Patient Experience in Pancreas-Kidney Transplantation-A Methodological Approach Towards Innovation in an Established Program.

Simultaneous pancreas-kidney transplantation (SPKT) leads to increased survival and quality of life, and is an alternative treatment for insulin-dependent diabetes mellitus and end-stage kidney disease. Due to the particularities of this population (often with multiple comorbidities) and of the surgery (only performed in a few centers), a comprehensive analysis of patients' experience along the SPKT process is crucial to improve patient care and add value to this procedure. Therefore, we applied a systematic and iterative methodology with the participation of both patients and professional teams working together to explore and identify unmet needs and value-adding steps along the transplant patient journey at an established pancreas transplant program. Four main steps (to comprehend, to explore, to experiment and to assess) led to several interventions around three major areas: Administration and logistics, information and communication, and perceived quality of assistance. As a result, both displacements to the hospital for diagnostic purposes and the time delay involved in joining the patient waiting list for transplantation were reduced in parallel to the administrative procedures. In conclusion, the methodological implementation of key organizational changes has great impact on overall patient experience. Further quantitative analysis from the patient's perspective will consolidate our program and may add new prototype service design components.

Personalized respiratory medicine: exploring the horizon, addressing the issues. Summary of a BRN-AJRCCM workshop held in Barcelona on June 12, 2014.

This Pulmonary Perspective summarizes the content and main conclusions of an international workshop on personalized respiratory medicine coorganized by the Barcelona Respiratory Network ( www.brn.cat ) and the AJRCCM in June 2014. It discusses (1) its definition and historical, social, legal, and ethical aspects; (2) the view from different disciplines, including basic science, epidemiology, bioinformatics, and network/systems medicine; (3) the bottlenecks and opportunities identified by some currently ongoing projects; and (4) the implications for the individual, the healthcare system and the pharmaceutical industry. The authors hope that, although it is not a systematic review on the subject, this document can be a useful reference for researchers, clinicians, healthcare managers, policy-makers, and industry parties interested in personalized respiratory medicine.

[Transferable skills of healthcare professionals in providing homecare in chronically ill patients]. / Competencias transversales de los profesionales que facilitan atención domiciliaria a pacientes crónicos.

AIM: To determine the relevance level of non-technical skills of those professionals dedicated to the healthcare of patients with chronic diseases, from an analysis of home care professionals. DESIGN: Quantitative and qualitative research conducted in 2 phases: 1.st from November 2010 to March 2011 and 2.nd from December 2012 to August 2013. SETTING: Health Region of Barcelona city. PARTICIPANTS: During the 1.st phase, 30 professionals from homecare teams (3 from Primary Care and 3 from Hospitals). In 2.nd phase, 218 professionals from 50 Primary Healthcare Centres and 7 home care programmes. METHOD: Purposive sampling in was used in the1st phase, and randomized sampling in the 2.nd phase. Likert scales and focus group were used. RESULTS: A total of 19 skill categories were identified in the 1.st phase. In the 2.nd phase 3 metacategories were established: comprehensive patient-centered care, interprofessional organization, and inter-health care fields and interpersonal skills. CONCLUSIONS: It is necessary to improve and secure the professionals relationships between levels of healthcare, continuity of healthcare, biopsychosocial model and holistic attention to patients and relatives, looking at emotions, expectations, feelings, beliefs and values. It is essential to design and implement continuing training in transferable skills in every healthcare centre, through active methodologies.

Chronic Obstructive Pulmonary Disease heterogeneity: challenges for health risk assessment, stratification and management.

