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Background and AimsIn oncology, there is increasing talk of personalized treatment and shared decision-making (SDM), especially when multiple treatment options are available with different outcomes depending on patient preference. The present study aimed to define the set of main dimensions and relative tools to assess the Value brought to patients from a Breast Cancer's Clinical pathway structured according to a dynamic SDM framework.MethodsStarting from our previous systematic review of the literature, a deep search of the main evidence-based and already validated questionnaires was carried out. In the second phase, to corroborate this grid, a Delphi survey was conducted to assess each questionnaire identified for each dimension, against the following seven value-based criteria: Clinical Benefit, Safety, Care Team Well Being, Patient Reported Outcomes Measures, Green Oncology, Impact on Health Budget, and Genomic Profile.ResultsThe resulting 7-dimension questionnaire is composed of 72 questions. Of these, some quantitatively and objectively assess the evolution of the patient's disease state, whereas others aim to ask patients about their active involvement in decisions affecting them and to investigate whether they were free to explore their preferences. Furthermore, to frame the analyzed phenomenon at the right time, for each questionnaire section, the specific, evidence-based timing of administration is indicated.ConclusionThe resulting questionnaire is validated in its entirety and it is composed of a set of questions and relative time point for data collections to assess the Value brought to patients undertaking a Breast Cancer's Clinical pathway, structured according to a dynamic SDM framework. It constitutes a quantitative instrument to integrate patient centeredness with a personalized perspective in the care management of women with breast cancer.

Objective: To analyze the research status of clinical governance (CG); the most productive authors, countries and organizations; connections among research themes. Methods: We used a ‘funnel model’, consisting of 3 layers describing various CG domains and settings. We retrieved bibliometric data from 1998 to 2021 from the Scopus database. Text mining, visual analysis, descriptive statistics and data visualization were performed. Citation bursts were detected. Results: The total number of studies was 2429. On a global scale, there is a swinging trend in publications, with four peaks detected (2000, 2009, 2013, 2021). Citation burst keywords include: “national health service”, “medical audit”, “psychological aspect”, “quality improvement” and “surveys and questionnaires”. UK is the most productive and cited country. The most active organizations were in the UK, Australia, USA, Italy and Iran. The most productive journals and authors were identified. The most frequent keywords identified were ‘health care quality’, ‘clinical governance’, ‘organization and management’ and ‘medical audit’. Research trends for each CG domain and setting type were reported. Conclusion: By using scientometric methodology, we created a thorough scientific picture on CG, including the mapping of pivotal concepts as a function of time.

Audit and Feedback (A&F) is an effective multidimensional strategy for improving the quality of care. The optimal methods for its implementation remain unclear. This study aimed to map the state of art of A&F strategies in the hospitals involved in a time-dependent emergency network. For these purposes, a structured questionnaire was defined and discussed within the research group. This consists of 29 questions in three sections: (1) characteristics of the structure, (2) internal feedback systems, and (3) external feedback systems. All structures involved in the network were invited to participate in the e-survey by indicating a Health Management representative and a clinical representative for the Cardiovascular (CaV) and/or for the Cerebrovascular area (CeV). Of 20 structures invited, a total of 13 (65%) responded to the survey, 11 for the CaV area and 8 for the CeV area. A total of 10 of 11 (91%) facilities for the CaV area and 8/11 (75%) for the CeV area reported that they perform A&F activities. All facilities perform at least one of the activities defined as “assimilating A&F procedures.” The most frequent is the presentation and discussion of clinical cases (82% CaV and 88% CeV) and the least is the identification of responsible for improvement actions (45% CaV and 38% CeV). In 4/10 (40%) facilities for the CaV area and 4/8 (50%) for the CEV area, corrective actions are suggested or planned when the feedback is returned. These results confirm the need to define, in a synergistic way with the relevant stakeholders, an effective and agreed A&F intervention to improve the level of implementation of A&F strategies.

Objective: Respiratory insufficiency is a major complication of Duchenne muscular dystrophy (DMD). Its progression shows considerable interindividual variability, which has been less thoroughly characterized and understood than in skeletal muscle. We collected pulmonary function testing (PFT) data from a large retrospective cohort followed at Centers collaborating in the Italian DMD Network. Furthermore, we analyzed PFT associations with different DMD mutation types, and with genetic variants in SPP1, LTBP4, CD40, and ACTN3, known to modify skeletal muscle weakness in DMD. Genetic association findings were independently validated in the Cooperative International Neuromuscular Research Group Duchenne Natural History Study (CINRG-DNHS). Methods and Results: Generalized estimating equation analysis of 1852 PFTs from 327 Italian DMD patients, over an average follow-up time of 4.5 years, estimated that forced vital capacity (FVC) declined yearly by −4.2%, forced expiratory volume in 1 sec by −5.0%, and peak expiratory flow (PEF) by −2.9%. Glucocorticoid (GC) treatment was associated with higher values of all PFT measures (approximately + 15% across disease stages). Mutations situated 3’ of DMD intron 44, thus predicted to alter the expression of short dystrophin isoforms, were associated with lower (approximately −6%) PFT values, a finding independently validated in the CINRG-DNHS. Deletions amenable to skipping of exon 51 and 53 were independently associated with worse PFT outcomes. A meta-analysis of the two cohorts identified detrimental effects of SPP1 rs28357094 and CD40 rs1883832 minor alleles on both FVC and PEF. Interpretation: These findings support GC efficacy in delaying respiratory insufficiency, and will be useful for the design and interpretation of clinical trials focused on respiratory endpoints in DMD.