Design organization and clinical processes around patient characteristics: Evidence from a multiple case study of Hemophilia.

Background: There is growing evidence of the relevance of designing organization of care around patient characteristics; this is especially true in the case of complex chronic diseases.Purpose: The goal of the paper - that focuses on the analysis of the clinical condition hemophilia in three different centers - is to address two different research questions:1. How can we define, within the same clinical condition, different patient profiles homogeneous in terms of intensity of service required (e.g. number of visits or diagnostics)? 2. What are the conditions to re-organize care around these patient profiles in a multidisciplinary and coordinated manner?Research design: The authors have used a multiple case study approach combining both qualitative and quantitative methodologies; in particularly the semi-structured interviews and the direct observation were aimed to map the process in order to come up with an estimate of the cost of the full cycle of care.Study sample: The research methodology has been applied consistently in three different centers. The selection of the structures has been based on two main different criteria: (i) high standards regarding both organizational and clinical aspects and (ii) willingness from management, nurses and physicians to provide data.Results: The study clearly shows that different patient profiles - within the same clinical condition - trigger a different set of diagnostic and therapeutic activities. It is, thus, important considering patient characteristics in the development and implementation of clinical pathways and this will imply relevant differences in terms of organizational and economic impact.Conclusions: These process-based analyses are very much critical especially if we want to move to a bundled and integrated payment system but, as shown by this study itself, require a lot of time and efforts since our healthcare information systems are still fragmented and vertically designed.

Definition of a tool to assess shared decision-making (SDM) on women with breast cancer: A value-based approach.

Background and Aims: In 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. Methods: Starting 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. Results: The 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. Conclusion: The 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.

Heart Valve Critical Pathway and Heart Valve Clinic: Novel Benchmarks for Modern Management of Valvular Heart Disease.

The growing burden of valvular heart disease in Western countries represents a challenge for the daily clinical practice, especially in the light of the ever-increasing number of therapeutic options. The Euro Heart Survey showed that, among elderly subjects with severe, symptomatic valve dysfunction, surgery is denied for 33% of patients with aortic stenosis and for 50% of patients with mitral regurgitation. Current management (from diagnosis to follow-up) is often fragmented in multiple-sometimes unnecessary-steps. Such a "patchy" approach may translate into a suboptimal management, especially in the geriatric population. New healthcare models exist that can coordinate care, reduce fragmentation, limit costs and, ultimately, improve outcomes: the clinical pathways.

Defining needs and goals of post-ICU care for trauma patients: preliminary study.

BACKGROUND: The aim of this study was to assess the long-term physical and psychological disabilities and their economic impact in severe trauma survivors. METHODS: Adult patients with Injury Severity Score >15 and Abbreviated Injury Scale ≤3 admitted to the ICU of a Level 1 trauma centre in the Lazio Region and discharged alive from hospital underwent a structured interview 12-24 months after the event. Self-reported somatic symptoms, autonomy, anxiety and depression were evaluated using a Likert-type Scale, Barthel Index and Hospital Anxiety and Depression Score (HADS), respectively. Patients' working and economic status were also investigated. RESULTS: A total of 32/58 patients matching the inclusion criteria were included in the final analysis. Eighteen patients (56%) reported at least a partial restriction in daily activities. Most common symptoms included muscle or joint pain, fatigue, and headache. All patients were receiving rehabilitation 1-2 years after the event. Fifty-eight percent of the patients spent more than €3600/year from their family budget for rehabilitation and medical care, however only 25% were receiving financial support from regional social services and 44% were unemployed at the time of the interview. Thirty patients (94%) had HADS Depression Score≥11. CONCLUSION: Survivors of severe trauma in our cohort had limited autonomy and need long-term rehabilitation. Most of them rely on private healthcare services with a significant financial impact on their family budget. Almost all patients had moderate to severe depression. Future post-ICU counseling services should facilitate access to rehabilitation and psychological support for these patients.

How to achieve optimal organization of primary care service delivery at system level: lessons from Europe.

OBJECTIVE: To measure the relative efficiency of primary care (PC) in turning their structures into services delivery and turning their services delivery into quality outcomes. DESIGN: Cross-sectional study based on the dataset of the Primary Healthcare Activity Monitor for Europe project. Two Data Envelopment ANALYSIS: models were run to compare the relative technical efficiency. A sensitivity analysis of the resulting efficiency scores was performed. SETTING: PC systems in 22 European countries in 2009/2010. MAIN OUTCOME MEASURES: Model 1 included data on PC governance, workforce development and economic conditions as inputs and access, coordination, continuity and comprehensiveness of care as outputs. Model 2 included the previous process dimensions as inputs and quality indicators as outputs. RESULTS: There is relatively reasonable efficiency in all countries at delivering as many as possible PC processes at a given level of PC structure. It is particularly important to invest in economic conditions to achieve an efficient structure-process balance. Only five countries have fully efficient PC systems in turning their services delivery into high quality outcomes, using a similar combination of access, continuity and comprehensiveness, although they differ on the adoption of coordination of services. There is a large variation in efficiency levels obtained by countries with inefficient PC in turning their services delivery into quality outcomes. CONCLUSIONS: Maximizing the individual functions of PC without taking into account the coherence within the health-care system is not sufficient from a policymaker's point of view when aiming to achieve efficiency.