COnsensus on Pediatric Pain in the Emergency Room: the COPPER project, issued by 17 Italian scientific societies

Benini, Franca; Corsini, Ilaria; Castagno, Emanuele; Silvagni, Davide; Lucarelli, Annunziata; Giacomelli, Luca; Amigoni, Angela; Ancora, Gina; Astuto, M; Borrometi, Fabio; Casilli, Rosa Maria; Chiappini, Elena; Cutrera, Renato; Matteis, Arianna De; Mauro, Giuseppe Di; Musolino, Anna Maria; Fabbri, Andrea; Ferrero, Federica; Fornaro, M.; Gangemi, Michele; Lago, Paola; Macrı̀, Francesco; Manfredini, Luca; Memo, Luigi; Minicucci, Annamaria; Petralia, Paolo; Pinelli, Nicola; Antonucci, Roberto; Tajè, Silvia; Tizi, Emiliano; Venturelli, Leo; Zampogna, Stefania; Urbino, Antonio

doi:10.1186/s13052-020-00858-9

Cited by 12 publications

(12 citation statements)

References 6 publications

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“…We used the method of the consensus paper [ 10 , 11 ]. A multidisciplinary panel of experts was first established, based on the clinical and scientific sharing of the thematic area which is object of the recommendations.…”

Section: Methodsmentioning

confidence: 99%

Recommendations for neonatologists and pediatricians working in first level birthing centers on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian scientific societies and 4 parents’ associations

et al. 2021

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Background Genetic diseases are chronic conditions with relevant impact on the lives of patients and their families. In USA and Europe it is estimated a prevalence of 60 million affected subjects, 75% of whom are in developmental age. A significant number of newborns are admitted in the Neonatal Intensive Care Units (NICU) for reasons different from prematurity, although the prevalence of those with genetic diseases is unknown. It is, then, common for the neonatologist to start a diagnostic process on suspicion of a genetic disease or malformation syndrome, or to make and communicate these diagnoses. Many surveys showed that the degree of parental satisfaction with the methods of communication of diagnosis is low. Poor communication may have short and long-term negative effects on health and psychological and social development of the child and his family. We draw up recommendations on this issue, shared by 6 Italian Scientific Societies and 4 Parents’ Associations, aimed at making the neonatologist’s task easier at the difficult time of communication to parents of a genetic disease/malformation syndrome diagnosis for their child. Methods We used the method of the consensus paper. A multidisciplinary panel of experts was first established, based on the clinical and scientific sharing of the thematic area of present recommendations. They were suggested by the Boards of the six Scientific Societies that joined the initiative: Italian Societies of Pediatrics, Neonatology, Human Genetics, Perinatal Medicine, Obstetric and Gynecological Ultrasound and Biophysical Methodologies, and Pediatric Genetic Diseases and Congenital Disabilities. To obtain a deeper and global vision of the communication process, and to reach a better clinical management of patients and their families, representatives of four Parents’ Associations were also recruited: Italian Association of Down People, Cornelia de Lange National Volunteer Association, Italian Federation of Rare Diseases, and Williams Syndrome People Association. They worked from September 2019 to November 2020 to achieve a consensus on the recommendations for the communication of a new diagnosis of genetic disease. Results The consensus of experts drafted a final document defining the recommendations, for the neonatologist and/or the pediatrician working in a fist level birthing center, on the first communication of genetic disease or malformation syndrome diagnosis. Although there is no universal communication technique to make the informative process effective, we tried to identify a few relevant strategic principles that the neonatologist/pediatrician may use in the relationship with the family. We also summarized basic principles and significant aspects relating to the modalities of interaction with families in a table, in order to create an easy tool for the neonatologist to be applied in the daily care practice. We finally obtained an intersociety document, now published on the websites of the Scientific Societies involved. Conclusions The neonatologist/pediatrician is often the first to observe complex syndromic pictures, not always identified before birth, although today more frequently prenatally diagnosed. It is necessary for him to know the aspects of genetic diseases related to communication and bioethics, as well as the biological and clinical ones, which together outline the cornerstones of the multidisciplinary care of these patients. This consensus provide practical recommendations on how to make the first communication of a genetic disease /malformation syndrome diagnosis. The proposed goal is to make easier the informative process, and to implement the best practices in the relationship with the family. A better doctor-patient/family interaction may improve health outcomes of the child and his family, as well as reduce legal disputes with parents and the phenomenon of defensive medicine.

