Improving survival is not the only relevant outcome for patients suffering from malignant pleural mesothelioma and their caregivers: an explorative study (Pointinme_Explor)

Background: The study was aimed at exploring the patients’ and caregivers’ expectations on treatment outcomes, the understanding of the information delivered by the oncologists during the first and reevaluation visits and the role of the general practitioners (GP) in the management of patients suffering from advanced Malignant Pleural Mesothelioma (MPM) in the area of Casale Monferrato, in the North West of Italy, where the incidence of mesothelioma is more than 30 times higher than the median incidence in Europe. A multiprofessional mesothelioma unit involving specialists and also GPs has been created since 2012 to globally assist patients in each step of the diagnostic and therapeutic process. This study was conducted to better understand the need of MPM patients in our area and their satisfaction about the care provided within the unit. Methods: Patients and caregivers were asked to fill in a multiple-choice questionnaire after the first visit or the re-evaluation visits (the ones in which a new treatment program was communicated) asking what is most important as the result of treatment, how much the oncologist was clear in communicating the diagnosis, the therapeutic options, the side effects, the role of the GP in supporting the care process and the trust-relationship with both the referral oncologist and the GP. Patients were also asked about the importance of having a referral caregiver. Results: From March to August 2019, 31 consecutive patients, 18 males and 13 females, median age 71 (IQR 66-75) and 29 caregivers, 7 males and 22 females, median age 63 (IQR 49-67) were enrolled in the study. Improving survival was the most relevant expected outcome in 48% and 69% of patients and caregivers, respectively followed by maintenance of the quality of life (38% and 17%), having the minimal number of accesses in the hospital as possible (8% vs 4%) and improving symptoms (6% and 10%). Seventy-seven% of patients and 72% of caregivers stated that the communication of the diagnosis was very clear, 74% of patients and 72% of caregivers stated that explanations about treatments were very clear, 90% of both patients and caregivers stated that the communication of side effects was sufficiently clear. Ninety% of patients and 86% of caregivers are completely satisfied about the relationship with the referral oncologist whereas 58% of patients and 55% of caregivers are completely satisfied with the support given by the GP. Ninety-three% of patients think that having a referral caregiver is of utmost importance and 80% of patients appreciate the presence of a palliative expert in the patient-care team whereas 52% of patients think to require a psychological support. Conclusions: This study highlights that in the high incidence area of MPM of Casale Monferrato, only half of advanced MPM patients and less that 2/3 of caregivers think that improving survival is the most relevant treatment outcome. The majority of patients and caregivers state to have clear information about diagnosis, treatment and related side effects and feel satisfied about the relationship with the specialists of the mesothelioma unit.