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Background Parental responsiveness is of great importance for positive effects of behavioral and cognitive development in preterm infants and the Emotional availability scales (EAS) is a clinically relevant assessment measure, for early neurodevelopment. The EAS is an observational measure which reflects the quality of parent–child relationship and the child’s socio-emotional development. It has 4 adult domains (sensitivity, structuring, non-intrusiveness, non-hostility) and 2 child domains (responsiveness, involvement) (Biringen 2014). In an ongoing RCT of an intervention for extremely preterm (EPT) born infants and their parents, the Stockholm Preterm Interaction-Based Intervention (SPIBI), the primary outcome measure is EAS used at 12 months corrected age (CA). The aim for this sub-study is to evaluate the inter-rater reliability of EAS in this cohort. Method During the first year after discharge, ten home visits were carried out from specially educated interventionists of our multidisciplinary team. 130 EPT infants were recruited and 115 have been filmed and assessed at 12 months CA. The parent was instructed to play with the infant for 10 minutes. Dyads were filmed, videos assessed and scored by a trained EAS-accredited team member. 20% of the videos (23/115) were assessed by an additional EAS-accreditor to evaluate inter-rater-reliability. Interclass Correlation Coefficient (ICC) were used. To obtain authenticity with real-life, the videos were filmed in a home setting with opportunity to choose study parent. Interaction were encouraged to proceed in an ordinary pattern. Results ICC values range 0,86 - 0,96 within all dimensions, all individual values, 95%CI (Table 1). This indicates high inter-rater reliability, although some of the subscales had lower ICC (0,73-0,98). Conclusion The SPIBI study corresponds well with EAS scoring assessment method for reflection of parent-infant interaction at 12 months CA in EPT born infants.

The aim was to explore longitudinal motor development in children with cerebral palsy (CP) in Sweden with respect to the Gross Motor Function Classification System (GMFCS). In this national CP registry-based study, 2138 children aged 0.5-19 years participated (42% girls). The distribution with respect to GMFCS was I: 49%, II: 16%, III: 10%, IV: 14%, and V: 11%. In total, 5538 assessments (mean 2.7, min-max: 1-9) with the Gross Motor Function Measure-66 were included. Data were analysed using non-linear mixed-effects regression models, and the Stable Limit Model was selected to fit data. Five distinct curves of predicted gross motor development with respect to GMFCS levels were obtained. The achieved motor development was maintained over time. The estimated average GMFM-66 limit and the average age when 90% of the expected limits were reached were at GMFCS I: 88 at age 4.5; GMFCS II: 71 at age 4.2; GMFCS III: 54 at age 3.1; GMFCS IV: 38 at age 2.6, and at GMFCS V: 18 at age 0.9. In conclusion, this is the first national population-based study following motor development in CP. Five distinct curves reported in previous controlled research studies were confirmed. Our study adds knowledge about motor development captured in children's everyday context.

SPIBI is a strength-based early intervention targeting parent-child interaction amongst extremely preterm born infants, currently tested in an RCT in Sweden. Of 130 infants, 72% have reached 12 months of age. Based on interviews with 17 parents’ and 6 intervention providers we identified SPIBI strengths and shortcomings. SPIBI seems feasible, is possible to integrate it into home-visiting practice and is appreciated by parents. Identified challenges are geographical distance; recruitment obstacles including Covid-19, leading to longer-term implementation; service-provider fatigue; and social adversities amongst some eligible participants requiring ethical considerations. Future improvements include: reconsidering inclusion criteria, increasing use of e-health, and exploring the possibility of a tiered approach.

