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 |
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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 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.</description><identifier>ISSN: 2077-0383</identifier><identifier>EISSN: 2077-0383</identifier><identifier>DOI: 10.3390/jcm12237218</identifier><identifier>PMID: 38068266</identifier><language>eng</language><publisher>Switzerland: MDPI AG</publisher><subject>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</subject><ispartof>Journal of clinical medicine, 2023-11, Vol.12 (23), p.7218</ispartof><rights>COPYRIGHT 2023 MDPI AG</rights><rights>2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c379t-b8a182cc7e6c62b86c44bbd5b86a92720cf9343e7c31ff4265477f96586d2b873</cites><orcidid>0000-0001-5723-4279 ; 0000-0002-8346-6601 ; 0000-0002-6854-4771 ; 0000-0002-8360-5026 ; 0000-0002-4448-9931 ; 0000-0002-0187-9323</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/38068266$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Cercato, Maria Cecilia</creatorcontrib><creatorcontrib>Onesti, Concetta Elisa</creatorcontrib><creatorcontrib>Vari, Sabrina</creatorcontrib><creatorcontrib>Maggi, Gabriella</creatorcontrib><creatorcontrib>Faltyn, Wioletta</creatorcontrib><creatorcontrib>Ceddia, Serena</creatorcontrib><creatorcontrib>Terrenato, Irene</creatorcontrib><creatorcontrib>Scarinci, Virginia</creatorcontrib><creatorcontrib>Servoli, Francesca</creatorcontrib><creatorcontrib>Cenci, Cristina</creatorcontrib><creatorcontrib>Biagini, Roberto</creatorcontrib><creatorcontrib>Ferraresi, Virginia</creatorcontrib><title>Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma-A Multidisciplinary Pilot Study</title><title>Journal of clinical medicine</title><addtitle>J Clin Med</addtitle><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.</description><subject>Beliefs, opinions and attitudes</subject><subject>Bone cancer</subject><subject>Cancer patients</subject><subject>Cancer therapies</subject><subject>Care and treatment</subject><subject>Chemotherapy</subject><subject>Clinical medicine</subject><subject>Confidential communications</subject><subject>Data security</subject><subject>Diagnosis</subject><subject>Diaries</subject><subject>Disease</subject><subject>Evaluation</subject><subject>Evidence-based medicine</subject><subject>Health aspects</subject><subject>Illnesses</subject><subject>Medical law</subject><subject>Medical personnel</subject><subject>Medical research</subject><subject>Medicine</subject><subject>Medicine, Experimental</subject><subject>Narratives</subject><subject>Oncology</subject><subject>Patient compliance</subject><subject>Patients</subject><subject>Pilot projects</subject><subject>Practice guidelines (Medicine)</subject><subject>Professionals</subject><subject>Qualitative research</subject><subject>Sarcoma</subject><subject>Surgery</subject><subject>Tumors</subject><issn>2077-0383</issn><issn>2077-0383</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><recordid>eNptkctLHTEUxkNpqaKuui-BbgplNI-ZPLq71b5Aq3B1HTKZ5JrLTHJNMhbX_cebi7ZVabI4H4ff-TicD4A3GB1SKtHR2kyYEMoJFi_ALkGcN4gK-vKR3gEHOa9RfUK0BPPXYIcKxARhbBf8-qFT0sXfWnhmB298sB_hAp74lS96rFWnO-gDLNcV0EGv7GRDgdHBizpVZYY_fbmGn2KwUIcBLqMr8NLnPFu41MnESTcLeDaPxQ8-G78Zfdh6XvgxFrgs83C3D145PWZ78FD3wNWXz5fH35rT86_fjxenjaFclqYXGgtiDLfMMNILZtq274euKi0JJ8g4SVtquaHYuZawruXcSdYJNlSc0z3w_t53k-LNbHNRU93IjqMONs5ZEYmI7DCWW_TdM3Qd5xTqdooIKdtOUib_USs9WuWDiyVpszVVC847IRFlbaUO_0PVP9jJm3o352v_ycCH-wGTYs7JOrVJfqpHUxipberqUeqVfvuw6txPdvjL_smY_ganx6U6</recordid><startdate>20231121</startdate><enddate>20231121</enddate><creator>Cercato, Maria Cecilia</creator><creator>Onesti, Concetta Elisa</creator><creator>Vari, Sabrina</creator><creator>Maggi, Gabriella</creator><creator>Faltyn, Wioletta</creator><creator>Ceddia, Serena</creator><creator>Terrenato, Irene</creator><creator>Scarinci, Virginia</creator><creator>Servoli, Francesca</creator><creator>Cenci, Cristina</creator><creator>Biagini, Roberto</creator><creator>Ferraresi, Virginia</creator><general>MDPI AG</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>K9.</scope><scope>M0S</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0001-5723-4279</orcidid><orcidid>https://orcid.org/0000-0002-8346-6601</orcidid><orcidid>https://orcid.org/0000-0002-6854-4771</orcidid><orcidid>https://orcid.org/0000-0002-8360-5026</orcidid><orcidid>https://orcid.org/0000-0002-4448-9931</orcidid><orcidid>https://orcid.org/0000-0002-0187-9323</orcidid></search><sort><creationdate>20231121</creationdate><title>Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma-A Multidisciplinary Pilot Study</title><author>Cercato, Maria Cecilia ; 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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.</abstract><cop>Switzerland</cop><pub>MDPI AG</pub><pmid>38068266</pmid><doi>10.3390/jcm12237218</doi><orcidid>https://orcid.org/0000-0001-5723-4279</orcidid><orcidid>https://orcid.org/0000-0002-8346-6601</orcidid><orcidid>https://orcid.org/0000-0002-6854-4771</orcidid><orcidid>https://orcid.org/0000-0002-8360-5026</orcidid><orcidid>https://orcid.org/0000-0002-4448-9931</orcidid><orcidid>https://orcid.org/0000-0002-0187-9323</orcidid><oa>free_for_read</oa></addata></record> |
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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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