Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma—A Multidisciplinary Pilot Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design and Ethical Considerations
2.2. Patient Population and Healthcare Professional Team
2.3. Intervention
2.4. Endpoints
2.5. Statistical Analysis
3. Results
3.1. Qualitative Results
3.2. The Role of Digital Diary as a Tool for Self-Expression
3.3. The Utility of the Digital Diary for Communication and Care Relationship
4. Discussion
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Pierret, J. The illness experience: State of knowledge and perspectives for research. Sociol. Health Illn. 2003, 25, 4–22. [Google Scholar] [CrossRef]
- Kleinman, A. The Illness Narratives: Suffering, Healing, and the Human Condition; Basic Book, Inc.: New York, NY, USA, 1988. [Google Scholar]
- Charon, R.D.S.; Hermann, N.; Irvine, C.; Marcus, E.R.; Colsn, E.R.; Spencer, D.; Spiegel, M. The Principles and Practice of Narrative Medicine; Oxford University Press: New York, NY, USA, 2017. [Google Scholar]
- Elwyn, G.; Gwyn, R. Narrative based medicine: Stories we hear and stories we tell: Analysing talk in clinical practice. BMJ 1999, 318, 186–188. [Google Scholar] [CrossRef]
- Fioretti, C.; Mazzocco, K.; Riva, S.; Oliveri, S.; Masiero, M.; Pravettoni, G. Research studies on patients’ illness experience using the Narrative Medicine approach: A systematic review. BMJ Open 2016, 6, e011220. [Google Scholar] [CrossRef]
- Johnston, S.C. Anticipating and training the physician of the future: The importance of caring in an age of artificial intelligence. Acad. Med. 2018, 93, 1105–1106. [Google Scholar] [CrossRef]
- Istituto Superiore di Sanità—Centro Nazionale Malattie Rare. Consensus Conference: “Linee di indirizzo per L’utilizzo Della Medicina Narrativa in Ambito Clinico- Assistenziale, per le Malattie Rare e Cronico-Degenerative”. Sole24Ore Sanità, Milano. 2015. Available online: https://www.redattoresociale.it/media/_linee_di_indirizzo_per_l_utilizzo_della_medicina_narrativa_in_ambito_clinico-assistenziale_per_le_malattie_rare_e_cronico-degenerative_consensus_conference (accessed on 12 November 2023).
- Cercato, M.C. Narrative medicine in the oncological clinical practice: The path from a storytelling intervention to a narrative digital diary. Recenti Prog. Med. 2018, 109, 324–327. [Google Scholar]
- Cercato, M.C.; Colella, E.; Fabi, A.; Bertazzi, I.; Giardina, B.G.; Di Ridolfi, P.; Mondati, M.; Petitti, P.; Bigiarini, L.; Scarinci, V.; et al. Narrative medicine: Feasibility of a digital narrative diary application in oncology. J. Int. Med. Res. 2022, 50, 3000605211045507. [Google Scholar] [CrossRef]
- Cercato, M.C.; Vari, S.; Maggi, G.; Faltyn, W.; Onesti, C.E.; Baldi, J.; di Uccio, A.S.; Terrenato, I.; Molinaro, C.; Scarinci, V.; et al. Narrative Medicine: A Digital Diary in the Management of Bone and Soft Tissue Sarcoma Patients. Preliminary Results of a Multidisciplinary Pilot Study. J. Clin. Med. 2022, 11, 406. [Google Scholar] [CrossRef]
- Cenci, C.; Cercato, M.C.; Mecarelli, O. Narrative medicine in the digital time. Scenario, methods, and clinical use in epileptology and oncology. In Treatment Relationships in the Digital Era; Ingrosso, M., Pierucci, P., Eds.; Aracne Publisher: Canterano, Rome, Italy, 2020; pp. 69–88. [Google Scholar]
- Digital Narrative Medicine (DNM). La Piattaforma Digitale per L’applicazione Della Medicina Narrativa Nella Pratica Clinica. Available online: http://digitalnarrativemedicine.com/it/ (accessed on 12 November 2023).