BACKGROUND AND HYPOTHESIS: Heterogeneity in clinical manifestations and disease progression in Chronic Obstructive Pulmonary Disease (COPD) lead to consequences for patient health risk assessment, stratification and management. Implicit with the classical "spill over" hypothesis is that COPD heterogeneity is driven by the pulmonary events of the disease. Alternatively, we hypothesized that COPD heterogeneities result from the interplay of mechanisms governing three conceptually different phenomena: 1) pulmonary disease, 2) systemic effects of COPD and 3) co-morbidity clustering, each of them with their own dynamics. OBJECTIVE AND METHOD: To explore the potential of a systems analysis of COPD heterogeneity focused on skeletal muscle dysfunction and on co-morbidity clustering aiming at generating predictive modeling with impact on patient management. To this end, strategies combining deterministic modeling and network medicine analyses of the Biobridge dataset were used to investigate the mechanisms of skeletal muscle dysfunction. An independent data driven analysis of co-morbidity clustering examining associated genes and pathways was performed using a large dataset (ICD9-CM data from Medicare, 13 million people). Finally, a targeted network analysis using the outcomes of the two approaches (skeletal muscle dysfunction and co-morbidity clustering) explored shared pathways between these phenomena. RESULTS: (1) Evidence of abnormal regulation of skeletal muscle bioenergetics and skeletal muscle remodeling showing a significant association with nitroso-redox disequilibrium was observed in COPD; (2) COPD patients presented higher risk for co-morbidity clustering than non-COPD patients increasing with ageing; and, (3) the on-going targeted network analyses suggests shared pathways between skeletal muscle dysfunction and co-morbidity clustering. CONCLUSIONS: The results indicate the high potential of a systems approach to address COPD heterogeneity. Significant knowledge gaps were identified that are relevant to shape strategies aiming at fostering 4P Medicine for patients with COPD.

[Accesibility and use of spirometry in primary care centers in Catalonia]. / Accesibilidad y utilización de la espirometría en los centros de atención primaria de Cataluña.

OBJECTIVE: Examine the accessibility and use of forced spirometry (FS) in public primary care facilities centers in Catalonia. DESIGN: Cross-sectional study using a survey. PARTICIPANTS: Three hundred sixty-six Primary Care Teams (PCT) in Catalonia. Third quarter of 2010. MEASUREMENTS: Survey with information on spirometers, training, interpretation and quality control, and the priority that the quality of spirometry had for the team. Indicators FS/100 inhabitants/year, FS/month/PCT; FS/month/10,000 inhabitants. MAIN RESULTS: Response rate: 75%. 97.5% of PCT had spirometer and made an average of 2.01 spirometries/100 inhabitants (34.68 spirometry/PCT/month). 83% have trained professionals.>50% centers perform formal training but no information is available on the quality. 70% performed some sort of calibration. Interpretation was made by the family physician in 87.3% of cases. In 68% of cases not performed any quality control of exploration. 2/3 typed data manually into the computerized medical record.>50% recognized a high priority strategies for improving the quality. CONCLUSION: Despite the accessibility of EF efforts should be made to standardize training, increasing the number of scans test and promote systematic quality control.

Impact of pandemic mobility restrictions on kidney transplant patients' experience: lessons on quality of care.

BACKGROUND: Patient perspectives on their post-operative health are acknowledged as valuable healthcare outcomes and should be scrupulously considered when designing interventions for patient-centered healthcare. Yet, following the COVID-19 lockdown and in the absence of standardized guidelines on how to best provide virtual chronic care to kidney transplant recipients, little is known about how this unique population coped and managed to comply with public health indications during confinement. METHODS: This study addresses this shortcoming by examining the experiences of patients from a tertiary hospital in Spain during the initial weeks of the lockdown decreed by the national government. Specifically, we focus our attention on the perceptions and experiences of these patients by retrieving robust qualitative and quantitative data: the former based on a thematic analysis of focus group transcripts, the latter obtained from a large-scale survey. RESULTS: Our findings identify opportunities for improvement in the quality of care and point to the provisions that might be made when facing future pandemics or lockdown-requiring situations. CONCLUSIONS: As healthcare services navigate evolving landscapes, our findings on the experience of kidney transplant recipients should enable hospital services to improve the quality of care they are able to provide to such patients during periods of restricted mobility, especially those associated with future disease emergencies, and considering that home confinement is often part of the natural course of post-operative care of these patients.