Objective: To test if botulinum toxin-A (BoNT-A) is effective in reducing chronic muscle-related pain in adults with spastic cerebral palsy (CP), as compared to placebo. Design: A single-center, double-blind, parallel, randomized placebo-controlled trial. The design included an interim analysis to allow for confirmatory analysis, as well as pilot study outcomes. Setting: Tertiary university hospital. Participants: Adults with spastic CP and chronic pain associated with spastic muscle(s). Intervention: Treatment was one session of electromyographically guided intramuscular injections of either BoNT-A or placebo normosaline. Main Study Outcomes: The primary outcome was the proportion who achieved a reduction of pain intensity of two or more steps on the Numerical Rating Scale 6 weeks after treatment. Results: Fifty individuals were screened for eligibility, of whom 16 were included (10 female, 6 male, mean age = 32 years, SD = 13.3 years). The randomization yielded eight participants per treatment arm, and all completed the study as randomized. The study was stopped at the interim analysis due to a low probability, under a preset threshold, of a positive primary outcome. Four individuals were treatment responders in the BoNT-A group for the primary outcome compared to five responders in the placebo group (p = 1.000). Adverse events were mild to moderate. In exploratory analysis, the BoNT-A group had a trend of continuing reduction of pain at the last follow-up, after the primary endpoint. Conclusions: This study did not find evidence that BoNT-A was superior to placebo at the desired effect size (number needed to treat of 2.5) at 6 weeks after treatment. Trial registration: ClinicalTrials.gov: NCT02434549

Children born extremely preterm (e.g. before 28 gestational weeks, EPT) runs a greater risk of cognitive, motor and neurobehavioral impairment later in life, compared to children born at term. Moreover, being a parent of an EPT born child increases the probability of developing depression and posttraumatic stress disorder post-partum, as well as the premature birth may affect the parent-child interaction negatively. In an attempt to decrease the psychological and motoric negative impact of both the child and parents, our multi-professional team has developed an early intervention during the first year at home focusing om parent-child interaction of the EPT born children: Stockholm Preterm Interaction-Based Intervention, SPIBI (Baraldi et al., 2020a). The target of the RCT is 130 children and after 32 months 112 children has been included in the study, evenly distributed in the intervention group and control group. At children’s corrected age of one-year, parents from 14 of the first included families were interviewed about their experiences from the intervention program, resulting in a qualitative article. Three main themes of parental experiences of the first year at home emerged: child-related concerns (concerning child medical state, self-regulation and recovery), parental inner state (concerning loneliness, ambivalence and premature parental identity), and changed family dynamics (concerning the couple, siblings and intergenerational support). The parents from the intervention group reported that the intervention had given them security, a sense that the interventionist has been knowledgeable and in some cases that the program was important but not necessary to them (Baraldi et al., 2020b). With 85% of the targeted subjects included it is clear that an extensive early home-visit intervention program is feasible in the Swedish context, even though the pandemic has slowed down the recruitment pace and has forced adjustments to be made such as the use of telemedic

AIM: To describe health-related quality of life (HRQoL), pain, fatigue, and other health variables in young adults with cerebral palsy (CP), and to explore associations with the Gross Motor Function Classification System - Expanded and Revised (GMFCS-ER) and physical activity. METHOD: This was a cross-sectional study of 61 young adults at a mean age of 21 years 2 months (standard deviation 8mo, range 20-22y) with CP, from a geographically defined area. Data collection included: Short Form 36 version 2 for HRQoL, Brief Pain Inventory - Short Form, Fatigue Severity Scale, level of physical activity, medical history, and physical examination. RESULTS: Overall HRQoL equalled that of population norms; however self-reported physical health was lower in GMFCS-ER levels III to V compared to GMFCS-ER levels I to II. Self-reported mental health was, inversely, lower in GMFCS-ER levels I to II compared to GMFCS-ER levels III to V. Pain prevalence was 49%, and pain was present across all GMFCS-ER levels. Fatigue, as well as sleep problems, had 41% prevalence, with fatigue severity decreasing with increasing level of physical activity. INTERPRETATION: General HRQoL in young adults with CP was comparable to population norms. Pain and fatigue are important to address in high motor-functioning individuals also. Physical activity could be a possible protective factor against fatigue. WHAT THIS PAPER ADDS: Health-related quality of life in young adults with cerebral palsy (CP) was comparable to population norms. Pain, fatigue, and sleep problems occurred at all Gross Motor Function Classification System levels. There is a possible protective effect of physical activity on fatigue.