- Gatta, G.; Capocaccia, R.; Botta, L.; Mallone, S.; De Angelis, R.; Ardanaz, E.; Comber, H.; Dimitrova, N.; Leinonen, M.K.; Siesling, S.; et al. Burden and centralised treatment in Europe of rare tumours: Results of RARECAREnet-a population-based study. Lancet Oncol. 2017, 18, 1022–1039. [Google Scholar] [CrossRef]
- Gronchi, A.; Miah, A.B.; Dei Tos, A.P.; Abecassis, N.; Bajpai, J.; Bauer, S.; Biagini, R.; Bielack, S.; Blay, J.Y.; Bolle, S.; et al. Soft tissue and visceral sarcomas: ESMO-EURACAN-GENTURIS Clinical Practice Guidelines for diagnosis, treatment and follow-up(☆). Ann. Oncol. 2021, 32, 1348–1365. [Google Scholar] [CrossRef]
- Strauss, S.J.; Frezza, A.M.; Abecassis, N.; Bajpai, J.; Bauer, S.; Biagini, R.; Bielack, S.; Blay, J.Y.; Bolle, S.; Bonvalot, S.; et al. Bone sarcomas: ESMO-EURACAN-GENTURIS-ERN PaedCan Clinical Practice Guideline for diagnosis, treatment and follow-up. Ann. Oncol. 2021, 32, 1520–1536. [Google Scholar] [CrossRef]
- Personal Data Code Protection. Legislat. Decree No. 196 of 30 June 2003. Published in the Italian Official Journal N. 174, July 29, 2003, Supplementary N. 123. Available online: https://www.camera.it/parlam/leggi/deleghe/Testi/03196dl.htm (accessed on 31 May 2021).
- Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the Protection of Natural Persons with Regard to the Processing of Personal Data and on the Free Movement of Such Data, and Repealing Directive 95/46/EC (General Data Protection Regulation. Published in the Official Journal of the European Union L 119, May 4, 2016. Available online: https://op.europa.eu/it/publication-detail/-/publication/3e485e15-11bd-11e6-ba9a-01aa75ed71a1/language-en (accessed on 31 May 2021).
- Likert, R. A Technique for the Measurement of Attitudes. Arch. Psychol. 1932, 140, 1–55. [Google Scholar]
- Ogrinc, G.; Davies, L.; Goodman, D.; Batalden, P.; Davidoff, F.; Stevens, D.; Baker, G.R.; Barnsteiner, J.; Foster, T.C.; Gali, K.; et al. SQUIRE 2.0 (Standards for Quality Improvement Reporting Excellence): Revised publication guidelines from a detailed consensus process. BMJ Qual. Saf. 2016, 25, 986–992. [Google Scholar] [CrossRef]
- Little, M.; Jordens, C.F.; Paul, K.; Montgomery, K.; Philipson, B. Liminality: A major category of the experience of cancer illness. Soc. Sci. Med. 1998, 47, 1485–1494. [Google Scholar] [CrossRef]
- Testa, M.; Cappuccio, A.; Latella, M.; Napolitano, S.; Milli, M.; Volpe, M.; Marini, M.G.; TRUST participants. The emotional and social burden of heart failure: Integrating physicians’, patients’, and caregivers’ perspectives through narrative medicine. BMC Cardiovasc. Disord. 2020, 20, 522. [Google Scholar] [CrossRef]
- Tonini, M.C.; Fiorencis, A.; Iannacchero, R.; Zampolini, M.; Cappuccio, A.; Raddino, R.; Grillo, E.; Albanese, M.; Allais, G.; Bassano, M.A.; et al. Narrative Medicine to integrate patients’, caregivers’ and clinicians’ migraine experiences: The DRONE multicentre project. Neurol. Sci. 2021, 42, 5277–5288. [Google Scholar] [CrossRef]
- Volpe, M.; Testa, M. Tales in cardiology. Eur. Heart J. 2019, 40, 800–802. [Google Scholar] [CrossRef]
- Cenci, C.; Mecarelli, O. Digital narrative medicine for the personalization of epilepsy care pathways. Epilepsy Behav. 2020, 111, 107143. [Google Scholar] [CrossRef]
