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result(s) for
"Hadjipanayis, Adamos"
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Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus
by
Hadjipanayis, Adamos
,
Antoniadou, Victoria
in
Analysis
,
Collaboration
,
Continuing Medical Education
2023
Background
Rare diseases are a particular field of public health that is characterized by scattered, often insufficient knowledge and infrastructure. The scarcity of specialized knowledge often forces clinicians and patients to an incomplete picture of the diseases and their associated risks. Effective person-centred networks appear promising for solving such real world and life-defining problems by purposely sourcing expert knowledge that is geographically-dispersed. The design and implementation of the RARE-e-CONNECT network technology is described. The project was funded to create collaborative spaces for the development of international partnerships in Cyprus’ healthcare, promoting the dissemination of expert knowledge on rare diseases while saving resources through teleconsultation. Parameters that matter for patients, providers and policy-makers through the RARE-e-CONNECT experience were evaluated through a participatory mixed-method approach, consisting of (1) a needs assessment survey with 27 patients/families and 26 healthcare professionals at the two referral hospitals for the diagnosis and management of rare diseases in Cyprus; (2) interviews with 40 patients, families and patient representatives, as well as 37 clinicians and laboratory scientists, including national ERN coordinators/members; (3) activity metrics from 210 healthcare professionals and 251 patients/families/patient representatives who participated on the platform at the time of the research.
Results
Our results indicate usage and intention by both healthcare professionals and patients/families to openly provide decentralized specialized information for raising suspicion amongst clinicians to facilitate the necessary referrals, as well as peer to peer psychosocial support to help cope with the everyday challenges of living with the disease. User behavior was largely affected by the prevailing social norm favoring individual practice, as well as missing policies for telemedicine and shared care. This article discusses how telehealth is inextricably linked to social, cultural, organizational, technological and policy factors affecting uptake.
Conclusions
We argue that collective intelligence tools need to be formally considered and work hand in hand with national and European policies/regulatory frameworks to promote proactiveness amongst the healthcare community with regard to the timely diagnosis of rare diseases and the facilitation of patients’ pathway to specialists. Collaborative channels between countries need to be established to source collective intelligence on complex cases and save resources through teleconsultation/telementoring.
Journal Article
Off-label use of medicines in neonates, infants, children, and adolescents: a joint policy statement by the European Academy of Paediatrics and the European society for Developmental Perinatal and Pediatric Pharmacology
2020
Health-care professionals who prescribe medicines have the professional duty to choose medicines that are in the best interest of their individual patient, irrespective if that patient is an adult or a child. However, the availability of medicines with an appropriate label for pediatric use is lagging behind those for adults, and even available pediatric drugs are sometimes not suitable to administer to children. Consequently, health-care professionals often have no other option than to prescribe off-label medicines to children. An important reason for use of off-label medicines is to improve access to (innovative) treatments or to address medical needs and preferences of patients, especially when no other options are available. However, off-label use of medicines is in general not supported by the same level of evidence as medicines licensed for pediatric use. This may result in increased uncertainty on efficacy as well as the risk for toxicity and other side effects. In addition, liability may also be of concern, counterbalanced by professional guidelines.Conclusion: The purpose of this joint EAP/ESDPPP policy statement is to offer guidance for HCPs on when and how to prescribe off-label medicines to children and to provide recommendations for future European policy.
Journal Article
Mandatory vaccination: a joint statement of the Ethics and Vaccination working groups of the European Academy of Paediatrics
by
Theophilou Leda
,
Hadjipanayis Adamos
,
Brierley, Joe
in
Children
,
Decision making
,
Immunization
2020
Vaccinating children is amongst the most cost-effective interventions for reducing children’s morbidity and mortality. Parents who choose not to vaccinate their children despite having been informed about the evidence on safety and efficacy of vaccines may seriously jeopardise the health of both their own children and others. Contemporary ethical thinking about the limits of parental decision-making over their children’s healthcare treatment often considers the zone of parental discretion. However, with vaccination this is slightly less direct as the benefits are not only accumulated by an individual child but also by children as a population. Forcing parents is of course not the only solution to counteracting the fear of vaccines. Health authorities should certainly fund research and deploy resources on combatting vaccine disinformation.Conclusion: It would be preferable to achieve high rates of vaccination coverage by educating both parents and physicians without adopting any legislation for mandatory vaccination. However, in countries where vaccination uptake is low and/or outbreaks of vaccine-preventable diseases occur, the implementation of mandatory vaccination will most probably save children’s lives. EAP calls for action to make all scheduled childhood vaccinations a matter of fact for all European children.