Effect of CPAP Treatment on Cardiovascular Outcomes.

INTRODUCTION: Randomized controlled trials (RCT) have not demonstrated a role for continuous positive airway pressure (CPAP) on the secondary prevention of major cardiovascular events in obstructive sleep apnea (OSA) patients. However, participants in RCTs are substantially different from real-world patients. Therefore, we aimed to assess the effect of CPAP treatment on major cardiovascular events in real-world OSA patients. METHODS: Population-based longitudinal observational study including all OSA patients with an active CPAP prescription at the beginning of 2011 in Catalonia, Spain, that terminated CPAP treatment during 2011 and did not have CPAP prescriptions between 2012-2015; and propensity-score-matched OSA patients that continued CPAP treatment until the end of 2015 or death. Adjusted hazard ratios were used to assess the association between CPAP treatment and overall and cardiovascular mortality, cardiovascular hospitalizations, or major adverse cardiovascular events (MACEs). RESULTS: 3638 CPAP terminators and 10,914 propensity-score-matched continuators were included (median age 67 [57-77] years, 71.4% male). During a median follow-up of 47.9 months CPAP continuators showed a lower risk of cardiovascular death than terminators (hazard ratio [HR]: 0.61; 95% confidence interval [CI]: 0.50-0.75) after adjusting by age, sex and key comorbidities. Similar results were found for cardiovascular hospitalizations (HR: 0.87; 95% CI: 0.76-0.99) and MACEs (HR: 0.84; 95% CI: 0.75-0.95). CONCLUSION: CPAP treatment continuation could be associated with a significantly lower risk of major cardiovascular events in real-world OSA patients. This result highlights the importance of including real-world patients in studies on OSA.

Impact of clinical and health services research projects on decision-making: a qualitative study.

BACKGROUND: This article reports on the impact assessment experience of a funding program of non-commercial clinical and health services research. The aim was to assess the level of implementation of results from a subgroup of research projects (on respiratory diseases), and to detect barriers (or facilitators) in the translation of new knowledge to informed decision-making. METHODS: A qualitative study was performed. The sample consisted of six projects on respiratory diseases funded by the Agency for Health Quality and Assessment of Catalonia between 1996 and 2004. Semi-structured interviews to key informants including researchers and healthcare decision-makers were carried out. Interviews were recorded, transcribed verbatim and analysed on an individual (key informant) and group (project) basis. In addition, the differences between achieved and expected impacts were described. RESULTS: Twenty-three semi-structured interviews were conducted. Most participants indicated changes in health services or clinical practice had resulted from research. The channels used to transfer new knowledge were mainly conventional ones, but also in less explicit ways, such as with the involvement of local scientific societies, or via debates and discussions with colleagues and local leaders. The barriers and facilitators identified were mostly organizational (in research management, and clinical and healthcare practice), although there were also some related to the nature of the research as well as personal factors. Both the expected and achieved impacts enabled the identification of the gaps between what is expected and what is truly achieved. CONCLUSIONS: In this study and according to key informants, the impact of these research projects on decision-making can be direct (the application of a finding or innovation) or indirect, contributing to a more complex change in clinical practice and healthcare organization, both having other contextual factors. The channels used to transfer this new knowledge to clinical practice are complex. Local scientific societies and the relationships between researchers and decision-makers can play a very important role. Specifically, the relationships between managers and research teams and the mutual knowledge of their activity have shown to be effective in applying research funding to practice and decision-making. Finally the facilitating factors and barriers identified by the respondents are closely related to the idiosyncrasy of the human relations between the different stakeholders involved.

mHealth Technology as a Help Tool during Breast Cancer Treatment: A Content Focus Group.