- Zocher, U.; Bertazzi, I.; Colella, E.; Fabi, A.; Scarinci, V.; Franceschini, A.; Cenci, C.; Cognetti, F.; Cercato, M.C. Applicazione della medicina narrativa nella pratica clinica oncologica: L’impatto sull’operatore [Application of narrative medicine in oncological clinical practice: Impact on healthcare professional]. Recenti Prog. Med. 2020, 111, 154–159. [Google Scholar] [CrossRef]
- Carlick, A.; Biley, F.C. Thoughts on the therapeutic use of narrative in the promotion of coping in cancer care. Eur. J. Cancer Care 2004, 13, 308–317. [Google Scholar] [CrossRef]
- Gibbs, R.W.; Franks, H. Embodied metaphor in women’s narratives about their experiences with cancer. Health Commun. 2002, 14, 139–165. [Google Scholar] [CrossRef]
- Semino, E.; Demjén, Z.; Hardie, A.; Payne, S.; Rayson, P. Metaphor, Cancer and the End of Life: A Corpus-Based Study; Routledgedded: New York, NY, USA, 2018. [Google Scholar]
- Fergus, K.; Ahmad, S.; Ianakieva, I.; McLeod, D.; Carter, W. Metaphor and meaning in an online creative expression exercise to promote dyadic coping in young couples affected by breast cancer. Arts Health 2017, 9, 139–153. [Google Scholar] [CrossRef]
Questionnaire’s Items | Mean Score (SD) | |
---|---|---|
Feasibility | Diary easy to use | 4.8 (0.45) |
Diary immediacy and comprehensibility | 4.7 (0.48) | |
Adequacy of one’s computer skills | 4.4 (0.81) | |
Opportunity to provide important personal information | 4.8 (0.54) | |
Opportunity to provide information that one did not want/could not communicate verbally | 4.5 (0.63) | |
Usefulness | Opportunity to express one’s point of view | 4.7 (0.48) |
Perception of being more effectively followed and understood | 4.6 (0.63) | |
Improved awareness of the disease | 4.7 (0.60) | |
Improved coping skills | 4.4 (0.81) | |
Improved care relationship | 4.4 (0.89) | |
Recommendation to introduce the digital diary in clinical practice | 4.8 (0.40) |
Questionnaire’s Items | First Evaluation, Mean Score (SD) | Second Evaluation, Mean Score (SD) | p-Value * | |
---|---|---|---|---|
Feasibility | Diary easy to use | 4.6 (0.55) | 4.8 (0.45) | 0.317 |
Diary immediacy and comprehensibility | 4.6 (0.55) | 4.4 (0.55) | 0.564 | |
Time management to propose/evaluate the diary during the visits | 3.8 (0.45) | 4.8 (0.45) | 0.059 | |
Optimized clinical examination (length) | 3.2 (0.84) | 4.0 (0.00) | 0.102 | |
Optimized clinical examination (quality) | 4.4 (0.55) | 4.6 (0.55) | 0.564 | |
Usefulness | Improved communication | 4.8 (0.45) | 4.8 (0.45) | 1.000 |
Improved care relationship | 4.4 (0.55) | 4.4 (0.55) | 1.000 | |
Deeper knowledge of patient | 4.6 (0.55) | 4.4 (0.55) | 0.317 | |
Improved therapeutic alliance | 4.8 (0.45) | 4.8 (0.45) | 1.000 | |
Focus on key points of the care history | 4.0 (0.00) | 4.0 (0.00) | 1.000 | |
Improved team relationship | 4.2 (0.84) | 3.6 (0.89) | 0.083 |
Adherent Patients, n (%) | Non-Adherent Patients, n (%) | |
---|---|---|
Population size | 17 (56.7%) | 13 (43.3%) |
Age (years), mean (SD) | 41 (8.2) | 45.8 (14.5) |
Sex: | ||
– Males | 6 (35.3%) | 6 (46.2%) |
– Females | 11 (64.7%) | 7 (53.8%) |
Diagnosis: | ||
– Soft tissue sarcoma | 9 (52.9%) | 8 (61.5%) |
– Bone sarcoma | 8 (47.1%) | 5 (38.5%) |
Disease extension: | ||
– Localized | 12 (70.6%) | 10 (76.9%) |
– Metastatic | 5 (29.4%) | 3 (23.1%) |
