An Integrated Care Approach to Improve Well-Being in Breast Cancer Patients.

BACKGROUND: Breast cancer (BC) treatment has recently been revolutionized by the introduction of newer targeted agents, that helped tailoring therapies around the single patient. Along with increased survival rates, a careful evaluation of diet, lifestyle habits, physical activity, emotional and psychological experiences linked to the treatment journey, is now mandatory. However, a true proposal for an omnicomprehensive and "integrative" approach is still lacking in literature. METHODS: A scientific board of internationally recognized specialists throughout different disciplines designed a shared proposal of holistic approach for BC patients. RESULTS: A narrative review, containing information on BC treatment, endocrinological and diet aspects, physical activity, rehabilitation, integrative medicine, and digital narrative medicine, was developed. CONCLUSIONS: In the context of a patient-centered care, BC treatment cannot be separated from a patient's long-term follow-up and care, and an organized interdisciplinary collaboration is the future in this disease's cure, to make sure that our patients will live longer and better. TRIAL REGISTRATION: NCT05893368: New Model for Integrating Person-based Care (PbC) in the Treatment of Advanced HER2-negative Breast Cancer (PERGIQUAL). Registration date: 29th May 2023.

Digital narrative medicine for the personalization of epilepsy care pathways.

Among neurological conditions, epilepsy is the disorder best suited to a narrative approach. In epilepsy, the disease, i.e., the condition from the clinical and therapeutic point of view, the illness, the personal experience and impact of the condition, and the sickness, the representations, and social imaginary of epilepsy, are strongly interdependent. Within this context, the Italian League Against Epilepsy (LICE) has launched a multiyear narrative program in Italy resulting in the foundation of a specific Study Group on Narrative Medicine in Epileptology. The Epimena Study is part of this program and involves the "Epilepsy Center, Department of Human Neurosciences, Sapienza University of Rome and Umberto 1° Hospital". The study consists of a pilot project whose aim is to assess the usefulness and feasibility of integrating narrative medicine methodologies into routine clinical practice through a digital platform. The carrying out of the study is based on the acquisition of narrative elements of the patient that the referring doctor uses, integrating them with clinical data, to share and customize the diagnostic-therapeutic pathway of patients. The Epimena Study preliminary results look encouraging. Over 12 months, 57% of the invited patients (37 out of a total of 65) decided to formalize their registration in the digital diary, and 46% responded to one or more narrative prompt generating the story of their experience. Every patient story was then analyzed according to a methodology (Illness Digital StoryMap - IDS) that made it possible to detect the existential impact of the disease and the perception of care. Patients' overall judgment on the project was positive. Through it, they were able to better focus on themselves, bringing out and communicating information to the physician that otherwise would not have been taken into consideration. The majority of patients involved believe that the methodology should be included in the regular clinical practice or in any case would like to continue using it. The data collected confirmed that the time spent on story sharing contributed objectively to a clinical practice of greater quality and effectiveness.

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 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.

Digital integrated dramatherapy: A feasibility study in women undergoing assisted reproductive technology.

Background: Dramatherapy is a practice of working and playing that uses action methods to facilitate creativity, imagination, learning, insight and growth. Methods: A pilot study of Digital Integrated Dramatherapy, recruiting women from the digital community "Parole Fertili," undergoing assisted reproductive technology. On the basis of a previous blended experience, a program based on remote sessions was conducted on a dedicated platform. Results: A total of 22 women participated in the same intervention in three groups. Participants assessed the feasibility and utility of the method, both in the synchronous and asynchronous phases. The group had a fundamental role: the participants were supportive, and therapeutic benefits were due to strengthening and resilience obtained through a dialogue with other women. Using metaphors, the participants could move from the narration of the Assisted Reproductive Technology pathway to creative and corporeal expression. Conclusion: The study showed that a group based on Digital Integrated Dramatherapy might help women face very difficult emotions by promoting creativity and internal resources.

Narrative Medicine: A Digital Diary in the Management of Bone and Soft Tissue Sarcoma Patients. Preliminary Results of a Multidisciplinary Pilot Study.

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: 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: 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: The preliminary results supported the need to integrate patients' narratives with clinical data and encourage further research.

Narrative medicine: feasibility of a digital narrative diary application in oncology.

OBJECTIVES: We implemented narrative medicine in clinical practice using the Digital Narrative Medicine (DNM) platform. METHODS: We conducted a preliminary, open, uncontrolled, real-life study in the oncology and radiotherapy departments of Istituto di Ricovero e Cura a Carattere Scientifico National Cancer Institute Regina Elena, Rome, Italy. We recruited adult Italian-speaking patients who then completed the DNM diary from the start of treatment. The primary endpoint was DNM feasibility; secondary endpoints were health care professionals' opinions about communication, therapeutic alliance, and information collection and patients' opinions about therapeutic alliance, awareness, and coping ability. We used open- and closed-ended questions (scores 1 to 5) and a structured interview. RESULTS: Thirty-one patients (67%) used the diary (84% women). Health care professionals' mean scores for feasibility and utility were ≥4.0. Patients' utility scores were related to health care professionals' feedback regarding the narratives. The main advantages for health care professionals were the opportunity to obtain relevant patient data and to strengthen communication and patient relationships (mean scores 4.4-5.0). Both groups strongly encouraged introduction of the diary in clinical practice. CONCLUSION: Use of the DNM in oncology patients assisted clinicians with understanding their patients experience.