Journal Article
Rotavirus vaccination for all children or subgroups only? Comment of the European Academy of Paediatrics (EAP) and the European Society for Paediatric Infectious Diseases (ESPID) recommendation group for rotavirus vaccination
by
Guarino, Alfredo
,
Hadjipanayis Adamos
,
Vesikari Timo
in
Children
,
Gastroenteritis
,
Immunization
2020
Rotavirus gastroenteritis affects all children. Studies indicate that by the age of 5 years, almost all children have developed rotavirus antibodies. It has been estimated that in Europe, approximately 6550 children each year die as a result of rotavirus infection. Most of this mortality does not affect children from identifiable risk groups, but previously healthy infants. There is no accountable evidence on increased severity of rotavirus infection in specific risk groups, including children previously born preterm or immunocompromised children. Universal immunization in areas that have successfully achieved large coverage has greatly improved the health of children, reducing infection rates, hospitalization, and costs. Vaccination of infants with presumed high risk may be beneficial for the vaccinated individuals, and such a strategy may also be cost-effective in certain settings. Identifying all high-risk infants within the first few weeks of life is rather difficult especially in countries without primary care pediatricians and goes along with additional costs.Conclusion: Rotavirus vaccines should be recommended as a universal approach for all children and not be restricted to subgroups with assumed increased risk. Targeted vaccination could be considered as an option in countries with limited financial resources.
Journal Article
Access to Vaccination among Disadvantaged, Isolated and Difficult-to-Reach Communities in the WHO European Region: A Systematic Review
by
Copley, Sian
,
Grossman, Zachi
,
Neves, Ana
in
At risk populations
,
Coronaviruses
,
COVID-19 vaccines
2022
Vaccination has a significant impact on morbidity and mortality. High vaccination coverage rates are required to achieve herd protection against vaccine-preventable diseases. However, limited vaccine access and hesitancy among specific communities represent significant obstacles to this goal. This review provides an overview of critical factors associated with vaccination among disadvantaged groups in World Health Organisation European countries. Initial searches yielded 18,109 publications from four databases, and 104 studies from 19 out of 53 countries reporting 22 vaccine-preventable diseases were included. Nine groups representing the populations of interest were identified, and most of the studies focused on asylum seekers, refugees, migrants and deprived communities. Recall of previous vaccinations received was poor, and serology was conducted in some cases to confirm protection for those who received prior vaccinations. Vaccination coverage was lower among study populations compared to the general population or national average. Factors that influenced uptake, which presented differently at different population levels, included health service accessibility, language and vaccine literacy, including risk perception, disease severity and vaccination benefits. Strategies that could be implemented in vaccination policy and programs were also identified. Overall, interventions specific to target communities are vital to improving uptake. More innovative strategies need to be deployed to improve vaccination coverage among disadvantaged groups.
Journal Article
Nasopharyngeal Pneumococcal Carriage among Healthy Children in Cyprus Post Widespread Simultaneous Implementation of PCV10 and PCV13 Vaccines
by
Zachariadou, Chrystalla
,
Efstathiou, Elisavet
,
Hadjipanayis, Adamos
in
Anti-Bacterial Agents - pharmacology
,
Antibacterial agents
,
Antibiotic resistance
2016
The objective of the study was to describe the incidence of pneumococcal nasopharyngeal carriage, serotype distribution and antibiotic resistance profile of pneumococcal nasopharyngeal isolates in healthy children aged 6 to 36 months following the implementation of conjugate vaccines. A nasopharyngeal swab was collected from 1105 healthy children following a stratified random sampling between September 2013 and April 2014. Demographics, vaccination status and data on possible risk factors were recorded. Isolates were serotyped and tested for antibiotic susceptibility. The nasopharyngeal carriage rate was 25.3%. Among 1105 children enrolled, 393 had received PCV13 and 685 PCV10. The prevailing isolated serotypes were: 23A (14.3%), 15A (8.9%), 6C (8.6%), 23B (7.5%), 19A (5.4%) and 15B (5%). The proportion of non-vaccine serotypes, PCV10 serotypes, PCV13 additional serotypes (3, 6A, 19A) was 76.8%, 2.1% and 10.4% respectively. Although children, who were fully or partially vaccinated with PCV13, were 63% less likely to be colonized with additional PCV13 serotypes compared to those vaccinated with PCV10, the difference is not significant (95%Cl = 0.14-1.02, p = 0.053). The highest antibiotic non-susceptible rates were found for erythromycin (28.2%) and penicillin (27.9%). The overall multidrug resistance rate was 13.2%, with serotypes 24F (4/6), 15A (14/25) and 19A (6/15) being the main contributors. Carriage rate was similar between children vaccinated with PCV10 or PCV13. The high incidence of 15A serotype which is also multidrug resistant should be underlined. Ongoing surveillance is needed to monitor the dynamics on nasopharyngeal carriage.