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Section: Methodsmentioning

confidence: 99%

Recommendations for neonatologists and pediatricians working in first level birthing centers on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian scientific societies and 4 parents’ associations

et al. 2021

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“…We used the method of the consensus paper [5,6]. A multidisciplinary panel of experts was rst established, based on the clinical and scienti c sharing of the thematic area which is object of the…”

Section: Methodsmentioning

confidence: 99%

“…We used the method of the consensus paper [5,6] Initially, a systematically revision of the literature was made, inserting the terms "communication", "diagnosis", "genetic/genomic disease", "congenital malformation", "newborn" in the PubMed search engine. The papers published from 2005 to date were analyzed, also relating to thematic areas different than clinical genetics, such as clinical psychology and bioethics, thus allowing an integration between the aspects of genetic diseases related to communication and bioethics and the biological and clinical ones, also considering the new techniques of genomic diagnosis.…”

Section: Methodsmentioning

confidence: 99%

“…Author details 3 University Neonatology Unit, AOU Città della Salute e della Scienza, Turin, Italy. 4 Unit of Prenatal and Preimplantation Diagnosis, Thalassaemic Hospital, AO Brotzu, Cagliari, Italy 5 Unit of Obstetrics and Gynecology, Prenatal Diagnosis and Fetal Therapy "U. Nicolini", Buzzi Hospital, ASST FBF Sacco, Milan, Italy 6 Unit of General Pediatrics, Emergency and Acceptance Department, Bambino Gesù Pediatric Hospital, Rome, Italy…”

Section: Usamentioning

confidence: 99%

See 1 more Smart Citation

Recommendations on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian Scientific Societies and 4 Parents’ Associations

Serra¹,

Memo

Coscia

et al. 2021

Preprint

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BackgroundGenetic diseases are chronic conditions with relevant impact on the lives of patients and their families. In USA and Europe it is estimated a prevalence of 60 million affected subjects, 75% of whom are in developmental age. A significant number of newborns are admitted in the Neonatal Intensive Care Units (NICU) for reasons different than prematurity, although the prevalence of those with genetic diseases is unknown. It is, then, common for the neonatologist to start a diagnostic process on suspicion of a genetic disease or malformation syndrome, or to make and communicate these diagnoses. Many surveys showed that the degree of parental satisfaction with the methods of communication of diagnosis is low. Poor communication may have short and long-term negative effects on health and psychological and social development of the child and his family. We draw up recommendations on this issue, shared by 6 Italian Scientific Societies and 4 Parents’ Associations, aimed at making the neonatologist's task easier at the difficult time of communication to parents of a genetic disease/malformation syndrome diagnosis for their child. MethodsWe used the method of the consensus paper. A multidisciplinary panel of experts was first established, based on the clinical and scientific sharing of the thematic area of present recommendations. They were suggested by the Boards of the six Scientific Societies that joined the initiative: Italian Societies of Pediatrics, Neonatology, Human Genetics, Perinatal Medicine, Obstetric and Gynecological Ultrasound and Biophysical Methodologies, and Pediatric Genetic Diseases and Congenital Disabilities. To obtain a deeper and global vision of the communication process, and to reach a better clinical management of patients and their families, representatives of four Parents' Associations were also recruited: Italian Association of Down People, Cornelia de Lange National Volunteer Association, Italian Federation of Rare Diseases, and Williams Syndrome People Association. They worked from September 2019 to November 2020 to achieve a consensus on the recommendations for the communication of a new diagnosis of genetic disease.ResultsThe consensus of experts drafted a final document defining the recommendations, for the neonatologist and/or the pediatrician working in a fist level birthing center, on the first communication of genetic disease or malformation syndrome diagnosis. Although there is no universal communication technique to make the informative process effective, we tried to identify a few relevant strategic principles that the neonatologist/pediatrician may use in the relationship with the family. We also summarized basic principles and significant aspects relating to the modalities of interaction with families in a table, in order to create an easy tool for the neonatologist to be applied in the daily care practice. We finally obtained an intersociety document, now published on the websites of the Scientific Societies involved.ConclusionsThe neonatologist/pediatrician is often the first to observe complex syndromic pictures, not always identified in the prenatal period. It is necessary for him to know the aspects of genetic diseases related to communication and bioethics, as well as the biological and clinical ones, which together outline the cornerstones of the multidisciplinary care of these patients. This consensus provide practical recommendations on how to make the first communication of a genetic disease /malformation syndrome diagnosis. The proposed goal is to make easier the informative process, and to implement the best practices in the relationship with the family. A better doctor-patient/family interaction may improve health outcomes of the child and his family, as well as reduce legal disputes with parents and the phenomenon of defensive medicine.

