provided by the Ministry of Health. In the last decade, HIV has registered a sustained incidence, although this does not mean that we are close to an effective control, despite the advances.
Furthermore, it is estimated that 18% of people with HIV infection are unaware that they are infected; According to the same data, only 82% of people with HIV are diagnosed.
To improve figures like these, the United Nations global strategy on HIV / AIDS (UNAIDS) known as “90-90-90”, Whose main objectives are that 90% of those infected with HIV know that they are, that 90% are in treatment and that 90% have an undetectable viral load. A quarter 90 has been added so that 90% of people with HIV with this undetectable viral load have a good health-related quality of life and zero discrimination.
This reality is driving a new approach to treating the lives of people living with HIV. This means that not only are medical advances and treatments important and necessary, but it is also essential that people who have to live with this disease have their own voice and are involved in the treatment process and decision-making.
To respond to this need, the Fundación Jiménez Díaz, Rey Juan Carlos de Móstoles, Infanta Elena de Valdemoro and General de Villalba university hospitals promoted the E-Res-Salud HIV program, that precisely what it seeks is to give a leading role to these people, turning them into managers of their own health process.
Give a voice to people with HIV
Thanks to initiatives like this one, promoted by the Clinical and Organizational Innovation Unit (UICO) of these four hospitals, “we can individualize the care and care that we offer them to the maximum,” admits Dr. Alfonso Cabello, associate chief of the Internal Medicine Service. and specialist of the Infectious Diseases Section at the Jiménez Díaz Foundation. This represents a change in the management of HIV infection, which has changed a lot in the last 40 years. It has gone from being a “death sentence” to a chronic infection that is controlled with drugs.
The person with HIV, therefore, has gone from having to face death to facing problems derived from chronicity, such as comorbidities, aging or frailty, new problems that also require a change in the health care offered to them. The new challenges must be focused on knowing “what are the priorities of the patient”, who assumes the leading role and participates actively because “he can convey how he is living his disease and how it affects his daily life”, adds Dr. Beatriz Álvarez, specialist of the same service and section.
And it does so, in the case of the E-Res-Salud VIH program, through PROMs and PREMs questionnaires that measure the health results reported by patients and the experience lived during their process, collecting and evaluating relevant aspects at key moments from the first year after diagnosis. “This process or care trajectory lasts the entire life of these patients, so our goal is that they begin to report their experience to us from the moment of diagnosis, but also that they continue to do so periodically throughout their follow-up with us, and introduce new metrics evaluation of patients, who have come to stay and that serve us to attend to some aspects of the patient that do have value for him ”, admit the experts. !
Based on the answers, the doctors can follow the evolution of each one of them and delve into issues such as quality of life, the impact that treatment has on them, the stigma associated with the disease and their experience in the care they receive .
According to the study Positive Perspectives, people who can be involved in their decisions about HIV therapy are more convinced and satisfied with your treatment. The QuirónSalud initiative has already met, in its first four months of operation, its response target in 30% of patients, with the participation of some 1,2000 patients out of the 4,000 included in the program.
Thanks to initiatives like this and to tools such as the Patient Portal, where the clinical history is recorded, the specialists and the clinical team have the ability to react, in real time (and even anticipate) what the patient needs. Resilience, commitment and greater participation are some of the main benefits for the user.