Relationship between sensory processing patterns and gross motor function of children and adolescents with Down syndrome and typical development: a cross-sectional study.

BACKGROUND: Children and adolescents with Down syndrome (DS) may experience impairments in sensory and motor skills that can be interrelated. The purposes of this study were (i) to compare the sensory processing patterns and gross motor function between children and adolescents with DS and with typical development (TD) and (ii) to explore associations between these areas in both DS and TD groups. METHOD: This cross-sectional study involved a sample size of 25 participants with DS (mean age 10.24 ± 2.04 years) and 25 participants with TD (mean age 10.04 ± 2.82 years). The sensory processing patterns were assessed using the Sensory Profile Second Version questionnaire, and the gross motor function was measured with the Gross Motor Function Measure (GMFM-88) dimensions (D) standing, and (E) walking, running, and jumping. Differences between groups were tested using the Mann-Whitney test, and the relationship between the variables was examined using Spearman's correlation tests, with a significance level set at 5%. RESULTS: Children with DS showed greater difficulties with sensory processing than TD children in Seeker (P < 0.001), Avoider (P < 0.001), Sensitivity (P < 0.001), Registration (P < 0.001), Auditory (P < 0.001), Touch (P = 0.001), Movements (P = 0.001), Oral (P = 0.028), Conduct (P = 0.005), Socioemotional (P < 0.001), and Attentional (P < 0.001) domains. Additionally, children with DS presented lower gross motor function than TD in GMFM-88, standing (P < 0.001) and walking, running, and jumping (P < 0.001). Correlations were found between greater difficulties with sensory processing in Touch and lower gross motor function in walking, running, and jumping for the DS group. CONCLUSION: Our results suggest there are more difficulties in sensory processing patterns and gross motor function in children with DS than in TD. Also, there is a single association between more difficulties in sensory processing and less well-developed motor function in the DS group. Therefore, a comprehensive assessment of all these aspects should be performed in children and adolescents with DS, along with the provision of relevant interventions addressing specific needs.

Matching One Sample According to Two Criteria in Observational Studies.

Multivariate matching has two goals: (i) to construct treated and control groups that have similar distributions of observed covariates, and (ii) to produce matched pairs or sets that are homogeneous in a few key covariates. When there are only a few binary covariates, both goals may be achieved by matching exactly for these few covariates. Commonly, however, there are many covariates, so goals (i) and (ii) come apart, and must be achieved by different means. As is also true in a randomized experiment, similar distributions can be achieved for a high-dimensional covariate, but close pairs can be achieved for only a few covariates. We introduce a new polynomial-time method for achieving both goals that substantially generalizes several existing methods; in particular, it can minimize the earthmover distance between two marginal distributions. The method involves minimum cost flow optimization in a network built around a tripartite graph, unlike the usual network built around a bipartite graph. In the tripartite graph, treated subjects appear twice, on the far left and the far right, with controls sandwiched between them, and efforts to balance covariates are represented on the right, while efforts to find close individual pairs are represented on the left. In this way, the two efforts may be pursued simultaneously without conflict. The method is applied to our on-going study in the Medicare population of the relationship between superior nursing and sepsis mortality. The match2C package in R implements the method.

Polychlorinated biphenyls, polychlorinated dibenzo-p-dioxins, polychlorinated dibenzofurans, pesticides, and diabetes in the Anniston Community Health Survey follow-up (ACHS II): single exposure and mixture analysis approaches.

Dioxins and dioxin-like compounds measurements were added to polychlorinated biphenyls (PCBs) and organochlorine pesticides to expand the exposure profile in a follow-up to the Anniston Community Health Survey (ACHS II, 2014) and to study diabetes associations. Participants of ACHS I (2005-2007) still living within the study area were eligible to participate in ACHS II. Diabetes status (type-2) was determined by a doctor's diagnosis, fasting glucose ≥125 mg/dL, or being on any glycemic control medication. Incident diabetes cases were identified in ACHS II among those who did not have diabetes in ACHS I, using the same criteria. Thirty-five ortho-substituted PCBs, 6 pesticides, 7 polychlorinated dibenzo-p-dioxins (PCDD), 10 furans (PCDF), and 3 non-ortho PCBs were measured in 338 ACHS II participants. Dioxin toxic equivalents (TEQs) were calculated for all dioxin-like compounds. Main analyses used logistic regression models to calculate odds ratios (OR) and 95 % confidence intervals (CI). In models adjusted for age, race, sex, BMI, total lipids, family history of diabetes, and taking lipid lowering medication, the highest ORs for diabetes were observed for PCDD TEQ: 3.61 (95 % CI: 1.04, 12.46), dichloro-diphenyl dichloroethylene (p,p'-DDE): 2.07 (95 % CI 1.08, 3.97), and trans-Nonachlor: 2.55 (95 % CI 0.93, 7.02). The OR for sum 35 PCBs was 1.22 (95 % CI: 0.58-2.57). To complement the main analyses, we used BKMR and g-computation models to evaluate 12 mixture components including 4 TEQs, 2 PCB subsets and 6 pesticides; suggestive positive associations for the joint effect of the mixture analyses resulted in ORs of 1.40 (95% CI: -1.13, 3.93) for BKMR and 1.32 (95% CI: -1.12, 3.76) for g-computation. The mixture analyses provide further support to previously observed associations of trans-Nonachlor, p,p'- DDE, PCDD TEQ and some PCB groups with diabetes.