In Sweden 400 children yearly are born extremely preterm (EPT; more than three months early). These children have an increased risk of later academic difficulties, neuropsychiatric disorder, cognitive and mental health issues. Since the first 1000 days of the brain development are so crucial for later development, the interdisciplinary Stockholm Preterm Interaction-Based Intervention (SPIBI) aims at strengthening the parent-child interaction, child development and parental mental health. The research is based on pedagogical, motor-developmental, medical and psychological science. The program is based on Vygotski’s theory of the zone of proximal development, as well theoretical frameworks of early intervention (Guralnick; Shonkoff). Additionally, Als’ synactive theory of understanding premature infant communication and needs, Bowlby’s attachment theory, and Emde’s emotional availability theory have been applied. SPIBI is an ongoing research project funded by Stockholm-County-Stockholm-University joint-collaboration grant 20160881. It is an RCT targeting 130 EPT infants and their parents in Stockholm with a 3-year inclusion period starting September 2018. The intervention consists of ten home-visits during the first year by trained interventionists, supporting the next developmental step of the child through a scaffolding process, strengthening parental sensitivity to infant cues, and promoting infant’s self-regulation. SPIBI has recruited and trained six multi-professional-NICU-experienced interventionists. Control group participants receive TAU plus an extended follow-up program. The overall aim is to present the framework and theory of change of SPIBI, relating to research findings, welfare policies and recommendations for infant’s “chain of care”. So far, sixty eligible infants have been identified within four neonatal units; of which 48 approved participation. The primary outcome is emotional availability of the parent and child, where we hypothesize that the i

Through secondary analyses of the Small Step. Randomized Control Trial, we tested the hypothesis that children at risk of developing cerebral palsy (CP) or other neurodevelopmental disorders would learn what they practice, i.e., that they would have a more rapid development within the specifically trained foci (hand use or mobility) of each time period compared to the development rate within the foci not trained at that time. Nineteen infants (6.3 (1.62) months corrected age) included in the Small Step program were assessed at six time points during the intervention. For statistical analysis, general and mixed linear models were used, and the independent variables were the Peabody Developmental Motor scale (stationary, locomotion, grasping and visuomotor sub scales), the Gross Motor Function Measure-66 and the Hand Assessment for Infants. Outcomes related to gross motor function improved significantly more after mobility training than after hand use training, while fine motor function was improved to the same extent following both training types. Significantly higher improvements after the first training period were seen in one out of three outcome measures in both gross and fine motor assessments. The improvements observed were all independent of diagnosis at two years. The concept “you learn what you practice” was most clearly confirmed in the case of gross motor development.

Sweden has a proactive neonatal intensive care, saving children born from gestation week 22, with a 90% survival rate in the extremely preterm (EPT) group. With increased survival rates, the long-term outcome of the EPT children has gained much research interest. Recent studies indicate that 1/3 of the EPT-children in Sweden show moderate to severe neurodevelopmental deficits when beginning school. An interdisciplinary research team has designed an intervention for EPT infants and their caregivers in their home-environment after hospital discharge and throughout the first year of life. The aim of the ongoing randomized controlled trial is to study intervention effects on the children’s cognitive, motor and psychosocial function, the parental mental health and the infant-parent interaction. This paper present the intervention’s theory of change, the validity considerations, and an overview of the syllabus of the training given to the interdisciplinary team of six clinicians who serve as interventionists.

Background Extremely preterm (EPT) born children are at increased risk of cognitive and neurodevelopmental impairment, neuropsychiatric disorders and academic difficulties. Parents of EPT born children are extra vulnerable for anxiety, posttraumatic stress disorder and depression and the parent-child interaction is negatively affected by prematurity. There is some evidence that early interventions have beneficial effects on neurocognitive and motor outcomes (Spittle A et al 2015). Based on a previous intervention (Verkerk G et al 2012) and adjusted to the Swedish context with 480 days paid parental leave, we created a post–discharge intervention, SPIBI, for families of EPT born children. Method The aim of (SPIBI) is to improve the quality of the parent-child interaction, child development and parental mental health in families with EPT born children. . SPIBI is a randomized controlled beginning at discharge and lasting until the child is 12 months corrected age. The trial design is a two arm randomized trial with four recruiting sites in Stockholm. Intervention group (target, n=65) receives 10 visits and two telephone calls from a trained interventionist and the control group (target n=65) receives treatment as usual plus an extended follow-up program. The SPIBI-team has recruited and trained 6 multi-professional and NICU-experienced interventionists. The training takes one year (0.2 of full time) and the content was both theoretical and practical, including pilot-cases. Result SPIBI is an ongoing research project, beginning the 1st of September 2018 and planning to end recruitment the 31st of August 2020 and finishing the home-visits in August 2021. By the end of April 2019, 33 eligible infants had been identified within the four neonatal units in Stockholm; of which 26 children approved and 7 children declined participation. At this stage, three children have dropped out of the study, because of severe social challenges and child death. Identified challenges have

