2023-12-18 16:40:17
Monitor the quality of life during the oncology process. This is the objective of a multicenter telemonitoring project to measure the emotional toxicity of therapies and achieve the objective established by the 2016 National Chronicity Plan of integrating the care plan with the existential project: for the first time, listening and The analysis of the impact of therapies integrates Proms (Patient-Reported Outcomes Measures) with narrative methodologies. It is called Pemoral – Person Based Care (PbC) path in the treatment of breast cancer treated with oral therapies, and involves 4 centers in different areas of Italy: Gemelli University Polyclinic Foundation in Rome; Sacro Cuore Don Calabria Irccs Hospital in Negrar di Valpolicella (Verona); Annunziata hospital unit of the Cosenza hospital company; Carlo Poma hospital in Mantua. The project – we read in a note – is carried out with the non-conditioning contribution of Novartis Farma Spa and the patronage of Simen, Italian Society of Narrative Medicine.
Pemoral – the note reports – is a digital narrative medicine path, developed by the Innovative SME Dnm Società Benefit Srl on the DnmLab platform, already used in various studies conducted since 2017 at the Ifo in Rome, with patients undergoing radiotherapy and chemotherapy (Ameno and Amenart) and sarcoma patients (Amenas).
“Treating the disease and treating the person experiencing the disease are two very different things – explains Stefania Polvani, president of Simen – narrative medicine was born precisely from the recognition of a common need between health professionals and people are faced with an illness experience. With empathy and communication skills, which can be taught by experts and therefore learned by all healthcare professionals, it is possible to improve both parts of the relationship.”
The coordinator of the Pemoral project, Dr. Alessandra Fabi, of the Policlinico Gemelli Foundation, who promoted the initiative, recalls the importance of the subjective narration of the quality of life and the experience of therapies and illness. “With the digital narrative diary I re-evaluated my concept of chemotherapy and the integration of the effects linked to toxicity in everyone’s experience – Fabi underlines – discovering an often normal everyday life, full of recreational activities. I understood how toxicity has a different weight depending on the specific profession or activity. The Proms photograph a specific moment, but they tell us nothing about the duration of the symptom and the impact of that symptom on the subjective perception of quality of life.”
The project enhances digital technologies – details the note – with the aim of offering a concrete tool to apply the recommendations of the Guidelines on narrative medicine of the ISS, according to which “narration is the fundamental tool for acquiring, understanding and integrating the different points of view of those involved in the disease and in the treatment process. The aim is the shared construction of a personalized treatment path (care history)”. The DnmLab platform allows you to collect patients’ narratives within a digital narrative diary, totally protected from the point of view of privacy and security of health data. Through the diary, patients with breast cancer treated with oral therapies, involved in the Pemoral project, will be able to narrate their experiences of the disease and the treatment process.
The path – concludes the note – aims to integrate quantitative data on the expected and detected toxicity of therapies with qualitative data relating to the person’s experience of the disease. The narrative path in fact aims to overcome some limits of standardized quantitative surveys, to allow a biopsycho-social personalization of the treatment plan. Quality of life questionnaires help to identify problems, but do not reveal the positive resources that people develop during an oncology journey and which can be enhanced by the treatment team.
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