Treatment phase at the time of enrollment: | ||
– Neoadjuvant | 5 (29.4%) | 6 (46.2%) |
– Adjuvant | 4 (23.5%) | 2 (15.4%) |
– Palliative treatment | 4 (23.5%) | 3 (23.1%) |
– Follow-up | 4 (23.5%) | 1 (7.7%) |
– Surgery | 0 (0%) | 1 (7.7%) |
Medical treatment received: | ||
– Chemotherapy | 12 (70.6%) | 7 (53.8%) |
– Chemoradiotherapy | 5 (29.4%) | 6 (46.2%) |
Type of chemotherapy@ | ||
– Epirubicin–ifosfamide | 9 (52.9%) | 6 (46.2%) |
– Ifosfamide | 4 (23.5%) | 0 (0%) |
– VAC/VID/EI | 2 (11.8%) | 2 (15.4%) |
– EUROBOSS regimen | 1 (5.9%) | 1 (7.7%) |
– MAP | 1 (5.9%) | 0 (0%) |
– Other | 0 (0%) | 4 (30.8%) |
Patients (n = 13), n (%) | |
---|---|
Reason for not using the digital diary: | |
1. I had forgotten the e-mail invitation to participate | 3 (23.1%) |
2. I do not feel comfortable with digital technology | 3 (23.1%) |
3. I found it difficult to use | 1 (7.7%) |
4. I had technical difficulties trying to use it | 5 (38.5%) |
5. I did not feel like talking about myself | 0 (0.0%) |
6. I do not believe it is really useful | 0 (0.0%) |
7. I prefer talking about myself during medical visits | 5 (38.5%) |
8. I did not really understand what it was for | 0 (0.0%) |
9. I was worried that my privacy was not guaranteed | 0 (0.0%) |
10. Other reasons (busy with other commitments) | 3 (23.1%) |
Intentions regarding diary use in the near future: | |
1. I will inform my doctor that I do not intend to use it | 0 (0.0%) |
2. I would like to receive a new e-mail invitation to participate | 10 (76.9%) |
3. I will start using it | 9 (69.2%) |
4. I do not think I have enough time for this project | 0 (0.0%) |
Habitual Internet use for: | |
1. Search for information | 9 (69.2%) |
2. Access to social network | 9 (69.2%) |
3. E-mail | 9 (69.2%) |
4. Infrequent internet use | 1 (7.7%) |
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 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/).
Share and Cite
Cercato, M.C.; Onesti, C.E.; Vari, S.; Maggi, G.; Faltyn, W.; Ceddia, S.; Terrenato, I.; Scarinci, V.; Servoli, F.; Cenci, C.; et al. Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma—A Multidisciplinary Pilot Study. J. Clin. Med. 2023, 12, 7218. https://doi.org/10.3390/jcm12237218
Cercato MC, Onesti CE, Vari S, Maggi G, Faltyn W, Ceddia S, Terrenato I, Scarinci V, Servoli F, Cenci C, et al. Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma—A Multidisciplinary Pilot Study. Journal of Clinical Medicine. 2023; 12(23):7218. https://doi.org/10.3390/jcm12237218
Chicago/Turabian StyleCercato, Maria Cecilia, Concetta Elisa Onesti, Sabrina Vari, Gabriella Maggi, Wioletta Faltyn, Serena Ceddia, Irene Terrenato, Virginia Scarinci, Francesca Servoli, Cristina Cenci, and et al. 2023. "Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma—A Multidisciplinary Pilot Study" Journal of Clinical Medicine 12, no. 23: 7218. https://doi.org/10.3390/jcm12237218
APA StyleCercato, M. C., Onesti, C. E., Vari, S., Maggi, G., Faltyn, W., Ceddia, S., Terrenato, I., Scarinci, V., Servoli, F., Cenci, C., Biagini, R., & Ferraresi, V. (2023). Narrative Medicine: A Digital Diary in the Management of Patients with Bone and Soft Tissue Sarcoma—A Multidisciplinary Pilot Study. Journal of Clinical Medicine, 12(23), 7218. https://doi.org/10.3390/jcm12237218