“In the face of a good doctor-patient relationship, in reality there is a dissatisfaction of around 50% of caregivers and 40% of patients from the point of view of communication, of how the symptoms and the evolution of the disease are communicated And this generates anxiety and depression in the patients, but even more so in the caregivers, who find themselves having to face a situation for which they are absolutely not prepared and therefore there is also a greater use of health services than that for which there would really be a need.” This was said by Elisabetta Pupillo, head of the Epidemiology of Neurodegenerative Diseases Unit at the Mario Negri Institute, presenting the results of the ‘What Als Wants’ study, the register that collects data on the experiences of patients with amyotrophic lateral sclerosis (ALS), carried out by the Institute in collaboration with the Italian Amyotrophic Lateral Sclerosis Association (Aisla), during a talk broadcast on Adnkronos.com.
“Another very important fact – continues Pupillo – is that patients and caregivers, faced with the availability of a new job, of a new drug, are willing to take it, precisely because there is no cure, hoping that it will do them some good. Doctors, for their part, believe that patients are looking for a ‘second opinion’, therefore to have additional information compared to what the doctor himself has just provided to the patients”. From this study “perhaps a difficulty emerges in communication or, at least, in receiving the message on the part of patients and caregivers, who are not professionals in the sector – reiterates Pupillo – So we should certainly improve the communication side, but also improve the psycho-emotional assistance, especially for caregivers: more than 70% expressed an unconscious urgency, therefore need, for psychological support. Patients have a lot of trust in everything that is communicated to them and proposed by neurologists. And neurologists appreciate it this trust, in fact the medical relationship between caregiver and patient is very good: more than 70% of those interviewed showed this linearity, this trust”.
While “patients are more interested in finding the cause of the disease and the drugs – adds the expert – doctors, however, aware that we are still far from understanding the causes” of ALS, “are much more unbalanced in their interest in succeeding to find a cure, to give a concrete answer to patients, as soon as possible. Obviously, step by step, we also move forward in the search for the causes”, says Pupillo who, in thanking the approximately 1,600 patients, caregivers and neurologists who follow these families. and who participated in the study, together with Aisla and the Ministry of Health which financed this important project, the first and only of its kind, concludes: “The results of this study can easily be transferred to other neurological pathologies”.
#Rare #diseases #communication #improved #ALS #patients
