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The voice of patients

Raising awareness on patients' perspectives about treatment adherence in Malaga, Spain.

Francisca Leiva Fernández MD PhD, Multiprofessional Teaching Unit for Family and Community Care AP Málaga-Guadalhorce District. IBIMA-BIONAND Platform. Malaga. Spain

In November 2023, a Conference was organized in Malaga to raise awareness about treatment adherence, in which patients, representatives of patient associations, healthcare professionals, both residents and their tutors, and researchers from the Malaga Biomedical Research Institute participated. 

Opening Ceremony of the Conference by the President of the Official College of Physicians of Malaga, that gave way to the celebration of the round table entitled “The voice of the patient”

I was in charge of moderating a roundtable entitled “The Voice of the Patient”. The speakers were two patient representatives: Alfredo de Pablo (president of the Málaga Accessible Association) and Ester Galicia (president of the Málaga Diabetic Association). They were asked to answer three questions during their presentation. These questions focused on the ABC taxonomy1,2:

  • i) what makes patients start taking their medication?;
  • ii)what keeps patients taking their medication (persistence)?; and
  • iii) what makes patients stop taking their medication?

The rest of the attendees were encouraged to participate at any time during the development of this round table. Thirty-three people attended, of which nineteen came from patient associations.

The responses from the attendees were very striking. One of the main concerns shared, especially by healthcare professionals, was why patients do not comply with the treatments recommended to them. Some patients shed light with their responses on this issue. Some of them agreed that when they are diagnosed with a chronic disease, the first thing they should do is accept this diagnose and then integrate it into their lifestyle, because “a chronic illness changes one’s own life and that of the family”. They see treatment as “the possibility of returning to who I was”. However, when they realize that this is not going to happen, they have a major crisis that in many cases leads them to stop the medication.

Patients demand more time with professionals so that they can clearly understand why they should undergo this treatment. A patient who is a mathematician and diagnosed with diabetes decided to stop treatment and gave her reasons for doing so: “I could not understand why if I ate the same amount of food every day and took the same amount of medication, my blood glucose levels varied from one day to the next, when, from a mathematical point of view, they should have matched. So I felt that the drugs were not helping me to control my blood sugar levels and stopped taking them”.

One of the main concerns highlighted in relation to taking medication was its side effects. Patients demanded that healthcare professionals explain in more detail what could happen to them when taking the medication.

Many of the attendees saw technological solutions as useful tools, and in many cases used them. The main tools they reported finding useful were mobile phone features, such as alarms to remind them to take their medicines, as well as mobile apps, or scheduled pill dispensers, but they felt that this is not enough. They would need to have more information available and accessible about their diseases, the benefits and consequences of their treatments and about tools to help them to make their new situation more bearable every day. In this regard, they pointed to the important role of patient associations in enabling the generation and transmission of this valuable knowledge.

At the end of the roundtable, patients appreciated the possibility of holding such meetings where they can speak on equal terms with healthcare professionals and researchers. For their part, the healthcare professionals highlighted having been able to listen to patients’ opinions and experiences outside the healthcare setting. Finally, researchers said that hearing the patients’ perspective had provided them with a context that would allow them to enrich and better understand the results of their research on MA.

The organization of this conference was a challenge, due to the difficulty of bringing together people who, even though they are living the same reality (facing a chronic condition), handle very different information and language due to their different perspective. One of the main concerns was that the asymmetry of the relationship that could exist between professionals and patients did not block the discourse of the latter. This was resolved by creating a climate of respect and listening among all attendees, and allowing each of them to participate whenever they felt the need and strength to do so. Personally, it was a very enriching experience, with which I became more aware of the importance of knowing the different perspectives around medication adherence.

Take home message: Medication adherence is a concept contextualized in the vital reality of each of the actors involved in the clinical act between professionals and patients. Active listening and effective communication are needed to achieve a better understanding between them, and consequently, improve adherence to treatments, which is a basic aspect of its effectiveness.

References

  1. Vrijens B, De Geest S, Hughes DA, Przemyslaw K, Demonceau J, Ruppar T, Dobbels F, Fargher E, Morrison V, Lewek P, Matyjaszczyk M, Mshelia C, Clyne W, Aronson JK, Urquhart J; ABC Project Team. A new taxonomy for describing and defining adherence to medications. Br J Clin Pharmacol. 2012 May;73(5):691-705. doi: 10.1111/j.1365-2125.2012.04167.x.
  2. Garcia-Cardenas V, Hughes D, Aguilar-Palacio I, Benrimoj SI, Rabanaque MJ, Martinez-Martinez F, Malo S. Spanish translation of the ABC taxonomy for medication adherence. Res Social Adm Pharm. 2023 Sep;19(9):1292-1297. doi: 10.1016/j.sapharm.2023.05.012.