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La valeur en sante, consistant a produire de meilleurs resultats tout en maitrisant les couts, necessite d’etablir des mesures normees des resultats, prenant en compte ce qui importe aux patients. Le but etait de construire ce type de questionnaire pour le parcours de soins des patients atteint d’un cancer du pancreas. Methodologie Un groupe de travail multidisciplinaire (GTM), associant des patients a fait une revue systematique des resultats utilises dans les essais cliniques a partir de clinicaltrials.gov., et a selectionne les plus pertinents. Un comite international multidisciplinaire associant des patients a valide par methode Delphi le questionnaire. Resultats 570 etudes cliniques ont ete selectionnees et 3370 parametres ont ete repertories (cliniques = CROM, et de qualite de vie = PROM). De janvier 2018 a juin 2018, parmi ces parametres, le GTM a propose une liste de 102 parametres (92 CROM et 10 PROM) au comite international. Un ensemble de 78 variables a ete retenu apres les 4 etapes du vote Delphi pour constituer le questionnaire final incluant des PROM par l’utilisation de « Fact-Hep ». Conclusions Pour la premiere fois, un questionnaire standardise concernant le cancer du pancreas, axes sur le patient, a ete mis etabli, permettant desormais son deploiement.

BACKGROUND: Global health systems are shifting toward value-based health care to improve patient outcomes in the face of rising health care costs. The challenge is to identify standardized outcome measurements that allow optimal quality-of-care monitoring and comparison to optimize medical practices and patient pathways. A common outcomes definition is required, including medical results (Clinical Reported Outcomes Measurements [CROMs]) and quality-of-life components that matter most to patients (Patient-Reported Outcomes Measurements [PROMs]), which are particularly important for severe pathologies with short life expectancy such as pancreatic cancer. This study aimed to create standardized metrics that could be used for outcomes analysis of pancreatic cancer care. METHODS: A multidisciplinary working group (WG) was assembled. A systematic review was performed to collect the most used outcomes in clinical studies of pancreatic cancers. The study reviewed 570 studies published in the last 10 years. From these studies, 3370 outcomes, including CROMs, and PROMs, were listed and prioritized. The WG reached a consensus on key outcomes, proposed groupings for CROMs and PROMs, identified existing questionnaires that could be used for PROMs collection, and set the timeline for data collection. To refine and validate the final outcomes set, an international external committee completed a Delphi process (two rounds for both CROMS and PROMs). RESULTS: After the systematic literature review, the WG selected 102 outcomes (92 CROMs and 10 PROMs) for submission to the international Delphi vote committee. The committee retrained 89 outcomes (78 CROMs and 11 PROMs). For the PROMs, the WG and the international external committee chose a validated questionnaire, the Functional Assessment of Cancer Therapy-Hepatobiliary, which covers all of the 11 selected PROMs. CONCLUSIONS: A standardized set of outcome measures that need to be validated through international health outcome comparisons and quality-of-care assessments was built. Pilot projects are underway to test and optimize the approach in real-life conditions.

Summary Objective Reducing the time required for diagnosis is one of the major challenges to improving and accelerating the management of patients. The aim of this work is to describe an organizational innovation in the management of patients with hepatobiliary or pancreatic diseases, and to report the initial results. Materials and methods A multidisciplinary and multi-professional working group designed and instituted a patient-centered organizational system that optimizes the investigation of liver and pancreatic diseases, in order to achieve diagnosis in one day. From January 2017 to June 2017, all patients referred for consultation for hepatobiliary or pancreatic pathology were included in this new management pathway. Data were collected prospectively in a standardized form. Results Fifty-six patients with hepatobiliary or pancreatic disease were evaluated in the program during dedicated slots over a total of 20 days. Of these, four patients underwent evaluation in the program twice. The average number of patient slots in the program was three per day (range: 1–5). An additional computed tomography (CT) and/or magnetic resonance imaging (MRI) was required in 23 (41.7%) of the visits. These imaging studies were performed the same day, including nine patients who required both types of imaging (16.7% of cases). “One-day diagnosis” established an accurate diagnosis by the end of the day in 49 patient encounters (81.7%). Overall assessment of this organization was considered excellent by 46 (83%) of patients. Conclusion An organizational innovation has made it possible to effectively diagnose hepatobiliary or pancreatic pathology within one day in the majority of cases, with good patient satisfaction. It is now necessary to evaluate the medico-economic aspect of this organization, and more generally to develop a methodology for multidimensional evaluation of organizational innovations.