Impact of "early intervention" parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study.

PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. RESULTS: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers. CONCLUSIONS: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.

Glycerin suppositories used prophylactically in premature infants (supp): A pilot randomized controlled trial.

BACKGROUND: Glycerin suppositories are often used to facilitate meconium evacuation in premature infants. The evidence for this practice is inconclusive. The purpose of this study was to assess the feasibility of a multicenter randomized controlled trial on the effectiveness of this treatment strategy. STUDY DESIGN: We conducted an external pilot study for a multicenter randomized controlled trial of premature infants randomized to glycerin suppositories or placebo procedure. Participants were included if they were gestational age of 24 weeks 0 days to 31 weeks 6 days and/or birthweight of 500 to 1500 grams. We excluded infants with life-threatening congenital anomalies, contraindications to receiving suppositories, or signs of clinical instability. Outcomes included cost, recruitment, and treatment-related adverse events. RESULT: A total of 109 were screened, 79 were initially eligible, and 34 consented to participate. Four of these infants were excluded prior to randomization due to thrombocytopenia, 30 were randomized, and 26 reached full enteral feeds. Three infants (10%) experienced rectal bleeding 5 to 43 days after completing study treatments. An anal fissure was noted in two of these patients. There were no cases of rectal perforation but one infant assigned to active treatment developed necrotizing enterocolitis. CONCLUSIONS: Conducting a multicenter randomized controlled trial on the use of glycerin suppositories in premature infants is feasible. Minor modifications to the study protocol are needed to increase participant recruitment and simplify the administration of study treatments.

Is a family-centred initiative a family-centred service? A case of a Conductive Education setting for children with cerebral palsy.

BACKGROUND: From the moment a child is diagnosed as having cerebral palsy, families have to cope on a daily basis with the multifaceted challenges of life-long disability management. Family-centred service is embraced as a 'best practice' model because of accumulating evidence supporting its positive influence on parents and children's outcomes. Nevertheless, research comparing parent and provider perspectives on family-centred practices of educational service providers in education settings is scarce. The aims of this study were to compare the extent to which parents and conductors experience the service delivery in Tsad Kadima, the Association for Conductive Education in Israel, as being family-centred, as well as comparing parents' perception of different educational settings as being family-centred. METHODS: Measurements of family-centeredness, the Israeli Measure of Processes of Care for families (MPOC-20) and for service providers (MPOC-SP), were administrated to 38 teacher conductors and 83 families of children with cerebral palsy (aged 1-14), from different conductive educational settings. RESULTS: Parents and conductors perceive Conductive Education service as being highly family centred in most domains, rating respectful and supportive care the highest and providing general information the lowest, thus indicating an area where improvements should be made. Parents perceived the service they receive to be more family-centred than conductor's perception about their own activities. In addition, educational setting (day care, pre-school and school) was found to be associated with parent's scores. CONCLUSIONS: The current study, which is the first to examine family-centred service provision in a conductive special education setting, from the perspectives of both parents and conductors, provides significant evidence for high-quality services in these settings.

About my Child: measuring 'Complexity' in neurodisability. Evidence of reliability and validity.

BACKGROUND: About my Child, 26-item version (AMC-26) was developed as a measure of child health 'complexity' and has been proposed as a tool for understanding the functional needs of children and the priorities of families. METHODS: The current study investigated the reliability and validity of AMC-26 with a sample of caregivers of children with neurodevelopmental disorders (NDD; n = 258) who completed AMC-26 as part of a larger study on parenting children with NDD. A subsample of children from the larger study (n = 49) were assessed using standardized measures of cognitive and adaptive functioning. RESULTS: Factor analysis revealed that a four-component model explained 51.12% of the variance. Cronbach's alpha was calculated for each of the four factors and for the scale as a whole, and ranged from 0.75 to 0.85, suggesting a high level of internal consistency. Construct validity was tested through comparisons with the results of standardized measures of child functioning. Predicted relationships for factors one, two and three were statistically significant and in the expected directions. Predictions for factor four were partially supported. AMC-26 was also expected to serve as an indicator of caregiver distress. Drawing on a sample of caregivers from the larger study (n = 251) the model was found to be significant and explained 23% of the variance in caregiver depressive symptoms (R(2) = .053, F (1, 249) = 14.06, P < .001). CONCLUSIONS: Based on these observations, the authors contend that AMC-26 may be used by clinicians and researchers as a tool to capture child function and child health complexity. Such a measure may help elucidate the relationships between child complexity and family well-being. This is an important avenue for further investigation.

