Protocol for a multi-phase, multi-center, real-world, hybrid effectiveness-implementation study of a digital intervention for pediatric chronic pain co-designed with patients (Digital SPA).

Background: Children and adolescents with chronic pain are a vulnerable population who often lack the resources to manage their condition. Due to high personal, social, and economic consequences, proper management in its early stages is key to reducing disability. The aim of this project is to co-develop a digital intervention for pediatric chronic pain (Digital SPA) with end-users and to evaluate its effectiveness and implementation outcomes in Spain. Methods: (Phase 1) Focus groups with patients, parents, and clinicians (n = 5-6 each) will inform about unmet pain care needs and provide a starting point for co-designing the intervention. (Phase 2) Content creation and usability testing will be based on the results of Phase 1, and the theory-driven development will follow the latest available evidence. The intervention will use validated psychological techniques focused on improving functioning by teaching pain coping skills. (Phase 3) Hybrid effectiveness-implementation trial. Participants (n = 195) will be adolescents aged 12-17 years old with chronic pain and one of their parents. Assessments include physical function, pain, sleep, anxiety, mood, satisfaction and adherence to the treatment, and number of visits to the emergency room. A qualitative framework analysis will be conducted with data from Phase 1. Effects of the intervention will be evaluated using linear multilevel modeling. The Consolidated Framework for Implementation Research (CFIR) and Behavioral Interventions Using Technology (BIT) frameworks will be used to evaluate implementation. Discussion: This study is expected to produce a co-created evidence-based digital intervention for pediatric chronic pain and a roadmap for successful implementation. Trial registration number TRN and date of registration: ClinicalTrials.gov (registered on 26 June 2023: https://clinicaltrials.gov/study/NCT05917626). Contributions to the literature The implementation of digital health interventions has two major gaps: (1) adherence to treatment is suboptimal, and (2) the process of making the interventions available to the end-user in a sustainable way is often unsuccessful.In this study, we expect that assessing users' needs and co-designing an intervention with them will improve adherence.Documenting the implementation process from the project inception and integrating the results into an implementation framework will allow for replication and extension in different contexts.This study will increase the knowledge about implementation in a vulnerable population: adolescents with chronic pain without access to in-person multidisciplinary pain care.

Sedation in pediatric palliative care: The role of pediatric palliative care teams.

OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams. METHODS: Ambispective study with the participation of 14 PPCT working in Spain. RESULTS: From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years' experience (66.7% vs. 45.5%, p = 0.018). SIGNIFICANCE OF RESULTS: PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.

Situación actual y retos de los pediatras españoles en el manejo del dolor infantil / Challenges and current status of children pain management in Spain

El dolor en Pediatría es un síntoma con frecuencia infradiagnosticado y deficientemente tratado a pesar de su prevalencia, siendo el déficit de conocimientos de los pediatras una de las barreras para garantizar un manejo eficaz. El presente trabajo describe el escenario actual y los retos en el abordaje diagnóstico y terapéutico del dolor infantil por pediatras en nuestro medio. Los resultados se obtienen de un estudio transversal descriptivo que se realiza entre octubre de 2021 y marzo de 2022 mediante encuesta de difusión a pediatras españoles diseñada por el Grupo Español para el Estudio de Dolor Pediátrico. Se pone el foco especialmente en las oportunidades de formación en diferentes aspectos del dolor pediátrico. (AU)

Pain in children population is prevalent, but its proper diagnosis and management are frequently insufficient in pediatrics daily practice. Lack of knowledge of the professionals in charge is a recognized barrier to ensure an appropiate approach to pain in this population. Our present study reflects the current status of pain management and the challenges in diagnosis and treatment that pediatricians face in their daily work. This information is obtained from a survey made with a voluntary questionaire, desinged and distributed online by Grupo Español para el Estudio del Dolor Pediátrico to pediatricians in Spain from October 2021 to March 2022. The final objective of the questionaire was to shed some light into the problem and find out which areas of pain management knowledge are in need of improvement. (AU)

Challenges and current status of children pain management in Spain.

Pain in children population is prevalent, but its proper diagnosis and management are frequently insufficient in pediatrics daily practice. Lack of knowledge of the professionals in charge is a recognized barrier to ensure an appropiate approach to pain in this population. Our present study reflects the current status of pain management and the challenges in diagnosis and treatment that pediatricians face in their daily work. This information is obtained from a survey made with a voluntary questionaire, desinged and distributed online by "Grupo Español para el Estudio del Dolor Pediátrico (GEEDP)" to pediatricians in Spain from october 2021 to march 2022. The final objective of the questionaire was to shed some light into the problem and find out which areas of pain management knowledge are in need of improvent.