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“…The correct diagnostic and therapeutic approaches to this condition require further investigations [2,3,5]. In such a scenario, due to the lack of firm evidence, a major role is acquired by experts' opinion, which can be addressed through consensus approaches, such as the Delphi Panel, a methodology increasingly used also in the field of pediatrics [9][10][11][12][13].…”

Section: Introductionmentioning

confidence: 99%

Impact and management of drooling in children with neurological disorders: an Italian Delphi consensus

Riva

Amadori²,

Vari³

et al. 2022

Ital J Pediatr

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Background The rate of chronic drooling in children older than 4 years is 0.5%, but it rises to 60% in those with neurological disorders. Physical and psychosocial consequences lead to a reduction in the quality of Life (QoL) of affected patients; however, the problem remains under-recognized and under-treated. We conducted an Italian consensus through a modified Delphi survey to discuss the current treatment paradigm of drooling in pediatric patients with neurological disorders. Methods After reviewing the literature, a board of 10 experts defined some statements to be administered to a multidisciplinary panel through an online encrypted platform. The answers to the questions were based on a 1–5 Likert scale (1 = strongly disagree; 5 = strongly agree). The scores were grouped into 1–2 (disagreement) and 4–5 (agreement), while 3 was discarded. The consensus was reached when the sum of the disagreement or agreement was ≥75%. Results Fifteen statements covered three main topics, namely clinical manifestations and QoL, quantification of drooling, and treatment strategies. All statements reached consensus (≥75% agreement). The 55 Italian experts agreed that drooling should be assessed in all children with complex needs, having a major impact on the QoL. Attention should be paid to investigating posterior hypersalivation, which is often neglected but may lead to important clinical consequences. Given that the severity of drooling fluctuates over time, its management should be guided by the patients’ current needs. Furthermore, the relative lack of validated and universal scales for drooling quantification limits the evaluation of the response to treatment. Finally, the shared therapeutic paradigm is progressive, with conservative treatments preceding the pharmacological ones and reserving surgery only for selected cases. Conclusion This study demonstrates the pivotal importance of a multidisciplinary approach to the management of drooling. National experts agree that progressive treatment can reduce the incidence of complications, improve the QoL of patients and caregivers, and save healthcare resources. Finally, this study highlights how the therapeutic strategy should be reconsidered over time according to the available drugs on the market, the progression of symptoms, and the patients’ needs.

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COnsensus on Pediatric Pain in the Emergency Room: the COPPER project, issued by 17 Italian scientific societies

Cited by 12 publications

References 6 publications

Recommendations for neonatologists and pediatricians working in first level birthing centers on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian scientific societies and 4 parents’ associations

Recommendations for neonatologists and pediatricians working in first level birthing centers on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian scientific societies and 4 parents’ associations

Recommendations on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian Scientific Societies and 4 Parents’ Associations

Impact and management of drooling in children with neurological disorders: an Italian Delphi consensus

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