Value of Including the Children's Experience for Improving Their Rights During Hospitalization: Protocol for the VoiCEs Project.

BACKGROUND: Users' feedback is a key asset for organizations that want to improve their services. Studying how organizations are enabling their users to participate in evaluation activities is particularly important, especially when there are vulnerable or disadvantaged people, and the services to be evaluated can be life-changing. This is the case in the coassessment by pediatric patients experiencing hospital stay. The international literature reports a few attempts and several challenges in systematically collecting and using the pediatric patient experience with respect to hospitalization, to undertake quality improvement actions. OBJECTIVE: This paper describes the research protocol of a European project intended to develop and implement a systematic pediatric patient-reported experience measures (PREMs) observatory that will be shared by 4 European children's hospitals in Finland, Italy, Latvia, and the Netherlands. METHODS: The VoiCEs (Value of including the Children's Experience for improving their rightS during hospitalization) project uses a participatory action research approach, based on a mixture of qualitative and quantitative methods. It consists of 6 different phases, including a literature review, an analysis of the previous experiences of pediatric PREMs reported by project partners, a Delphi process, a cycle of focus groups or in-depth interviews with children and their caregivers, a series of workshops with interactive working groups, and a cross-sectional observational survey. The project guarantees the direct participation of children and adolescents in the development and implementation phases of the project. RESULTS: The expected results are (1) a deeper knowledge of published methodologies and tools on collecting and reporting pediatric patients' voice; (2) lessons learnt from the analysis of previous experiences of pediatric PREMs; a consensus reached through a participatory process (3) among experts, (4) pediatric patients and caregivers about a standard set of measures for the evaluation of hospitalization by patients; (5) the implementation of a European observatory on pediatric PREMs; and (6) the collection and comparative reporting of the pediatric patients' voice. In addition, the project is aimed at studying and proposing innovative methodologies and tools for capturing the pediatric patients' feedback directly, avoiding the intermediation of parents/guardians. CONCLUSIONS: Over the last decade, the collection and use of PREMs have gained importance as a research field. Children and adolescents' perspectives have also been increasingly taken into consideration. However, to date, there are limited experiences regarding the continuous and systematic collection and use of pediatric PREMs data for implementing timely improvement actions. In this perspective, the VoiCEs project provides room for innovation, by contributing to the creation of an international, continuous, and systematic pediatric PREMs observatory that can be joined by other children's hospitals or hospitals with pediatric patients, and foresees the return of usable and actionable data in benchmarking. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/42804.

Benchmarking experience to improve paediatric healthcare: listening to the voices of families from two European Children's University Hospitals.

BACKGROUND: Patient Reported Experience Measures (PREMs) are recognized as an important indicator of high quality care and person-centeredness. PREMs are increasingly adopted for paediatric care, but there is little published evidence on how to administer, collect, and report paediatric PREMs at scale. METHODS: This paper describes the development of a PREMs questionnaire and administration system for the Meyer Children's University Hospital in Florence (Meyer) and the Children's Clinical University Hospital in Riga (CCUH). The system continuously recruits participants into the electronic administration model, with surveys completed by caregivers or adolescents at their convenience, post-discharge. We analyse 1661 responses from Meyer and 6585 from CCUH, collected from 1st December 2018 to 21st January 2020. Quantitative and qualitative experience analyses are included, using Pearson chi-square tests, Fisher's exact tests and narrative evidence from free text responses. RESULTS: The large populations reached in both countries suggest the continuous, digital collection of paediatric PREMs described is feasible for collecting paediatric PREMs at scale. Overall response rates were 59% in Meyer and 45% in CCUH. There was very low variation in mean scores between the hospitals, with greater clustering of Likert scores around the mean in CCUH and a wider spread in Meyer for a number of items. The significant majority of responses represent the carers' point of view or the perspective of children and adolescents expressed through proxy reporting by carers. CONCLUSIONS: Very similar reported scores may reflect broadly shared preferences among children, adolescents and carers in the two countries, and the ability of both hospitals in this study to meet their expectations. The model has several interesting features: inclusion of a narrative element; electronic administration and completion after discharge from hospital, with high completion rates and easy data management; access for staff and researchers through an online platform, with real time analysis and visualization; dual implementation in two sites in different settings, with comparison and shared learning. These bring new opportunities for the utilization of PREMs for more person-centered and better quality care, although further research is needed in order to access direct reporting by children and adolescents.

Criteria for referral of pediatric SARS-CoV-2 infection: a real-life experience in the pandemic era.

A practical guidance on the management of children with COVID-19 to insure homogeneous criteria for referral to a higher-level facility, according to the disease severity, is pivotal in the pandemic era. A panel of experts in pediatric infectious diseases and intensive care at the tertiary-care Meyer Children's University Hospital, Florence, Italy, issued a practical document shared with Tuscany hospitals. The rationale was to target the referral for those children at risk of requiring an intensive support, since the above mentioned hospital has the pediatric intensive care unit. Overall, 378 patients between 0 and 19 years of age were diagnosed with COVID-19 infection in the Tuscany region with 24 (6.3%) hospitalizations. Only three children were centralized to Meyer Children's University Hospital according to reported criteria. Considering that appropriate referral criteria have been associated with reduced mortality in other conditions, our document might be useful to improve outcomes of children with COVID-19.

Pattern of domestic violence from 2011 to 2015 in Beira, Mozambique.

BACKGROUND: Violence against women represents a violation of a fundamental human right and is a significant cause of death and disability worldwide. In developing countries, this issue is particularly dramatic and in sub-Saharan Africa were reached 65% of women reporting domestic violence. OBJECTIVE: In this study, we assessed the burden and pattern of domestic violence registered at Beira Central Hospital, Mozambique from 2011 to 2015. METHODS: We performed a descriptive analysis of data collected at the CHB Legal Medicine Service. RESULTS: In five years, are recorded a total amount of 1,491 admissions for domestic violence of which 1307 were females. About 80% of all female cases are represented by the 11-40 age range and, in almost 90% the aggressor was the current or past partner. More than 75% were cases of repeated violence and in more than 60% there were minors attending the phenomenon. CONCLUSION: It is crucial to act immediately and with a multi-disciplinary approach in order to fight domestic violence, especially against women due to its dramatic consequences as isolation, inability to work, loss of wages, lack of participation in regular activities and limited ability to care for themselves and their children.

Comorbidity between headache and epilepsy in a pediatric headache center.

The purpose of this study was to analyse the comorbidity between headache and epilepsy in a large series of children with headache (1,795). Fifty-six cases (3.1%) suffered from idiopathic headache and idiopathic or cryptogenic epilepsy or unprovoked seizures. There was a strong association between migraine and epilepsy: in migraineurs (46/56) the risk of epilepsy was 3.2 times higher when compared with tension-type headache, without significant difference between migraine with and without aura (P = 0.89); children with epilepsy had a 4.5-fold increased risk of developing migraine than tension-type headache. In cases with comorbidity, focal epilepsies prevailed (43/56, 76.8%). Migraineurs affected by focal epilepsies (36/56) had a three times higher risk of having a cryptogenic epilepsy (27/36, 75%) than an idiopathic epilepsy (9/36, 25%) (P = 0.003). In migraine with aura, epilepsy preceded migraine in 71% of cases. Photosensitivity (7/56, 12.5%) and positive family history for epilepsy (22/56, 39%) were frequent in cases with comorbidity.