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Paediatricians' Views on Pain in Children with Profound Intellectual and Multiple Disabilities.

ABSTRACT: Pain is a frequent issue in children with profound intellectual and multiple disabilities (PIMD). Its identification and treatment can prove highly challenging for primary care physicians, mainly because of the children's limited communication abilities. We used an online survey to explore paediatricians' views regarding the experience and management of pain in children with PIMD and invited 480 professionals working in the canton of Vaud, Switzerland, to take part. We received 121 responses (participation rate 25.5%). A large majority of respondents provided care to children with PIMD. All paediatricians considered that these children feel pain at least as much as typically developing children. However, paediatricians had mixed views on their tolerance to pain. More than 90% held the view that their pain is under-assessed and undertreated. The principal barriers they reported to appropriate management were communication limitations with the child, difficulties in pain assessment, lack of knowledge about children with disabilities and lack of experience. Paediatricians have complex opinions regarding how children with PIMD experience pain and how to manage this problem. Professional education and training on the specificities of children with PIMD, including how to address their pain, seem necessary to foster paediatricians' ability and confidence in approaching this complex issue.

SUBMITTER: Petigas L

PROVIDER: S-EPMC8004709 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Communication interventions have broadened from dialogical meaning-making, assessment approaches, to remote-controlled interactive objects. Yet, interpretation of the mostly pre-or protosymbolic, distinctive, and idiosyncratic movements of children with intellectual disabilities (IDs) or profound intellectual and multiple disabilities (PIMD) using computer-based assistive technology (AT), machine learning (ML), and environment data (ED: location, weather indices and time) remain insufficiently unexplored. We introduce a novel behavior inference computer-based communication-aid AT system structured on machine learning (ML) framework to interpret the movements of children with PIMD/IDs using ED. To establish a stable system, our study aimed to train, cross-validate (10-fold), test and compare the classification accuracy performance of ML classifiers (eXtreme gradient boosting [XGB], support vector machine [SVM], random forest [RF], and neural network [NN]) on classifying the 676 movements to 2, 3, or 7 behavior outcome classes using our proposed dataset recalibration (adding ED to movement datasets) with or without Boruta feature selection (53 child characteristics and movements, and ED-related features). Natural-child-caregiver-dyadic interactions observed in 105 single-dyad video-recorded (30-hour) sessions targeted caregiver-interpreted facial, body, and limb movements of 20 8-to 16-year-old children with PIMD/IDs and simultaneously app-and-sensor-collected ED. Classification accuracy variances and the influences of and the interaction among recalibrated dataset, feature selection, classifiers, and classes on the pooled classification accuracy rates were evaluated using three-way ANOVA. Results revealed that Boruta and NN-trained dataset in class 2 and the non-Boruta SVM-trained dataset in class 3 had >76% accuracy rates. Statistically significant effects indicating high classification rates (>60%) were found among movement datasets: with ED, non-Boruta, class 3, SVM, RF, and NN. Similar trends (>69%) were found in class 2, NN, Boruta-trained movement dataset with ED, and SVM and RF, and non-Boruta-trained movement dataset with ED in class 3. These results support our hypotheses that adding environment data to movement datasets, selecting important features using Boruta, using NN, SVM and RF classifiers, and classifying movements to 2 and 3 behavior outcomes can provide >73.3% accuracy rates, a promising performance for a stable ML-based behavior inference communication-aid AT system for children with PIMD/IDs.

Project description:BackgroundThe care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption.MethodsThe longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care.ResultsAmong the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.).ConclusionsThis study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals.Trial registrationNCT02400528, registered 27/03/2015.

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Paediatricians' Views on Pain in Children with Profound Intellectual and Multiple Disabilities.

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