The objective was to evaluate the effects of the Small Step Program on general development in children at risk of cerebral palsy (CP) or other neurodevelopmental disorders. A randomized controlled trial compared Small Step with Standard Care in infants recruited at 4-9 months of corrected age (CA). The 35-week intervention targeted mobility, hand use, and communication during distinct periods. The Peabody Developmental Motor Scales(2ed) (PDMS-2) was the primary outcome measure. For statistical analysis, a general linear model used PDMS-2 as the main outcome variable, together with a set of independent variables. Thirty-nine infants were randomized to Small Step (n = 19, age 6.3 months CA (1.62 SD)) or Standard Care (n = 20, age 6.7 months CA (1.96 SD)). Administering PDMS-2 at end of treatment identified no group effect, but an interaction between group and PDMS-2 at baseline was found (p < 0.02). Development was associated with baseline assessments in the Standard Care group, while infants in the Small Step group developed independent of the baseline level, implying that Small Step helped the most affected children to catch up by the end of treatment. This result was sustained at 2 years of age for PDMS-2 and the PEDI mobility scale.

Background: Children with cerebral palsy (CP) have life-long motor disorders, and they are typically subjected to extensive treatment throughout their childhood. Despite this, there is a lack of evidence supporting the effectiveness of early interventions aiming at improving motor function, activity, and participation in daily life. The study will evaluate the effectiveness of the newly developed Small Step Program, which is introduced to children at risk of developing CP during their first year of life. The intervention is based upon theories of early learning-induced brain plasticity and comprises important components of evidence-based intervention approaches used with older children with CP. Method and design: A two-group randomised control trial will be conducted. Invited infants at risk of developing CP due to a neonatal event affecting the brain will be randomised to either the Small Step Program or to usual care. They will be recruited from Astrid Lindgren Children's Hospital at regular check-up and included at age 3-8 months. The Small Step Program was designed to provide individualized, goal directed, and intensive intervention focusing on hand use, mobility, and communication in the child's own home environment and carried out by their parents who have been trained and coached by therapists. The primary endpoint will be approximately 35 weeks after the start of the intervention, and the secondary endpoint will be at 2 years of age. The primary outcome measure will be the Peabody Developmental Motor Scale (second edition). Secondary assessments will measure and describe the children's general and specific development and brain pathology. In addition, the parents' perspective of the program will be evaluated. General linear models will be used to compare outcomes between groups. Discussion: This paper presents the background and rationale for developing the Small-Step Program and the design and protocol of a randomized controlled trial. The aim of the Small

The overall aims of the thesis were to study the effects of goal-directed therapy (GDT) in children with cerebral palsy (CP) in an ecological setting, using the ICF-CY as a frame of reference, and to determine the reliability of the selective motor control (SMC) scale. Measures included in this thesis were represented in the domains of body function/structure and activity and participation. A specific interest was directed towards the SMC scale, since associations with gross motor activity have previously been detected. During the past few decades, the aim with therapy for children with CP has gradually moved from normalisation to activity and participation in meaningful life situations. Modern theories of motor development, motor control and motor learning support a treatment philosophy in which children with CP are encouraged to actively search for optimal strategies to accomplish meaningful activities and are given optimal possibilities to practice in their everyday environments. Today emphasis is also made to actively include the family. There is now growing evidence in support of GDT, even though there is a variation in the therapy setting, the level of child/family s involvement in choosing the goals and the therapy duration. A specific interest were if GDT could give beneficial effects in comparison to Activity focused therapy (AT), what the long-term effects on gross motor capacity and goal attainment were and if body functions measures (SMC, Passive Range of Motion (PROM) and Modified Ashworth Scale (MAS)) were affected after GDT. The inter-rater reliability of the SMC scale was evaluated by three assessors who simultaneously and independently scored the child s ability to dorsiflex the ankle. A consecutive sample of 40 children with CP, 3-16 years and in GMFCS I-V, was examined. The results revealed fair/good to strong inter-rater reliability. The test-retest reliability was achieved through a second examination of 29 children at a different occasion. Weig