Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma-A Multidisciplinary Pilot Study

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 pa...

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Veröffentlicht in:Journal of clinical medicine 2023-11, Vol.12 (23), p.7218
Hauptverfasser: Cercato, Maria Cecilia, Onesti, Concetta Elisa, Vari, Sabrina, Maggi, Gabriella, Faltyn, Wioletta, Ceddia, Serena, Terrenato, Irene, Scarinci, Virginia, Servoli, Francesca, Cenci, Cristina, Biagini, Roberto, Ferraresi, Virginia
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container_end_page
container_issue 23
container_start_page 7218
container_title Journal of clinical medicine
container_volume 12
creator Cercato, Maria Cecilia
Onesti, Concetta Elisa
Vari, Sabrina
Maggi, Gabriella
Faltyn, Wioletta
Ceddia, Serena
Terrenato, Irene
Scarinci, Virginia
Servoli, Francesca
Cenci, Cristina
Biagini, Roberto
Ferraresi, Virginia
description 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.
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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. 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source PubMed Central Open Access; MDPI - Multidisciplinary Digital Publishing Institute; EZB-FREE-00999 freely available EZB journals; PubMed Central
subjects Beliefs, opinions and attitudes
Bone cancer
Cancer patients
Cancer therapies
Care and treatment
Chemotherapy
Clinical medicine
Confidential communications
Data security
Diagnosis
Diaries
Disease
Evaluation
Evidence-based medicine
Health aspects
Illnesses
Medical law
Medical personnel
Medical research
Medicine
Medicine, Experimental
Narratives
Oncology
Patient compliance
Patients
Pilot projects
Practice guidelines (Medicine)
Professionals
Qualitative research
Sarcoma
Surgery
Tumors
title Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma-A Multidisciplinary Pilot Study
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