PURPOSE: To assess the usability and preferences of the contents of mHealth software developed for breast cancer patients as a tool to obtain patient-reported outcomes (PROMs), improve the patient's knowledge about the disease and its side effects, increase adherence to treatment, and facilitate communication with the doctor. INTERVENTION: an mHealth tool called the Xemio app provides side effect tracking, social calendars, and a personalized and trusted disease information platform to deliver evidence-based advice and education for breast cancer patients. METHOD: A qualitative research study using semi-structured focus groups was conducted and evaluated. This involved a group interview and a cognitive walking test using Android devices, with the participation of breast cancer survivors. RESULTS: The ability to track side effects and the availability of reliable content were the main benefits of using the application. The ease of use and the method of interaction were the primary concerns; however, all participants agreed that the application would be beneficial to users. Finally, participants expressed their expectations of being informed by their healthcare providers about the launch of the Xemio app. CONCLUSION: Participants perceived the need for reliable health information and its benefits through an mHealth app. Therefore, applications for breast cancer patients must be designed with accessibility as a key consideration.

Standardizing admission and discharge processes to improve patient flow: a cross sectional study.

BACKGROUND: The aim of this study was to evaluate how hospital capacity was managed focusing on standardizing the admission and discharge processes. METHODS: This study was set in a 900-bed university affiliated hospital of the National Health Service, near Barcelona (Spain). This is a cross-sectional study of a set of interventions which were gradually implemented between April and December 2008. Mainly, they were focused on standardizing the admission and discharge processes to improve patient flow. Primary administrative data was obtained from the 2007 and 2009 Hospital Database. Main outcome measures were median length of stay, percentage of planned discharges, number of surgery cancellations and median number of delayed emergency admissions at 8:00 am. For statistical bivariate analysis, we used a Chi-squared for linear trend for qualitative variables and a Wilcoxon signed ranks test and a Mann-Whitney test for non-normal continuous variables. RESULTS: The median patients' global length of stay was 8.56 days in 2007 and 7.93 days in 2009 (p < 0.051). The percentage of patients admitted the same day as surgery increased from 64.87% in 2007 to 86.01% in 2009 (p < 0.05). The number of cancelled interventions due to lack of beds was 216 patients in 2007 and 42 patients in 2009. The median number of planned discharges went from 43.05% in 2007 to 86.01% in 2009 (p < 0.01). The median number of emergency patients waiting for an in-hospital bed at 8:00 am was 5 patients in 2007 and 3 patients in 2009 (p < 0.01). CONCLUSIONS: In conclusion, standardization of admission and discharge processes are largely in our control. There is a significant opportunity to create important benefits for increasing bed capacity and hospital throughput.

A qualitative study of patient and carer experiences with home respiratory therapies: Long-term oxygen therapy and home mechanical ventilation.

Studies exploring the experience of patients receiving home respiratory therapies (HRT), such as long-term oxygen therapy (LTOT) and home mechanical ventilation (HMV), are still limited. This study focused on patients' and carers' experience with LTOT and HMV. An exploratory, cross-sectional qualitative study, using semi-structured focus groups, was carried out with 18 patients receiving HRT (median 71y, 78% male, 56% on both LTOT and HMV) and 6 carers (median age 67y, 67% female). Three focus groups were conducted in three regions of Portugal. Thematic analysis was performed by two independent researchers. Patients' and carers' experience was reflected in seven major topics, linked to specific time points and settings of the treatment: Initial symptoms/circumstances (n = 41), Prescription (n = 232), Implementation (n = 184), Carer involvement (n = 34), Quality of life impact (n = 301), Health care support/navigability (n = 173) and Suggestions (n = 14). Our findings demonstrate a general good perception of the HRT by patients and carers recognizing a significative quality of life impact improvement, while identifying specific points where improvements in healthcare are needed, particularly about navigability issues, articulation between the hospital, primary care and homecare teams, especially regardingprescriptionrenewal. This knowledge is crucial to promote a long-term HRT adherence and to optimize HRT delivery in line with patients' experience, needs, and values. Moreover, these key points can inform the development of a specific patient-reported experience measure (PREM) for patients on HRT, which is not currently available, and foster a more integrated respiratory care model.

Cluster Analysis of Home Mechanical Ventilation in COPD Patients: A Picture of the Real World and Its Impact on Mortality.

