Narrative Medicine: A Digital Diary in the Management of Bone and Soft Tissue Sarcoma Patients. Preliminary Results of a Multidisciplinary Pilot Study.
bone and soft tissue sarcoma
digital diary
digital narrative medicine
multidisciplinary team care
narrative-based medicine
personalized care
personalized medicine
Journal
Journal of clinical medicine
ISSN: 2077-0383
Titre abrégé: J Clin Med
Pays: Switzerland
ID NLM: 101606588
Informations de publication
Date de publication:
14 Jan 2022
14 Jan 2022
Historique:
received:
05
11
2021
revised:
11
01
2022
accepted:
12
01
2022
entrez:
21
1
2022
pubmed:
22
1
2022
medline:
22
1
2022
Statut:
epublish
Résumé
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.
Sections du résumé
BACKGROUND
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
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
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
CONCLUSIONS
The preliminary results supported the need to integrate patients' narratives with clinical data and encourage further research.
Identifiants
pubmed: 35054100
pii: jcm11020406
doi: 10.3390/jcm11020406
pmc: PMC8779279
pii:
doi:
Types de publication
Journal Article
Langues
eng
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