Background: Current use of smartphone cameras by parents create opportunities for longitudinal home-video-assessments to monitor infant development. We developed and validated a home-video method for parents, enabling Pediatric Physical Therapists to assess infants’ gross motor development with the Alberta Infant Motor Scale (AIMS). The objective of the present study was to investigate the feasibility of this home-video method from the parents’ perspective. Methods: Parents of 59 typically developing infants (0–19 months) were recruited, 45 parents participated in the study. Information about dropout was collected. A sequential mixed methods design was used to examine feasibility, including questionnaires and semi-structured interviews. While the questionnaires inquired after the practical feasibility of the home-video method, the interviews also allowed parents to comment on their feelings and thoughts using the home-video method. Results: Of 45 participating parents, 34 parents returned both questionnaires and eight parents agreed to an interview. Parent reported effort by the infants was very low: the home-video method is perceived as similar to the normal routine of playing. The parental effort level was acceptable. The main constraint parents reported was time planning. Parents noted it was sometimes difficult to find the right moment to record the infant’s motor behavior, that is, when parents were both at home and their baby was in the appropriate state. Technical problems with the web portal, reported by 28% of the parents were also experienced as a constraint. Positive factors mentioned by parents were: the belief that the home videos are valuable for family use, receiving feedback from a professional, the moments of one-on-one attention and interaction with their babies. Moreover, the process of recording the home videos resulted in an increased parental awareness of, and insight into, the gross motor development of their infant. Conclusion: The AIMS home-video method is feasible for parents of typically developing children. Most constraints are of a practical nature that can be addressed in future applications. Future research is needed to show whether the home-video method is also applicable for parents with an infant at risk of motor development problems.
The purpose of this study was a serial assessment of gross motor development of infants at risk is an established procedure in neonatal follow-up clinics. Assessments based on home video recordings could be a relevant addition. In 48 infants (1.5-19 months), the concurrent validity of 2 applications was examined using the Alberta Infant Motor Scale: (1) a home video made by parents and (2) simultaneous observation on-site by a pediatric physical therapist. Parents’ experiences were explored using a questionnaire.
Background: Infantile hereditary proximal spinal muscular atrophy (SMA) type 1 is characterized by onset in the first 6 months of life and severe and progressive muscle weakness. Dysphagia is a common complication but has not been studied in detail. Objective: To study feeding and swallowing problems in infants with SMA type 1, and to explore the relation between these problems and functional motor scores. Methods: We prospectively included 16 infants with SMA type 1 between September 2016 and October 2018. Eleven infants received palliative care and five infants best supportive care in combination with nusinersen. We compiled and used an observation list with feeding related issues and observed feeding sessions during inpatient and outpatient visits. The Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) was used as a measure of motor function. Results: All infants in the palliative care group (median onset of disease 14 days (range 1–56); median inclusion in the study 52 days (range 16–252) demonstrated symptoms of fatigue during feeding and unsafe swallowing. Symptoms were short nursing sessions (10–15 minutes), and not being able to finish the recommended feeding volumes (72%); increased frequency of feeding sessions (55%); coughing when drinking or eating (91%), and wet breathing during and after feeding (64%).Two out of five infants in the nusinersen group (median onset of disease 38 days (range 21–90); inclusion in the study at 63 days (range 3–218) were clinically pre-symptomatic at the start of treatment. The other three infants showed symptoms of fatigue and unsafe swallowing at inclusion in the study. These symptoms initially decreased after the start of the treatment, but (re)appeared in all five infants between the ages of 8 to 12 months, requiring the start tube of feeding. In the same period motor function scores significantly improved (median increase CHOP INTEND 16 points). Conclusion: Impaired feeding and swallowing remain important complications in infants with SMA type 1 after the start of nusinersen. Improvement of motor function does not imply similar gains in bulbar function.
Pre-eclampsia (PE) is a common and severe pregnancy complication and is associated with substantial perinatal morbidity and mortality in mothers and infants. The disease is often characterized by a non-specific presentation which makes it challenging for physician to diagnose PE during regular pregnancy check-ups. To date, there are no diagnostic tests on the market for detection of PE early in pregnancy (first trimester). In this project, we will develop a platform to sensitively analyse calcium-binding proteins (CBPs) which will unlock the full potential of CBPs as predictive PE markers. The technology will also be applicable for other diseases (e.g., dementia and cancer) where CBPs are also known to play a key role in disease pathophysiology. We will develop with phage display antibodies that can recognize calcium binding to specific motifs in proteins. To this end we will synthesize peptide motifs with and without calcium to select antibodies that are specific for calcium bound proteins. These antibodies will be validated for their clinical use. For this goal we will use serum samples from the Improved studie (EU subsidised study) to determine if we can recognize pre-eclampsia in a very early stage. This knowledge can lead to a better treatment of pregnant women suffering from this disease and also will probably increase the well-being for the baby born and the development further in life.
Het Godivapp Applied in Pediatric Primary care (GoAPP) project ontwikkelt, onderzoekt en realiseert de implementatie van een e-health applicatie voor uitwisseling van videomateriaal in zelfstandige praktijken (MKB) in de eerstelijnsgezondheidszorg. Voor een goede analyse van bewegingsproblemen bij baby?s uit risicogroepen is het van belang de motorische ontwikkeling te meten en te volgen in de tijd. Kinderfysiotherapeuten gebruiken hiervoor een observatie-instrument, de Alberta Infant Motor Scale (AIMS). In 2014 en 2015 heeft de GODIVA-onderzoeksgroep (GrOss motor Development of Infants using home Video registration with the AIMS) van Hogeschool Utrecht een methode ontworpen, waarbij de ontwikkeling gevolgd kan worden aan de hand van video?s gemaakt door ouders. De methode wordt door professionals gezien als een aanvulling op bestaande methoden, die het monitoring van kinderen doelmatiger en transparanter maakt. De methode past uitstekend in de huidige e-health ontwikkeling en zelfmanagement/empowerment van ouders. Voor research met de videomethode is een prototype applicatie ontwikkeld waarmee op veilige wijze de filmbeelden verstuurd kunnen worden en opgeslagen. Het prototype is nog niet geschikt voor gebruik binnen de beroepspraktijk. Eerstelijns Kinderfysiotherapiepraktijken zouden graag de applicatie gebruiken. Zij verwachten dat het een waardevolle uitbreiding is van hun mogelijkheden en een kans om als praktijk te innoveren. Zij zien, als zelfstandige ondernemers, echter ook belemmeringen, zoals ICT-ondersteuning en een passende tarifering van een videoconsult. Voor deze kleine bedrijven spelen ook betaalbaarheid en gebruiksgemak een essentiële rol. Binnen GoAPP zijn vijf perspectieven voor innovatie en implementatie van e-health bij elkaar gebracht: eindgebruikers, zorginhoudelijk, harde technologie, zachte technologie en bedrijfskundig perspectief. Georganiseerd rondom drie werkpakketten wordt interdisciplinair onderzoek gedaan naar (1) optimalisatie van het videoportal, (2) implementatie, en (3) bedrijfskundige haalbaarheid, via ontwerpgericht onderzoek, literatuuronderzoek, implementatieanalyse en business-case onderzoek. Een vierde werkpakket richt zich op doorgroei van het netwerk kinderfysiotherapeuten naar een Community of Practice. Doel: Een innovatieve videomethode voor het observeren van de motoriek van zuigelingen, geschikt voor eerstelijnspraktijken kinderfysiotherapie, met een passend implementatieplan en business modelling.