BACKGROUND: Treatment of chronic hypercapnic failure in COPD patients with home noninvasive ventilation (HNIV) remains unclear. AIM: To create a curated cohort of all COPD patients on HNIV in Catalonia, perform a cluster analysis, and evaluate mortality evolution. STUDY DESIGN AND METHODS: This study was a multicenter, observational study including all COPD patients on HNIV on 1st January of 2018. Patients were selected through the Catalan Health Service, and administrative and clinical data were obtained in the previous four years. Principal component analysis of mixed data and hierarchical clustering were performed to identify clusters of patients. Mortality was evaluated from 1 January 2018 until 31 December 2020. RESULTS: A total of 247 patients were enrolled. They were mostly male (78.1%), with a median (SD) age of 70.4 (9.4) years old. In 60%, 55% and 29% of patients, obesity, sleep apnea and heart failure coexisted, respectively. Cluster analysis identified four well-differentiated groups labeled for their clinical characteristics: (1) obese smokers, (2) very severe COPD, (3) sleep apnea and (4) older comorbid males. Patients belonging to Clusters (2) and (4) had a worse prognosis than patients in Clusters (1) and (3). INTERPRETATION: A high heterogeneity in the prescription of HNIV was demonstrated. Cluster analysis identifies four different groups, of which only one had COPD as the main cause of ventilation, while the other three clusters showed a predominance of other comorbidities. This leads to different survival outcomes, including an overlapping phenotype of obesity-related disease and sleep apnea with better survival.

Psychosocial, Lifestyle, and Body Weight Impact of COVID-19-Related Lockdown in a Sample of Participants with Current or Past History of Obesity in Spain.

PURPOSE: Home lockdown and isolation due to COVID-19 have been related to negative changes in mood, sleep, and eating behaviors. People with obesity are especially vulnerable to emotional eating and might be more prone to weight gain and negative outcomes during lockdown. MATERIALS AND METHODS: Individuals scheduled for an appointment at the Obesity Unit of a Tertiary Hospital between March 16 and June 21 (n=1230). An online survey was distributed on May 11. Multivariable logistic regression models and general linear models were used to assess the relationship between perceived COVID-19 threat, BS status, and outcome variables. RESULTS: Of the 603 (72.0% females, 39% aged >55 years) respondents, 223 (36.9%) were BS naïve (non-BS), 134 (22.2%) underwent BS within the two previous years (BS<2y), and 245 (40.6%) more than 2 years before (BS>2y). Participants worried about being infected by COVID-19 showed significantly larger changes in family contact (p=0.04), mood (p<0.01), sleep (p<0.01), dietary habits (p=0.05), purchases of unhealthy food (p=0.02), snacking (p=0.05), and physical activity (p=0.02). Non-BS and BS>2y participants reported greater impact of lockdown in mood (p<0.01), experienced more negative changes in dietary habits (p<0.01), and had a higher likelihood for weight gain (OR: 5.61, 95% CI: 3.0-10.46; OR: 5.45, 95% CI: 2.87-10.35, respectively) compared to BS<2y. CONCLUSIONS: COVID-19 pandemic is having a substantial negative impact in our population affected by obesity. During lockdown, people more than 2 years before BS behave like people without history of BS. Strategies addressed to prevent negative metabolic outcomes in this population are urgently needed.

The Portuguese Model of Home Respiratory Care: Healthcare Professionals' Perspective.

