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Background: A measure to provide insight regarding health-related quality of life of adults with severe motor and intellectual disabilities was lacking. For this reason, the CPADULT was developed. This measure includes domains relating to an individual's physical, mental, and social functioning. The purpose of this study was to assess the psychometric characteristics of the CPADULT. Method: Caregivers (n = 47; 77% female, 23% male) of individuals with severe disabilities who are non-ambulatory completed the questionnaire. Internal consistency, test-retest reliability and construct validity were analysed. Results: Internal consistency was adequate with Cronbach's alpha values from 0.75 to 0.95. Test-retest reliability was good, as intraclass correlation coefficient of the total score was 0.84 (domains: 0.61-0.89). Construct validity was confirmed with significant differences between subgroups of motor or intellectual abilities. Conclusion: The CPADULT has sufficient reliability and validity as a proxy measure of health-related quality of life for adults with severe disabilities who are non-ambulatory.

Effectiveness of motor interventions depends not only on learning content but also on the used teaching strategies. However, little is known regarding the application of teaching strategies in clinical practice. This study aimed to develop and assess psychometric properties of a new Dutch observational instrument to document teaching strategies: the Optimizing Performance through Intrinsic Motivation and Attention for Learning (OPTIMAL) Strategies Observational Tool (OSOT). Based on the OPTIMAL theory for motor learning from Wulf and Lewthwaite, the OSOT includes three variables: (a) expectancies, (b) autonomy, and (c) attention. The OSOT's content was created by extracting relevant items from literature and existing instruments. To assess its psychometric properties, a convenience sample of 18 physiotherapy sessions for children with developmental coordination disorder was employed. Video recordings of these sessions were analyzed using Noldus The Observer XT. Relative duration (percentage of session time) was calculated for each item. Intraclass correlations were calculated to examine interrater and intrarater reliability. The design process resulted in 43 items in total. Interrater and intrarater intraclass correlations ranged from 0.48 to 0.99, with 81% (interrater), respectively, 95% (intrarater) of the items scoring above 0.75, indicating excellent agreement. The OSOT enables systematic and reliable observation of Optimizing Performance through Intrinsic Motivation and Attention for Learning teaching strategies used by therapists in Dutch clinical settings.

Background: Insight in health-related quality of life (HRQoL) of adults with severe disabilities who are non-ambulatory is important, but a measure is lacking. The aim was to develop a HRQoL measure for this group. Method: The developmental process consisted of the adaptation process of a proxy HRQoL measure for children with severe disabilities who are non-ambulatory and the assessment of the sensibility of the developed instrument. A three-step process was used: focus groups, e-survey and interviews. Results: In total, 72% of the items remained unchanged. Three new items and one element to an existing item were added. In ten items, the formulation of the items was adapted to the target group. Concerning the sensibility, respondents suggested minor changes to the instruction and the output scales. Conclusions: This study has yielded a proxy HRQoL measure for adults with severe disabilities who are non-ambulatory, the CPADULT, with good sensibility.

Aim: To explore patients' experiences of shared decision‐making, in nursing care during their stay in a healthcare institution. Design: This study employed a qualitative descriptive design. Methods: Twenty participants were interviewed from two rehabilitation centres, a nephrology ward of a hospital, and a rehabilitation ward of a long‐term care facility. A constant comparative method was used for the inductive analysis. Results: The main theme was 'feeling seen and understood', in the context of person‐centred care, which served as the unifying thread across five themes. The five themes included the importance of a positive nurse–patient relationship as a foundation for shared decision‐making. Next, patients experienced collaboration, and this was influenced by verbal and non‐verbal communication. Another theme was that patients often felt overwhelmed during their stay, affecting shared decision‐making. The fourth theme was that many decisions were not made through the shared decision‐making process but were still perceived as satisfactory. The final theme highlighted patients' perspectives on their role in decision‐making and influencing factors. Conclusion: Patients describe how feeling seen and understood is a prerequisite for shared decision‐making as a part of person‐centred care. For nurses, this implies that they should focus on aspects such as building a good relationship and acknowledgement of patients' feelings and circumstances, next to empowering patients to feel knowledgeable and valued. This way patient's motivation to participate in shared decision‐making will be enhanced. Reporting Method: Following the EQUATOR guidelines, reporting was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). Patient or Public Contribution: Patients were involved in the study through interviews during the research process and member checks during analysis. Implications for the profession and/or patient care: Before initiating shared decision‐making processes, prioritise making the patient feel seen and understood. Be mindful that patients often feel overwhelmed during their stay. Use a person‐centred approach to make patients feel knowledgeable—this empowers them for shared decision‐making. Impact: Research on patients' experiences of shared decision‐making in nursing care is limited, yet crucial for understanding patients' needs in shared decision‐making. This study highlights patients' perceptions that shared decision‐making is best facilitated within the nurse–patient relationship by nurses who primarily focus on ensuring that patients feel acknowledged and understood. [ABSTRACT FROM AUTHOR]

