Background Chronic pain (CP) and its management are critical issues in the care pathway of patients with breast cancer. Considering the complexity of CP experience in cancer, the international scientific community has advocated identifying cutting-edge approaches for CP management. Recent advances in the field of health technology enable the adoption of a novel approach to care management by developing integrated ecosystems and mobile health apps. Objective The primary end point of this pilot study is to evaluate patients’ usability experience at 3 months of a new digital and integrated technological ecosystem, PainRELife, for CP in a sample of patients with breast cancer. The PainRELife ecosystem is composed of 3 main technological assets integrated into a single digital ecosystem: Fast Healthcare Interoperability Resources–based cloud platform (Nu platform) that enables care pathway definition and data collection; a big data infrastructure connected to the Fast Healthcare Interoperability Resources server that analyzes data and implements dynamic dashboards for aggregate data visualization; and an ecosystem of personalized applications for patient-reported outcomes collection, digital delivery of interventions and tailored information, and decision support of patients and caregivers (PainRELife app). Methods This is an observational, prospective pilot study. Twenty patients with early breast cancer and chronic pain will be enrolled at the European Institute of Oncology at the Division of Medical Senology and the Division of Pain Therapy and Palliative Care. Each patient will use the PainRELife mobile app for 3 months, during which data extracted from the questionnaires will be sent to the Nu Platform that health care professionals will manage. This pilot study is nested in a large-scale project named “PainRELife,” which aims to develop a cloud technology platform to interoperate with institutional systems and patients' devices to collect integrated health care data. The study received approval from the Ethical Committee of the European Cancer Institute in December 2021 (number R1597/21-IEO 1701). Results The recruitment process started in May 2022 and ended in October 2022. Conclusions The new integrated technological ecosystems might be considered an encouraging affordance to enhance a patient-centered approach to managing patients with cancer. This pilot study will inform about which features the health technological ecosystems should have to be used by cancer patients to manage CP. International Registered Report Identifier (IRRID) DERR1-10.2196/41216
Objective: To explore meanings, perspectives and points of view of the subjective experience of paediatric patients with headache (PPwH) and create a first-person narrative for clinical practice. Methods: We conducted a qualitative, narrative research study with PPwH, 11-17 years old. Data were collected through narratives interviews and a twofold narrative analysis was performed: a narrative and a thematic analysis. Results: Twenty-three patients (14 girls; mean age 14.5; median duration of illness of 5.8 years) were recruited. Through narrative analysis and close reading, narratives revealed different ways to organize illness experience: PPwH can use 1) narrative sequences of recurrent events in order a) to describe the continuing living-through of the experience of headache, b) to define operative script or c) to characterize the illness experience generally as a "controlled" routine; or 2) a storied account of events, with well-defined characters, plot and evaluation of contingency and correlation between events to express a personal point of view and a moral standpoint about the illness experience. Through thematic analysis 5 main themes and 22 subthemes about the significance of being a PPwH emerged: a) disease dimension (description of pain), b) illness dimension, c) sickness, d) causality, e) coping and f) future perception. Then, a first-person narrative story was created as a tool enabling reflection and conversation during clinical consultation. Conclusions: Results suggest that promoting narrative dialogue can be an opportunity for the neurologist: the prototypical narrative developed from story analysis might be a tool to apply for the narrative-based medicine in the clinical setting.
BACKGROUND Recent advances in the field of information and communication technology enable the adoption of a novel and challenging approach to care management in the oncological domain by developing integrated ecosystems and health mobile applications. OBJECTIVE The primary endpoint of this pilot study is to evaluate patients’ usability experience at 3-months of a new digital and integrated technological ecosystem (composed of a platform in which patient health data are stored and its mobile application for care monitoring and momentary ecological assessments) for chronic pain in a sample of breast cancer patients. METHODS This is an observational, prospective pilot study. Twenty patients with early breast cancer and chronic pain will be enrolled. Each patient will use the PainRELife mobile application for 3 months, during which data extracted from the questionnaires will be sent to the Nu Platform that healthcare professionals will manage. This pilot study is nested in a large-scale project named “PainRELife" which aims to develop a cloud technology platform able to inter-operate with institutional systems and patients' devices to collect integrated healthcare data. The study received approval from the Ethical Committee of the European Cancer Institute in December 2021 (n. R1597/21-IEO 1701). RESULTS The study is recruiting, and data collection is expected to be completed in September 2022. CONCLUSIONS The new integrated technological ecosystems might be considered an encouraging affordance to enhance a patient-centered approach to managing cancer patients. This pilot study will inform about which features the health technological ecosystems should have to be used by cancer patients to manage chronic pain.
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