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The SLA diagnosis must become a plan of action - a study carried out at ITK (Institute of Cell Therapy)

"Conveying SLA diagnosis and prognosis - experiences of patients in Poland" – this is the title of the study carried out at the Institute of Cell Therapy, the results of which were presented at the international Communication, Medicine, and Ethics conference in Birmingham (UK). The results of a study comprising Institute’s patients will help to create a better clinical communication teaching programme for medical faculties’ students.

The idea to examine the important area of conveying the diagnosis to patients with rare diseases appeared for the first time during conversations with patients of the Institute of Cell Therapy. When talking to our patients, the problem of diagnosis was often mentioned. On the one hand, this problem was associated with many divergent diagnoses that have been made by physicians before the diagnosis of SLA, and on the other, with the process of conveying the diagnosis and poor prognosis - says Stanisław Maksymowicz, MD, PhD, clinical sociologist, researcher at the Institute of Cell Therapy, adjunct professor at the Department of Psychology, Clinical Logopedics and Social Sciences in Medicine, the Faculty of Health Sciences of Collegium Medicum of the University of Warmia and Mazury in Olsztyn. This study was carried out in cooperation with Maria Libura, head of the Department of Didactics and Medical Simulation of CM UWM.

The diagnosis is an extremely important aspect of coping with the disease, due to the fact that conveying an information about poor prognosis (like in the case of SLA diagnosis) is one of the most difficult aspects of clinical communication. Unfavourable information alters patient's view of his future, it triggers strong emotions and activates defence mechanisms. Therefore, the knowledge of appropriate communication techniques and the mastery of practical skills to convey this type of information is of particular importance. Unfortunately, as indicated by the results of our preliminary study, most of our patients have not received the information about the diagnosis in a way that would allow them to plan further activities, such as rehabilitation. Many people recalled the moment of conveying the diagnosis as very traumatic. Hardly any patient has received information from a physician about how to deal with the disease and what to do next. Medicine always gives hope, even if it is a slowing down the disease or maintaining high quality of life for as long as possible - emphasizes Dr. Maksymowicz.

Another problem lies in the process of patients' diagnosis, which often lasted a year or more and most patients want to know the diagnosis as soon as possible in order to start fighting the disease.

Conversations with patients were also the source of positive examples of communication at the physician-patient level. Many doctors, despite the lack of earlier contact with this rare disease, have undergone additional trainings with the view to help patients; they even looked themselves for treatment or rehabilitation opportunities. However, this applied mainly to smaller centres in Poland - says Dr. Maksymowicz. And he emphasizes that such approach towards patients should be adopted everywhere, because the diagnosis of SLA is the beginning of the road, the preparation of a plan for Patients. - And we will strive to achieve this goal by organizing a communication training program at University of Warmia and Mazury - he concludes.

This preliminary study was approved by the Committee for Scientific Research Ethics at the University of Warmia and Mazury in Olsztyn. Its results will be used to prepare a larger questionnaire for the needs of nationwide study. The aim of the study is to introduce elements related to the conveying of a difficult diagnosis of a rare disease to a study program for medical faculties’ students.

We would like to thank Institute's Patients and their Families for their participation in the study.