Patients' and carers' views regarding the Portuguese model of home respiratory care were recently described, yet the complementary perspective of healthcare professionals (HCPs) is still to be investigated. Thus, this study explored HCPs experience in the management of patients needing home respiratory therapies (HRT), and their perspective about the Portuguese model. A phenomenological descriptive study, using focus groups, was carried out with 28 HCPs (median 42 y, 68% female) with distinct backgrounds (57% pulmonologists, 29% clinical physiologists, 7% physiotherapists, 7% nurses). Three focus groups were conducted in three regions of Portugal. Thematic analysis was performed by two independent researchers. HCPs have in general a positive view about the organization of the Portuguese model of home respiratory care, which was revealed in four major topics: Prescription (number of references, n = 171), Implementation and maintenance (n = 162), Carer involvement (n = 65) and Quality of healthcare (n = 247). Improvements needed were related to patients' late referral, HRT prescription (usability of the medical electronic prescription system and renewals burden), patients' education, access to hospital care team, lack of multidisciplinary work and articulation between hospital, primary and home care teams. This study describes the perspective of HCPs about the Portuguese model of home respiratory care and identifies specific points where improvements and reflections are needed. This knowledge may be useful to decision makers improve the current healthcare model.

Longitudinal Analysis of Causes of Mortality in Continuous Positive Airway Pressure-treated Patients at the Population Level.

Rationale: Randomized controlled trials do not support a role for continuous positive airway pressure (CPAP) in preventing major cardiovascular events or mortality in patients with obstructive sleep apnea (OSA). However, these trials' setting does not apply to most CPAP-treated patients. Objectives: We aimed to assess the effect of CPAP on mortality in real-world patients. Methods: We performed a population-based longitudinal observational study including all patients with OSA prescribed CPAP during 2011 in Catalonia, Spain, and non-OSA control subjects matched (1:2) by sex, 5-year age group, and region who were followed from 2011 to 2016. Results: A total of 9,317 CPAP-treated patients with OSA and 18,370 control subjects without OSA were included (median age, 67 [57-72] years; 74% male). During a median follow-up of 5.5 years, 2,301 deaths were recorded. After adjustment by a composite of diagnosed comorbidities and previous use of healthcare resources, CPAP-treated patients showed a lower risk of death than control subjects (hazard ratio [HR], 0.67; 95% confidence interval [CI], 0.61-0.74), with the association not being statistically significant in women. Cancer-related deaths were the main drivers of this association (men: HR, 0.44; 95% CI, 0.36-0.54; women: HR, 0.44; 95% CI, 0.28-0.68). No significant associations were found for cardiovascular-related deaths. CPAP-treated women had an increased risk of respiratory-related death (HR, 2.41; 95% CI, 1.37-4.23). Conclusions: CPAP-treated patients had a lower mortality rate than control subjects. This relationship was driven by cancer-related, but not cardiovascular-related, deaths. Results suggest a role for sex when prescribing CPAP, especially considering respiratory-related deaths, and foster a debate on the relationship between OSA and cardiovascular outcomes.

Mouthpiece ventilation in neuromuscular disorders: Narrative review of technical issues important for clinical success.

In neuromuscular disorders (NMDs), nocturnal non-invasive ventilation (NIV) via a nasal mask is offered when hypercapnic respiratory failure occurs. With disease progression, nocturnal NIV needs to be extended into the daytime. Mouthpiece ventilation (MPV) is an option for daytime NIV. MPV represents a difficult task for home ventilators due to rapidly changing load conditions resulting from intermittent connections and disconnections from MPV circuit. The 252nd ENMC International Expert Workshop, held March 6th to 8th 2020 in Amsterdam, reported general guidelines for management of daytime MPV in NMDs. This report could not present all the detail regarding the technical issues important for clinical success of MPV. Based on the expert workshop discussions and the evidence from existing studies, the current narrative review aims to identify the technical issues of MPV and offers guidance via a decisional algorithm and educational figures providing relevant information that is important for successful implementation of MPV.

Mobile Health Projects in a High-Complexity Reference Hospital: Case Study.

