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1.
Pediatr Allergy Immunol ; 35(4): e14129, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38664926

RESUMEN

Monitoring is a major component of asthma management in children. Regular monitoring allows for diagnosis confirmation, treatment optimization, and natural history review. Numerous factors that may affect disease activity and patient well-being need to be monitored: response and adherence to treatment, disease control, disease progression, comorbidities, quality of life, medication side-effects, allergen and irritant exposures, diet and more. However, the prioritization of such factors and the selection of relevant assessment tools is an unmet need. Furthermore, rapidly developing technologies promise new opportunities for closer, or even "real-time," monitoring between visits. Following an approach that included needs assessment, evidence appraisal, and Delphi consensus, the PeARL Think Tank, in collaboration with major international professional and patient organizations, has developed a set of 24 recommendations on pediatric asthma monitoring, to support healthcare professionals in decision-making and care pathway design.


Asunto(s)
Asma , Humanos , Asma/diagnóstico , Asma/terapia , Niño , Calidad de Vida , Antiasmáticos/uso terapéutico , Técnica Delphi , Monitoreo Fisiológico/métodos
2.
Lancet Respir Med ; 12(1): 78-88, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38070531

RESUMEN

Improving the treatment of non-cystic fibrosis bronchiectasis in children and adolescents requires high-quality research with outcomes that meet study objectives and are meaningful for patients and their parents and caregivers. In the absence of systematic reviews or agreement on the health outcomes that should be measured in paediatric bronchiectasis, we established an international, multidisciplinary panel of experts to develop a core outcome set (COS) that incorporates patient and parent perspectives. We undertook a systematic review from which a list of 21 outcomes was constructed; these outcomes were used to inform the development of separate surveys for ranking by parents and patients and by health-care professionals. 562 participants (201 parents and patients from 17 countries, 361 health-care professionals from 58 countries) completed the surveys. Following two consensus meetings, agreement was reached on a ten-item COS with five outcomes that were deemed to be essential: quality of life, symptoms, exacerbation frequency, non-scheduled health-care visits, and hospitalisations. Use of this international consensus-based COS will ensure that studies have consistent, patient-focused outcomes, facilitating research worldwide and, in turn, the development of evidence-based guidelines for improved clinical care and outcomes. Further research is needed to develop validated, accessible measurement instruments for several of the outcomes in this COS.


Asunto(s)
Bronquiectasia , Calidad de Vida , Adolescente , Niño , Humanos , Bronquiectasia/terapia , Técnica Delphi , Evaluación de Resultado en la Atención de Salud , Proyectos de Investigación , Revisiones Sistemáticas como Asunto , Resultado del Tratamiento , Consenso
5.
Eur Respir J ; 60(5)2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35728974

RESUMEN

Bronchiectasis is being diagnosed increasingly in children and adolescents. Recurrent respiratory exacerbations are common in children and adolescents with this chronic pulmonary disorder. Respiratory exacerbations are associated with an impaired quality of life, poorer long-term clinical outcomes, and substantial costs to the family and health systems. The 2021 European Respiratory Society (ERS) clinical practice guideline for the management of children and adolescents with bronchiectasis provided a definition of acute respiratory exacerbations for clinical use but to date there is no comparable universal definition for clinical research. Given the importance of exacerbations in the field, this ERS Task Force sought to obtain robust definitions of respiratory exacerbations for clinical research. The panel was a multidisciplinary team of specialists in paediatric and adult respiratory medicine, infectious disease, physiotherapy, primary care, nursing, radiology, methodology, patient advocacy, and parents of children and adolescents with bronchiectasis. We used a standardised process that included a systematic literature review, parent survey, and a Delphi approach involving 299 physicians (54 countries) caring for children and adolescents with bronchiectasis. Consensus was obtained for all four statements drafted by the panel as the disagreement rate was very low (range 3.6-7.2%). The panel unanimously endorsed the four consensus definitions for 1a) non-severe exacerbation and 1b) severe exacerbation as an outcome measure, 2) non-severe exacerbation for studies initiating treatment, and 3) resolution of a non-severe exacerbation for clinical trials involving children and adolescents with bronchiectasis. This ERS Task Force proposes using these internationally derived, consensus-based definitions of respiratory exacerbations for future clinical paediatric bronchiectasis research.


Asunto(s)
Antibacterianos , Bronquiectasia , Adulto , Adolescente , Niño , Humanos , Antibacterianos/uso terapéutico , Calidad de Vida , Bronquiectasia/terapia , Bronquiectasia/tratamiento farmacológico , Sistema Respiratorio , Evaluación de Resultado en la Atención de Salud
7.
Breathe (Sheff) ; 18(3): 220144, 2022 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-36865655

RESUMEN

The global burden of bronchiectasis in children and adolescents is being recognised increasingly. However, marked inequity exists between, and within, settings and countries for resources and standards of care afforded to children and adolescents with bronchiectasis compared with those with other chronic lung diseases. The European Respiratory Society (ERS) clinical practice guideline for the management of bronchiectasis in children and adolescents was published recently. Here we present an international consensus of quality standards of care for children and adolescents with bronchiectasis based upon this guideline. The panel used a standardised approach that included a Delphi process with 201 respondents from the parents and patients' survey, and 299 physicians (across 54 countries) who care for children and adolescents with bronchiectasis. The seven quality standards of care statements developed by the panel address the current absence of quality standards for clinical care related to paediatric bronchiectasis. These internationally derived, clinician-, parent- and patient-informed, consensus-based quality standards statements can be used by parents and patients to access and advocate for quality care for their children and themselves, respectively. They can also be used by healthcare professionals to advocate for their patients, and by health services as a monitoring tool, to help optimise health outcomes.

8.
Breathe (Sheff) ; 16(1): 190305, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-32494301

RESUMEN

The @EuroRespSoc summers schools of adult and paediatric respiratory medicine took place on June 12-15, 2019, in Barcelona, Spain http://bit.ly/38VPAc5.

9.
Wiad Lek ; 71(9): 1844-1848, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30737951

RESUMEN

Infantile fibrosarcoma is a malignant tumor, which is most common in infants, preferentially localized in the lower limbs. An important prognostic factor of the disease is early diagnostics, both clinical and instrumental. The operative treatment of infantile fibrosarcoma is a leading treatment method. The article describes a clinical case of infantile fibrosarcoma in a newborn with fetal development of the disease.


Asunto(s)
Fibrosarcoma/congénito , Humanos , Recién Nacido , Neoplasias de los Tejidos Blandos/congénito
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