Although the attention for functional outcomes after burn injury has grown over the past decades, little is known about functional independence in performing activities of daily living in children after burn injury. Therefore, in this prospective cohort study functional independence was measured by burn care professionals with the WeeFIM[R] instrument in 119 pediatric patients with burns (age: 6 months-16 years; 58.8% boys) in the Netherlands. In order to identify whether functional independence was affected, participants' total scores on the WeeFIM[R] instrument were compared to American norm values. Of the participants assessed at 2 weeks post burn (n = 117), 3 months post burn (n = 68) and/or 6 months post burn (n = 38), 22, 9 and 9 participants showed affected performance, respectively. Improvements in WeeFIM[R] total scores for the total study population between 2 weeks and 6 months post burn were significant (Wilcoxon T = 2.5; p less than 0.001, effect size = -0.59). Individual improvements were found to be significant for 30.3% of the assessed participants between 2 weeks and 3 months post burn, and for 12.1% between 3 and 6 months post burn. This study is unique in providing data on functional independence for this large and special population. However, a proportion of participants were lost to follow-up and the use of the WeeFIM[R] instrument in this specific population and setting has its limitations. To conclude, burn injury impacts functional independence in children, yet the vast majority of Dutch pediatric patients with burns returns to functional independence typical for age within 6 months post burn. (Contains 5 tables and 3 figures.)

Background: The number of reliable and valid instruments to measure the effects of therapy in apraxia of speech (AoS) is limited. Aims: To evaluate the newly developed Modified Diadochokinesis Test (MDT), which is a task to assess the effects of rate and rhythm therapies for AoS in a multiple baseline across behaviours design. Methods: The consistency, accuracy and fluency of speech of 24 adults with AoS and 12 unaffected speakers matched for age, gender and educational level were assessed using the MDT. The reliability and validity of the instrument were considered and outcomes compared with those obtained with existing tests. Results: The results revealed that MDT had a strong internal consistency. Scores were influenced by syllable structure complexity, while distinctive features of articulation had no measurable effect. The test-retest and intra- and inter-rater reliabilities were shown to be adequate, and the discriminant validity was good. For convergent validity different outcomes were found: apart from one correlation, the scores on tests assessing functional communication and AoS correlated significantly with the MDT outcome measures. The spontaneous speech phonology measure of the Aachen Aphasia Test (AAT) correlated significantly with the MDT outcome measures, but no correlations were found for the repetition subtest and the spontaneous speech articulation/prosody measure of the AAT. Conclusions & Implications: The study shows that the MDT has adequate psychometric properties, implying that it can be used to measure changes in speech motor control during treatment for apraxia of speech. The results demonstrate the validity and utility of the instrument as a supplement to speech tasks in assessing speech improvement aimed at the level of planning and programming of speech. (Contains 8 tables and 1 note.)