[Online conversations to understand the disease and promote the doctor-patient relationship.] / Conversazioni online per comprendere la malattia e favorire il rapporto medico-paziente.

An anthropologist's approach to patient engagement is different from that of other professionals. An anthropologist is used to asking himself apparently trivial questions that help deconstruct cultural constructs. In his work, narrative medicine has a fundamental importance: it is a clinical-assistance intervention methodology that allows you «to acquire, understand, integrate the different points of view of those involved in the disease and in the treatment process¼ (Italian Health Institute). Digital technologies help integrate psychosocial components with biological and clinical ones, allowing a matching between the patient and the doctor free from the tight spaces and times of the clinic.

Glimpsing the Impact of COVID19 Lock-Down on People With Epilepsy: A Text Mining Approach.

Objectives: To describe how the recent lock-down, related to SARS-COV-II outbreak in Italy, affected People With Epilepsy (PwE), we designed a survey focused on subjective reactions. Using Natural Language Processing (NLP), we analyzed words PwE and People without Epilepsy (PwoE) chose to express their reactions. Methods: As a subset of a larger survey, we collected from both PwE (427) and PwoE (452) single words (one per subject) associated to the period of lock down. The survey was spread thanks to the efforts of Italian league against epilepsy Foundation during the days of maximum raise of the pandemic. Data were analyzed via bag of word and sentiment analysis techniques in R. Results: PwoE and PwE showed significantly different distribution in word choice (X2, p = 4.904e-13). A subset of subject used positive words to describe this period, subjects with positive feelings about the lock down were more represented in the PwE group (X2, p = 0.045). Conclusion: PwoE developed reactive stress response to the restrictions enacted during lock-down. PwE, instead, chose words expressing sadness and concern with their disease. PwE appear to internalize more the trauma of lock down. Interestingly PwE also expressed positive feelings about this period of isolation more frequently than PwoE. Our study gives interesting insights on how People with Epilepsy react to traumatic events, using methods that evidence features that do not emerge with psychometric scales.

[Application of narrative medicine in oncological clinical practice: impact on health care professional.] / Applicazione della medicina narrativa nella pratica clinica oncologica: l'impatto sull'operatore.

INTRODUCTION: Narrative medicine makes explicit the experience of disease and enhances the subjective view in the cure. In addition, the narrative approach involves personal experience and emotional resonances of the health care professional leading him to redefine the values in terms of health and disease. The IMPERO study aims to explore the personal "life experience" of health care professionals involved in studies exploring a new methodological clinical approach: the use of a digital narrative diary in collecting and integrating theme-oriented narration in clinical practice. METHODS: Qualitative study based on the interviews of three health care professionals (two oncologists and one nurse) involved in the AMENO study. The main topic of the interviews was the "perceived" and the intimate experience of each health care professional, particularly on the meaning and the role regarding their personal and professional experience while coping with patients narration. The analysis of data focuses on three aspects: a) the health care professionals' point of view using the diary as a tool for narrative-based medicine; b) the work environment as a framework for the use of the digital diary; c) the mental construction concerning the meaning of the tool and its preliminary use in clinical practice. RESULTS: The diary is appreciate as a tool for the application of narrative-based medicine; the reading/writing format is considered of high quality and suitable for clinical practice processes. The narration drives a change in the patient-health care professional relationship: the patient is valued as an "individual". An atmosphere of empathy and greater intimacy is created. The perceptions developed over the years of clinical practice, which reflect personal and professional concepts (knowledge and individual believes in illness, health, healing, etc.), influence the perception of the narrative instrument and its clinical use. The work context influences the use of the diary, limiting its potential. Narrative medicine is a way of reorganizing the criteria that contribute in defining the quality of patient care by focusing on the patient-health care professional relationship. DISCUSSION: The approach of narrative medicine must be reviewed in the light of the relational systemic theory which allows us to understand several aspects: the training in narrative medicine itself, the acquisition of professional skills by practitioners, and the organizational development of the institutions (the organizational structures but also the values and professional culture of work).

Contrast enhancement ultrasound application in focal liver lesions characterization: a retrospective study about guidelines application (SOCEUS-CEUS survey).

INTRODUCTION: The SOCEUS survey aims to evaluate how contrast-enhanced ultrasound (CEUS) is effectively used in the focal liver lesions characterization. MATERIALS AND METHODS: In the survey were involved Verona, Brescia and Trieste Radiological Centers and Arezzo and Bologna Non-radiological Centers. Inclusion criteria were liver focal lesion detection at conventional ultrasound and studied by means of CEUS, with or without CT or MRI examinations, done previous or subsequent to CEUS. RESULTS: 1069 forms were collected. Patients with benign lesions, who did not undergo any other studies, were 255/561 (45.5 %). Among patients with diagnosis of hemangioma at CEUS, those who had no other investigations were 129/267 (48.3 %). Patients with malignant lesions who had studies pre-CEUS (CT and/or MRI) were 328/508 (65 %), whereas those who had examinations post-CEUS (CT and/or MRI) were 218/508 (42.9 %). Concordance rate between CEUS and CT investigations pre- and post-CEUS was, respectively, 66 and 89 %. Concordance rate between CEUS and MRI studies pre- and post-CEUS was, respectively, 87.5 and 81.5 %. CONCLUSION: This study proves contrast-enhanced ultrasound correct application in the involved centers.