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

Maria Cecilia Cercato,Virginia Scarinci,Francesca Servoli,Sabrina Vari,Irene Terrenato,Jacopo Baldi,Concetta Elisa Onesti,Wioletta Faltyn,Alessandra Scotto Di Uccio,Virginia Ferraresi,Cristina Cenci,Gabriella Maggi,Roberto Biagini,Claudia Molinaro

doi:10.3390/jcm11020406

Maria Cecilia Cercato, Virginia Scarinci + Show 12 more

Open Access

https://doi.org/10.3390/jcm11020406

Copy DOI

Abstract

Background. 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. Methods. 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. Results. 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). Conclusions. The preliminary results supported the need to integrate patients’ narratives with clinical data and encourage further research.

Highlights

Licensee MDPI, Basel, Switzerland.Narrative medicine was first described about 30 years ago as a new approach to the patient/clinician relationship [1]
Patients gave written informed consent to participate in the study, to use digital narrative medicine (DNMLAB), and to the use of data for research and assistance
In order to increase the efficacy of care by improving narrative competence and careful listening, the project developed a communication strategy based on the promotion of reflexive writing among healthcare professionals’ (HCPs), patients, and caregivers

Summary

Introduction

Licensee MDPI, Basel, Switzerland.Narrative medicine was first described about 30 years ago as a new approach to the patient/clinician relationship [1]. It is well known that narration may have a therapeutic potential in itself; in collecting and interpreting information about a patient’s experience of an illness, it can provide healthcare professionals with data useful for clinical purposes, from the formulation of a more accurate and timely diagnosis to the personalization of care [3,4,5,6]. 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

Methods

Results

Discussion

Conclusion