Motor learning interventions for children with cerebral palsy (CP) that elicit relatively permanent and transferable improvements in motor skill capability are essential. Knowledge is needed about the augmented feedback forms that most effectively promote this. This review aims to collect and analyze the current evidence for the effectiveness of different forms of feedback for motor learning in children with CP to improve motor task performance. PubMed, PsycInfo, and Cochrane Library were searched to identify relevant studies. Studies were included if (1) they were conducted in children with CP or compared children with CP to TD children and (2) a form of augmented feedback related to a motor task was administered. Initially, 401 records were identified for screening. Ultimately, 12 articles were included in the review. The evidence thus far supports the expectancy that children with CP generally benefit from feedback provided during or after performing a movement task. Due to the heterogeneity of existing studies, it is difficult to draw firm conclusions regarding relative effectiveness of feedback forms. This review showed that more high-quality research is warranted on the effectiveness of specific feedback forms on motor learning in children with CP. Children with CP benefit from several forms of knowledge of performance or knowledge of results feedback provided during or after performing a movement task. Feedback should not be provided with every performed trial. Feedback frequency can best be reduced by letting children determine after which trials they want feedback. Learning curves under similar feedback conditions varied largely between children, warranting tailor-made forms of feedback to be applied during motor learning and rehabilitation. [ABSTRACT FROM AUTHOR]

Background: Pain and disability are important components of the assessment of hand problems, but it is unknown how physician estimates compare to patient self‐reports. Objective: To analyse differences between patient‐reported and physician‐estimated pain and disability in patients with hand or wrist disorders and to analyse factors influencing these differences. Methods: Observational study of patients with hand or wrist disorders seen during multidisciplinary outpatient consultations. Patients, rehabilitation medicine (RM) consultants, RM trainees and plastic surgeons completed visual analogue scales (VASs) to rate the level of self‐reported (patients) or estimated (physicians) pain and disability. Multilevel analyses were performed to evaluate differences in VAS‐pain and VAS‐disability scores between patients and physicians and to evaluate the influences of diagnosis, physician experience and medical specialty. Results: Complete data were obtained for 250 patients. Levels of pain and disability estimated by physicians were lower compared to patient self‐reports. Ratings differed among medical specialties. Pain was underestimated to a greater extent by plastic surgeons compared to RM consultants. Disability was underestimated to a greater extent by RM consultants compared to plastic surgeons. Estimates of pain and disability did not differ between consultants and trainees in RM. Type of diagnosis did not influence the degree of underestimation of pain and disability. Conclusions: Physicians underestimate pain and disability compared to self‐reports in patients with hand or wrist disorders. Ratings differ among medical specialties: plastic surgeons underestimate pain more, while RM consultants underestimate disability more. Physician experience and diagnosis do not influence the degree of underestimation of pain and disability. [ABSTRACT FROM AUTHOR]