Journal Article
How can primary care practitioners address substance use by adolescents? A position paper of the EUROPEAN academy of PAEDIATRICS
2020
The objective of this article is to review how primary care providers – paediatricians, family practitioners, nurse practitioners - could address the use of substances by adolescents and respond to problematic behaviours and situations. Given the highly addictive properties of nicotine, adolescents should be supported in avoiding any consumption of tobacco or quitting if they already do so. Screening and investigation of substance use is usually not difficult, provided that it is processed in a neutral and empathetic atmosphere and securing confidentiality if the adolescent asks for it. Any type of substance use is potentially linked with adverse events such as injuries, violence, unplanned and unsafe sexual experience, alcoholic coma, ‘bad trips’ or unpleasant psychological experiences. As such, substance use should be identified and openly discussed with the adolescent. Moderate intermittent recreational use of legal and illegal substances (mainly alcohol and cannabis) should be carefully monitored over time, as it can lead to problematic use. Problematic use and substance use disorder require various interventions, including motivational interviewing, family counselling and psychotherapy, especially when substance use is linked with mental health disorders. Despite the importance of confidential care, parents or caregivers should be involved in problematic situations as much as possible.What is known: • While problematic use of substances is transient amongst many adolescents, it may be a threat to health and school/professional functioning • Primary care providers (PCPs) can address queries or offer preventive interventions to adolescents who use substancesWhat is new: • Some interview tools can assist PCPs efficiently to identify problematic users of substances • There are effective approaches that PCPs can use to address problematic use by adolescent patients
Journal Article
Correction to: How can primary care practitioners address substance use by adolescents? A position paper of the EUROPEAN academy of PAEDIATRICS
2020
The authors of the published version of this article inadvertently omitted the table note of the Table 2 under the Appendix section. The complete Table 2 is shown in this article]
Journal Article
COVID-19 Containment Measures at Childcare and Schools in 19 European Countries: An Observational Study on Local, Federal and National Policies
by
Hadjipanayis, Adamos
,
Jansen, Danielle E. M. C.
,
Vervoort, Johanna P. M.
in
adolescents
,
Child
,
Child Day Care Centers
2021
Objectives: After childcare and schools have been closed in March 2020 to prevent the spread of COVID-19, they were open again in most European countries after the summer holidays till early autumn. Aim of this study is to give an overview and to compare COVID-19 childcare and school containment policies in 19 European countries. Methods: We collected data on containment measures among delegates of the European Academy of Pediatrics (EAP), through an online, closed questionnaire in the second half of October 2020. Results: Most policy has been formulated for secondary education. In all three settings policy was most often formulated for individual hygiene, cleaning of surfaces, exclusion of sick children, ventilation, distance between children and between children and teachers. In secondary schools, policy is formulated on face masks in and outside the class. School closure, cancellation of physical education and class size reduction are measures for which the fewest countries have formulated national policies. Conclusion: We recommend to accompany the opening of children’s facilities and schools by surveillance studies that further clarify questions about control measures implemented to halt COVID-19 pandemic.
Journal Article
Fighting the hidden pandemic of antimicrobial resistance in paediatrics: recommendations from the International Pediatric Association
by
Pana, Zoi Dorothea
,
Sultan, Muhammad Ashraf
,
Klein, Jonanthan D
in
Age groups
,
Anti-Bacterial Agents - pharmacology
,
Anti-Bacterial Agents - therapeutic use
2023
According to a recent report, infections attributing to multidrug resistant bacteria may account for up to 30% of the total cases,1 while in specific areas, like in Middle East region, almost 90% of sepsis cases during the neonatal period in neonatal intensive care units were associated with resistant bacteria.2 In the sub-Saharan Africa region, a recent meta-analysis in neonates showed that resistance to WHO recommended β-lactams was observed in 68% cases.3 Several paediatric-related issues have been identified, such as the lack of paediatric antibiotic drug development, the limited paediatric clinical studies and therefore the lack of paediatric-specific data, the limited drug options to treat MDR (multidrug resistant) paediatric infections and the misuse or overuse of antibiotics. [...]of vaccination, antibiotic usage will reduce selection pressure that favours resistant organisms. Attributable deaths and disability-adjusted life-years caused by infections with antibiotic-resistant bacteria in the EU and the European economic area in 2015: a population-level Modelling analysis.
Journal Article