BACKGROUND: The widespread adoption of mobile and wearable devices and apps makes it essential to assess their possible impact on the management of health and diseases. Health care providers (HCPs) find themselves faced with a new situation in their setting with the proliferation of mobile health (mHealth) intervention tests. Few studies have addressed the development of mHealth and the methodologies to manage these apps in a tertiary hospital. OBJECTIVE: The aim of this study was to evaluate the mHealth projects implemented in the Hospital Clínic of Barcelona to increase awareness of the context in which they are used and to develop policies for the development of good practice in mHealth innovation. METHODS: A prospective, descriptive cross-sectional study was conducted in a highly specialized university hospital with 850 beds for adults and a reference population of 520,000 inhabitants. A specific questionnaire was developed based on the Mobile Health 5 Dimensions European (MOHE 5D-EU) theoretical model to find mHealth projects. Apps, telemedicine, and wearable devices were included in the systematic search. For that purpose, a vertical (top-down) email-based snowball process was conducted. Data were collected from February to December 2018 by conducting personal interviews with HCPs using a structured questionnaire. RESULTS: During the study period, 45 interviews were conducted; 35 mHealth initiatives were found, with 25 targeted to patients and 10 to health professionals. Most mHealth initiatives (34/35, 97%) were related to the software field (apps and telemedicine initiatives), and one was related to wearable devices. Among the projects, 68% (24/35) were classified as medical devices or developments at the edge (developments susceptible to limitations depending on the intended use). In relation to data protection, 27 initiatives managing personal data (27/35, 77%) considered data protection legislation. Only 9% (3/35) of the initiatives had foreseen the use of interconnectivity standards. Most of the initiatives were funded by grants (14/35, 40%), sponsorships (5/35, 14%), or the hospital itself (5/35, 14%). In terms of clinical management, most projects were developed in the field of research, followed by professional tools, clinical information, and therapeutic education. Only 6 projects were involved with health care; all were led by either the industry or small and medium enterprises. CONCLUSIONS: This study helped create the design of a map of the mHealth projects conducted in our hospital that showed the stages of development of the different ongoing projects. This will allow monitoring of mHealth projects and construction of tools to reinforce areas with detected deficiencies. Our theoretical approach using a modified MOHE 5D-EU model was found to be useful for analyzing the characteristics of mHealth projects.

Experiences and real life management of insulin pump therapy in adults with type 1 diabetes.

OBJECTIVE: There is scarce information regarding the performance of a specific, structured education program addressed to patients with type 1 diabetes (T1D) using continuous subcutaneous insulin infusion (CSII) including both routine use of the therapy and patient experience evaluation. We aimed to assess the routine use of CSII and patient's experience and satisfaction regarding a specific structured patient self-management education and care program. METHODS: A retrospective, observational, cross-sectional study collecting CSII routine use downloaded data. Patient experience and satisfaction were evaluated using an anonymous online survey covering different aspects of CSII self-management education and care program. RESULTS: 380 T1D subjects were included (aged 45.3±12.17 years, 62.1% women, diabetes duration 27.8±10.3 years, 9.7±4.7 years on CSII, HbA1c 7.7+1.0%; 61.0±7.9mmol/mol). Participants with HbA1c≤7.5% (58mmol/mol, n=178) did more SMBGs per day (4.4±2.1 vs. 3.9±1.9); used more boluses (5.0±1.8 vs. 4.5±2.0); the percentage of insulin given as bolus was higher (50.1±12.8 vs. 44.9±13.2%); the night bolus wizard (BW) high glucose target was lower (125.9±4.4 vs. 130.5±12.8mg/dl) and time on CSII therapy was shorter (8.9±4.6 vs. 10.3±4.6 years. p<0.05 all comparisons). More SMBG/day, shorter duration of CSII treatment, a lower BW low glucose target at night, a lower BW high glucose target at night, total insulin dose per day and total number of carbohydrates per day were related with better HbA1c levels. 60% of 373 patients answered the questionnaire. The response to the different aspects of the educational program was homogeneously highly satisfactory. Seventy-seven percent of patients scored the program as very useful. Ninety-three percent of CSII users would not return to their previous insulin treatment. CONCLUSIONS: The analysis of routine clinical use of CSII by T1D patients demonstrates that glucose control may be associated with some pump usage and adherence parameters. The overall user experience and satisfaction with our CSII self-management education and care program was remarkably favorable.