Background: Receiving a diagnosis can have a major impact on the child and its family. Parental satisfaction concerning the diagnostic trajectory is important with regard to acceptance and coping with their child's problems. Our aim was to describe the diagnostic trajectory of developmental coordination disorder (DCD) in the Netherlands and identify factors that are related to parents' satisfaction. Method: Mothers of 60 children with a DCD diagnosis completed an online survey concerning their experiences during and after the diagnostic trajectory of obtaining this diagnosis. Results: Forty percent of the mothers rated the diagnostic trajectory towards a DCD diagnosis as stressful and 47% rated the knowledgeability of the first professional they consulted (mostly a general practitioner, paediatric physical therapist, or youth health care physician) as having no or just superficial knowledge about DCD. Around 60% of the mothers described a lack of knowledge and support at their child's school after receiving the diagnosis. Notwithstanding this, the majority of the participating mothers was (very) satisfied with the diagnostic trajectory. Higher appreciation of both the manner of the diagnosing professional and the post‐diagnostic support provided were predictive of higher satisfaction. Conclusions: Our results underline the importance of improving the knowledgeability in primary schools and primary health care professionals with regard to DCD. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Abstract Background Persons with cerebral palsy (CP) are at risk for developing an inactive lifestyle and often have poor fitness levels, which may lead to secondary health complications and diminished participation and quality of life. However, persons with CP also tend not to receive structural treatment to improve physical activity and fitness in adolescence, which is precisely the period when adult physical activity patterns are established. Methods We aim to include 60 adolescents and young adults (16-24 years) with spastic CP. Participants will be randomly assigned to an intervention group or a control group (no treatment; current policy). The intervention will last 6 months and consist of three parts; 1) counselling on daily physical activity; 2) physical fitness training; and 3) sports advice. To evaluate the effectiveness of the intervention, all participants will be measured before, during, directly after, and at 6 months following the intervention period. Primary outcome measures will be: 1) physical activity level, which will be measured objectively with an accelerometry-based activity monitor during 72 h and subjectively with the Physical Activity Scale for Individuals with Physical Disabilities; 2) aerobic fitness, which will be measured with a maximal ramp test on a bicycle or armcrank ergometer and a 6-minute walking or wheelchair test; 3) neuromuscular fitness, which will be measured with handheld dynamometry; and 4 body composition, which will be determined by measuring body mass, height, waist circumference, fat mass and lipid profile. Conclusions This paper outlines the design, methodology and intervention of a multicenter randomized controlled trial (LEARN 2 MOVE 16-24) aimed at examining the effectiveness of an intervention that is intended to permanently increase physical activity levels and improve fitness levels of adolescents and young adults with CP by achieving a behavioral change toward a more active lifestyle. Trial registration Dutch Trial Register; NTR1785

Abstract Background It is widely accepted that infants at risk for cerebral palsy need paediatric physiotherapy. However, there is little evidence for the efficacy of physiotherapeutic intervention. Recently, a new intervention program, COPCA (Coping with and Caring for infants with special needs - a family centered program), was developed. COPCA has educational and motor goals. A previous study indicated that the COPCA-approach is associated with better developmental outcomes for infants at high risk for developmental disorders. LEARN 2 MOVE 0-2 years evaluates the efficacy and the working mechanisms of the COPCA program in infants at very high risk for cerebral palsy in comparison to the efficacy of traditional infant physiotherapy in a randomized controlled trial. The objective is to evaluate the effects of both intervention programs on motor, cognitive and daily functioning of the child and the family and to get insight in the working elements of early intervention methods. Methods/design Infants are included at the corrected age of 1 to 9 months and randomized into a group receiving COPCA and a group receiving traditional infant physiotherapy. Both interventions are given once a week during one year. Measurements are performed at baseline, during and after the intervention period and at the corrected age of 21 months. Primary outcome of the study is the Infant Motor Profile, a qualitative evaluation instrument of motor behaviour in infancy. Secondary measurements focus on activities and participation, body functions and structures, family functioning, quality of life and working mechanisms. To cope with the heterogeneity in physiotherapy, physiotherapeutic sessions are video-recorded three times (baseline, after 6 months and at the end of the intervention period). Physiotherapeutic actions will be quantified and related to outcome. Discussion LEARN 2 MOVE 0-2 years evaluates and explores the effects of COPCA and TIP. Whatever the outcome of the project, it will improve our understanding of early intervention in children with cerebral palsy. Such knowledge is a prerequisite for tailor-made guidance of children with CP and their families. Trial registration The trial is registered under NTR1428.

