| Autor: |
Cercato MC; Epidemiology and Tumor Registry Unit, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Onesti CE; Sarcomas and Rare Tumors Departmental Unit, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Vari S; Sarcomas and Rare Tumors Departmental Unit, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Maggi G; Psychology Unit, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Faltyn W; Orthopaedic Oncology Unit, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Ceddia S; Sarcomas and Rare Tumors Departmental Unit, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Terrenato I; Biostatistics and Bioinformatics Unit-Scientific Direction, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Scarinci V; Digital Library 'R.Maceratini', IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Servoli F; Digital Library 'R.Maceratini', IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Cenci C; Digital Narrative Medicine (DNM s.r.l.), 00161 Rome, Italy., Biagini R; Orthopaedic Oncology Unit, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy., Ferraresi V; Sarcomas and Rare Tumors Departmental Unit, IRCCS Regina Elena National Cancer Institute, 00144 Rome, Italy. |
| Abstrakt: |
Although patient narratives have been increasingly introduced in various fields of medicine, a standard method in clinical practice is still lacking. The objectives of this pilot study were to evaluate the feasibility and usefulness of a digital narrative diary integrated into the care pathway of patients with bone sarcoma and limb soft tissue sarcoma both from the patients' and the healthcare professionals' (HCPs) perspectives. A digital platform, DNMLAB, was designed to obtain guided narratives from patients during their pathway of care in compliance with confidentiality and data protection laws. The diary was used for patients, often young, facing a rare and impactful disease that is difficult to manage and with few opportunities to share experiences. The multidisciplinary team shared the narratives and integrated them into the patient's treatment pathway. Narrative prompts were adequate for the care pathway. Patients correctly considered the diary as a shared area to think about their condition, and HCPs considered it "a shared area growing at each meeting with the patient". The main advantages reported by patients were increased awareness, the opportunity to express their opinion on cures and important personal needs and the perception of better taking charge (score ≥ 4.6). The main advantages of HCP were improved communication, therapeutic alliance, and deeper knowledge of patients. This study confirmed the authors' previous experiences, showing that a digital narrative process is feasible and useful for oncology clinical practice according to patients and HCPs. |