Documento de posicionamiento del Grupo Español para el Estudio del Dolor Pediátrico (GEEDP) de la Asociación Española de Pediatría sobre el registro del dolor como quinta constante / Position document of the spanish association of paediatrics group for the study of paediatric pain on the recording of pain as fifth vital sign

El Grupo Español para el Estudio del Dolor Pediátrico (GEEDP) se forma en 2017 con el objetivo de ayudar a reducir o eliminar el dolor de los neonatos, lactantes, niños y adolescentes. Ante un mismo diagnóstico de dolor, los pacientes pueden padecer dolores agudos, crónicos, por procedimientos, postoperatorio, nociceptivos, neuropáticos o mixtos. Sin una adecuada valoración clínica basada en la edad, la enfermedad de base y el tipo de dolor sospechado, este sufrimiento pasa desapercibido con demasiada frecuencia y como consecuencia es infratratado y poco prevenido. La prevalencia del dolor agudo en Pediatría es difícil de estimar y según la evidencia científica actual, podemos determinar que varía entre un 22% (dolor por procedimientos) y un 77% (dolor en los pacientes de urgencias y en las plantas de hospitalización); con relación al dolor crónico, hasta un 30% de los niños pueden padecerlo en algún momento de su vida. Entre las barreras detectadas en el diagnóstico de dolor se encuentran: la dificultad para su valoración por falta de unidad en su registro, existencia de diversas escalas de valoración (según edad y tipo de dolor) y por la ausencia de formación en manejo e interpretación de estas. A esto se puede sumar, en según qué ámbitos sanitarios, la elevada presión asistencial y las dificultades de comunicación entre profesionales y entre estos con las familias. Desde nuestro grupo de trabajo de la AEP deseamos manifestar nuestro claro posicionamiento en la recomendación de la valoración y registro del dolor de forma sistemática en todos los niños atendidos en el sistema sanitario, considerando así el dolor como la quinta constante a determinar después de las constantes vitales

The Spanish Group for Children's Pain Study was created in 2017 in an aim to prevent, remove or reduce pain in neonates, infants, children, and adolescents. Along with a diagnosis of pain, a paediatric patient may suffer from acute or chronic pain, neuropathic, nociceptive, or mixed pain, as well as pain from procedures, and post-surgical pain. Pain suffering is too often ignored and not diagnosed. As a result of this, pain prevention and pain treatment fails. Acute pain prevalence in scientific literature is estimated to be between 22% (procedures pain) and 77% (pain on patients in emergency departments and in hospital wards). Furthermore, up to 30% of children could suffer from chronic pain during their childhood. Among the barriers detected in pain management are: difficult assesment caused by a lack of unity in pain registry, difficuties due to the choice of an assessment pain scale (according to age and type of pain), and the absence of training in the management and interpretation of these pain scales. Additionally, in some health areas there is a high workload pressure and generally there are communication difficulties between professionals, and between them and families. From this AEP working group our clear positioning is expressed in the recommendation of the systematic assessment and recording of pain in all children treated in the health system, thus considering pain as the fifth constant to be determined after the other vital signs

[Position document of the spanish association of paediatrics group for the study of paediatric pain on the recording of pain as fifth vital sign]. / Documento de posicionamiento del Grupo Español para el Estudio del Dolor Pediátrico (GEEDP) de la Asociación Española de Pediatría sobre el registro del dolor como quinta constante.

The Spanish Group for Children's Pain Study was created in 2017 in an aim to prevent, remove or reduce pain in neonates, infants, children, and adolescents. Along with a diagnosis of pain, a paediatric patient may suffer from acute or chronic pain, neuropathic, nociceptive, or mixed pain, as well as pain from procedures, and post-surgical pain. Pain suffering is too often ignored and not diagnosed. As a result of this, pain prevention and pain treatment fails. Acute pain prevalence in scientific literature is estimated to be between 22% (procedures pain) and 77% (pain on patients in emergency departments and in hospital wards). Furthermore, up to 30% of children could suffer from chronic pain during their childhood. Among the barriers detected in pain management are: difficult assesment caused by a lack of unity in pain registry, difficuties due to the choice of an assessment pain scale (according to age and type of pain), and the absence of training in the management and interpretation of these pain scales. Additionally, in some health areas there is a high workload pressure and generally there are communication difficulties between professionals, and between them and families. From this AEP working group our clear positioning is expressed in the recommendation of the systematic assessment and recording of pain in all children treated in the health system, thus considering pain as the fifth constant to be determined after the other vital signs.

Metadona oral para el manejo del dolor neuropático de difícil control en la enfermedad de Fabry / Oral methadone for the management of difficult to control pain in Fabry disease

No disponible

Ovarian juvenile granulosa cell tumors in infants.

Juvenile ovarian granulosa cell tumors (JGCTs) are described infrequently in pediatrics, and their finding in prepubertal patients is exceptional. Most of the tumors are benign, but recurrences up to 4 years of follow-up have been described. We present 2 cases of JGCT in infants: 1 with late recurrence of bilateral ovarian JGCT and 1 in a newborn with Ollier disease. Clinical diagnosis and treatment of JGCT are revised.