Abstract Background Regular participation in physical activities is important for all children to stay fit and healthy. Children with cerebral palsy have reduced levels of physical activity, compared to typically developing children. The aim of the LEARN 2 MOVE 7-12 study is to improve physical activity by means of a physical activity stimulation program, consisting of a lifestyle intervention and a fitness training program. Methods/Design This study will be a 6-month single-blinded randomized controlled trial with a 6-month follow up. Fifty children with spastic cerebral palsy, aged 7 to 12 years, with Gross Motor Function Classification System levels I-III, will be recruited in pediatric physiotherapy practices and special schools for children with disabilities. The children will be randomly assigned to either the intervention group or control group. The children in the control group will continue with their regular pediatric physiotherapy, and the children in the intervention group will participate in a 6-month physical activity stimulation program. The physical activity stimulation program consists of a 6-month lifestyle intervention, in combination with a 4-month fitness training program. The lifestyle intervention includes counseling the child and the parents to adopt an active lifestyle through Motivational Interviewing, and home-based physiotherapy to practise mobility-related activities in the daily situation. Data will be collected just before the start of the intervention (T0), after the 4-month fitness training program (T4), after the 6-month lifestyle intervention (T6), and after six months of follow-up (T12). Primary outcomes are physical activity, measured with the StepWatch Activity Monitor and with self-reports. Secondary outcomes are fitness, capacity of mobility, social participation and health-related quality of life. A random coefficient analysis will be performed to determine differences in treatment effect between the control group and the intervention group, with primary outcomes and secondary outcomes as the dependent variables. Discussion This is the first study that investigates the effect of a combined lifestyle intervention and fitness training on physical activity. Temporary effects of the fitness training are expected to be maintained by changes to an active lifestyle in daily life and in the home situation. Trial registration This study is registered in the Dutch Trial Register as NTR2099.

Abstract Background Little is known about the efficacy and the working mechanisms of physical and occupational therapy interventions for children with cerebral palsy (CP). In recent years a shift from a child-focused intervention approach to a more context-focused intervention approach can be recognized. Until now the evidence on the efficacy and the working mechanisms of these interventions for children with CP is inconclusive. This study aims to evaluate the efficacy and working mechanisms of two intervention approaches compared to regular care intervention in improving mobility and self-care skills of children (2-3 years) with CP and their families: a child-focused intervention approach and a context-focused intervention approach. Methods/Design A multi-centre, randomized controlled trial research design will be used. Ninety-four children with CP (Gross Motor Function Classification System (GMFCS) level I-IV; age 2 to 3 years), their parents, and service providers (physical and occupational therapists) will be included. During a period of six months children will receive child-focused, context-focused or regular care intervention. Therapists will be randomly assigned to deliver either a child-focused intervention approach, a context-focused intervention approach or regular care intervention. Children follow their therapist into the allocated intervention arm. After the six months study-intervention period, all participants return to regular care intervention. Outcomes will be evaluated at baseline, after six months and at a three months follow-up period. Primary outcome is the capability of functional skills in self-care and mobility, using the Functional Skills Scale of the Pediatric Evaluation of Disability Inventory (PEDI). Other outcomes will be quality of life and the domains of the International Classification of Functioning, Disability and Health - for Children and Youth (ICF-CY), including body function and structure, activities (gross motor capacity and performance of daily activities), social participation, environmental variables (family functioning, parental empowerment). Discussion This paper presents the background information, design, description of interventions and protocol for this study on the efficacy and working mechanisms of child-focused intervention approach and context-focused intervention approach compared to regular care intervention in mobility and self-care skills of children (2-3 years) with CP. Trial registration This study is registered in the Dutch Trial Register as NTR1900

Purpose: Evidence for efficacy of early intervention in infants at high risk of cerebral palsy (CP) is limited. We compared outcome of infants at very high risk of CP after receiving the family centered program COPing with and CAring for infants with special needs (COPCA) or typical infant physiotherapy. Materials and methods: Forty-three infants were randomly assigned before the corrected age of 9 months to 1 year of COPCA (n = 23) or typical infant physiotherapy (n = 20). Neuromotor development, cognition, and behavior was assessed until 21 months corrected age. Video-recorded physiotherapy sessions were quantitatively analyzed for further process analyses. Outcome was evaluated with nonparametric tests and linear mixed effect models. Results: During and after the interventions, infant outcome in both intervention groups was similar [primary outcome Infant Motor Profile: COPCA 82 (69–94), typical infant physiotherapy 81 (69–89); Hodges Lehman estimate of the difference 0 (confidence interval −5;4)]. Outcome was not associated with contents of intervention. Conclusions: One year of COPCA and 1 year of typical infant physiotherapy in infants at high risk of CP resulted in similar neurodevelopmental outcomes. It is conceivable that combinations of active ingredients from different approaches are needed for effective early intervention. For infants at very high risk of cerebral palsy, 1 year of intervention with the family-centred programme Coping with and Caring for infants with special needs resulted in similar infant outcome as 1 year of typical infant physiotherapy. Infant's neuromotor, cognitive, and behavioural outcome was not associated with specific interventional elements, implying that the various elements may have a similar effect on developmental outcome. We suggest that a specific mix of ingredients of different approaches may work best, resulting in comprehensive care including both infant and family needs. [ABSTRACT FROM AUTHOR]

