Narrative Medicine: A Digital Diary in the Management of Bone and Soft Tissue Sarcoma Patients. Preliminary Results of a Multidisciplinary Pilot Study

• Published in: Journal of clinical medicine 2022-01, Vol.11 (2), p.406
• Main Authors: Cercato, Maria Cecilia, Vari, Sabrina, Maggi, Gabriella, Faltyn, Wioletta, Onesti, Concetta Elisa, Baldi, Jacopo, Scotto di Uccio, Alessandra, Terrenato, Irene, Molinaro, Claudia, Scarinci, Virginia, Servoli, Francesca, Cenci, Cristina, Biagini, Roberto, Ferraresi, Virginia
• Format: Article
• Language: English
• Subjects: Age; Bone cancer; Cancer therapies; Chemotherapy; Clinical medicine; Communication; Diaries; Disease; Empowerment; Illnesses; Medicine; Narratives; Patients; Professionals; Qualitative research; Questionnaires; Radiation therapy; Sarcoma; Storytelling
• ISSN: 2077-0383; 2077-0383
• DOI: 10.3390/jcm11020406

Guidelines for the implementation of narrative medicine in clinical practice exist; however, in Italy, no standard methodology is currently available for the management of oncological patients. Since 2017, at the "Regina Elena" National Cancer Institute, studies using "digital narrative diaries" (DNMLAB platform) have been carried out; this article focuses on a pilot, uncontrolled, real-life study aiming to evaluate the utility of DNM integrated with the care pathway of patients with bone and limb soft tissue sarcomas. Adult patients completed the diary during treatment or follow-up by writing their narrative guided by a set of narrative prompts. The endpoints were: (a) patients' opinions about therapeutic alliance, awareness, and coping ability; (b) healthcare professionals' (HCPs') opinions about communication, therapeutic alliance, and information collection. Open- and closed-ended questions (Likert score: 1-5) were used to assess the items. At the interim analysis of data from seven patients and five HCPs, DNM was shown to improve: (a) the expression of patients' point of view, the perception of effective taking charge, disease awareness, and self-empowerment (score: 4.8/5); (b) patients' communication, relationships, and illness knowledge (score: 4.6-4.8/5). The preliminary results supported the need to integrate patients' narratives with clinical data and encourage further research.