Purpose: To compare family and functional outcome in infants at very high risk of cerebral palsy, after receiving the family centred programme "Coping with and Caring for infants with special needs (COPCA)" or typical infant physiotherapy. Materials and methods: Forty-three infants at very high risk were included before 9 months corrected age and randomly assigned to one year COPCA (n = 23) or typical infant physiotherapy (n = 20). Family and infant outcome were assessed before and during the intervention. Physiotherapy intervention sessions were analysed quantitatively for process analysis. Outcome was evaluated with non-parametric tests and linear mixed-effect models. Results: Between-group comparisons revealed no differences in family and infant outcomes. Within-group analysis showed that family's quality of life improved over time in the COPCA-group. Family empowerment was positively associated with intervention elements, including "caregiver coaching." Conclusions: One year of COPCA or typical infant physiotherapy resulted in similar family and functional outcomes. Yet, specific intervention elements, e.g., coaching, may increase empowerment of families of very high risk infants and may influence quality of life, which emphasizes the importance of family centred services. One year of the family centred programme "Coping with and a Caring for infants with special needs" compared with typical infant physiotherapy resulted in similar family outcome and similar functional outcome for the infants at very high risk for cerebral palsy. Specific contents of intervention, such as caregiver coaching, are associated with more family empowerment and increased quality of life. Emphasis on family needs is important in early intervention for infants at very high risk for cerebral palsy. [ABSTRACT FROM AUTHOR]

Purpose: The Lokomat is a commercially available robotic gait trainer, applied for gait rehabilitation in post-stroke hemiparetic patients. Selective and well-dosed clinical use of the Lokomat training parameters, i.e. guidance, speed and bodyweight support, requires a good understanding of how these parameters affect the neuromuscular control of post-stroke hemiparetic gait. Materials and methods: Ten stroke patients (unilateral paresis, 7 females, 64.5 ± 6.4 years, >3months post-stroke, FAC scores 2–4)) walked in the Lokomat under varying parameter settings: 50% or 100% guidance, 0.28 or 0.56m/s, 0% or 50% bodyweight support. Electromyography was recorded bilaterally from Gluteus Medius, Biceps Femoris, Vastus Lateralis, Medial Gastrocnemius, and Tibialis Anterior. Pressure sensors placed under the feet were used to determine the level of temporal gait symmetry. Results: Varying guidance and bodyweight support had little effect on muscle activity, but increasing treadmill speed led to increased activity in both the affected (Biceps Femoris, Medial Gastrocnemius, Tibialis Anterior) and unaffected leg (all muscles). The level of temporal symmetry was unaffected by the parameter settings. Conclusions: The Lokomat training parameters are generally ineffective in shaping short term muscle activity and step symmetry patients with hemiparetic stroke, as speed is the only parameter that significantly affects muscular amplitude. Trial Registration: d.n.a. The Lokomat is a commercially available gait trainer that can be used for gait rehabilitation in post-stroke hemiparetic patients. This study shows that muscle amplitude is generally low during Lokomat guided walking, and that treadmill Speed is the main training parameter to influence muscular output in stroke patients during Lokomat walking. Varying Guidance and Bodyweight Support within a clinical relevant range barely affected muscle activity, and temporal step symmetry was unaffected by variation in any of the training parameters. Based on the findings it is advised to increase speed as early as possible during Lokomat therapy, or use other means (e.g. feedback or instructions) to stimulate active involvement of patients during training. [ABSTRACT FROM AUTHOR]