Pre-menarcheal physical activity predicts post-menarcheal lean mass and core strength, but not fat mass.

OBJECTIVES: Youth exercise is associated with improved body composition, but details regarding timing and persistence are limited. We examined pre- and circum-menarcheal organized physical activity exposure (PA) as a factor in development of early post-menarcheal lean mass, fat mass and muscle strength. METHODS: Participants in a longitudinal study of musculoskeletal growth using dual energy X-ray absorptiometry (DXA) were included based on: 1) Whole body DXA scans: 0.5-1.5 years pre-menarche, 0.5-1.5 years post-menarche; 2) PA records for ⋝6 months preceding the first DXA (prePA) and for the inter-DXA interval (circumPA). Dominant arm grip strength and sit-ups tests coincided with DXA scans; PA, height and maturity were recorded semi-annually. Regressions correlated PA with lean mass/fat mass/strength, accounting for maturity, body size, and baseline values. RESULTS: Seventy girls [baseline: 11.8 yrs (sd 1.0), follow-up: 13.9 years (sd 1.0)] demonstrated circum-menarcheal gains of 25-29% for lean and fat mass and 33% for grip strength. PREPA correlated with pre- and post-menarcheal lean mass, sit-ups and pre-menarcheal fat mass (p<0.05), but not grip strength. CIRCUMPA correlated with only post-menarcheal sub-head lean mass (p=0.03). CONCLUSIONS: Lean mass and core strength at 1-year post-menarche were more strongly predicted by pre-menarcheal organized PA than by recent circum-menarcheal PA.

Arm bone loading index predicts DXA musculoskeletal outcomes in two samples of post-menarcheal girls.

OBJECTIVE: A site-specific bone loading index was developed to predict post-menarcheal arm bone mass, geometry, areal density and non-bone lean mass using organized activity records. METHODS: Two cohorts of post-menarcheal girls (A= 55, B= 48) met analysis inclusion criteria: (1) Whole body and non-dominant radius DXA scans +1.0 to +2.6 years post-menarche; (2) detailed, organized activity records available for 36 months prior to the focal DXA scan; (3) accompanying anthropometric data. DXA non-dominant arm and radius regions of interest (1/3, Ultradistal (UD)) were evaluated. An arm bone loading index (arm totBLI) was developed and refined to describe >50 activities. Separate regression analyses for Cohorts A&B tested explanatory value of arm totBLI for DXA outcomes, accounting for gynecological age, height and whole body non-bone lean mass. RESULTS: In both cohorts, arm totBLI reflecting 3 years of peri-menarcheal activity exposure exhibited strong explanatory value for post-menarcheal radius and arm outcomes (squared semi-partial r =0.07-0.34, p<0.05), except Arm Area. For both cohorts and most outcomes, arm totBLI explained significant variance, even after adjusting for local muscle mass. CONCLUSIONS: In two independent cohorts, arm totBLI may consistently indicate osteogenic and sarcogenic properties of represented activities; additional research is necessary for further refinement and validation.

Knowledge mobilization to spread awareness of the 'F-words' in childhood disability: lessons from a family-researcher partnership.

BACKGROUND: In 2012, two CanChild researchers published an article in Child: Care, Health and Development titled 'The "F-words" in childhood disability: I swear this is how we should think!' Building on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework, the article featured key strengths-based ICF themes (i.e. the 'F-words' - Function, Family, Fitness, Fun, Friends and Future). This paper reports on a knowledge mobilization initiative designed to spread awareness of the 'F-words' ideas. METHODS: Families and researchers collaborated to develop, disseminate and evaluate an online awareness video. The video used written descriptions, parents' reflections and their pictures, music and graphics to captivate the audience. Posted on the CanChild website in May 2014, information about the video was distributed via various dissemination strategies and evaluated by tracking its views and through an online survey. RESULTS: After a 2-month evaluation, there were 715 views and 137 survey responses. Of the survey responses, 89% lived in Canada, 55% had not previously heard of the 'F-words', 98% 'extremely liked'/'liked the ideas' and 88% indicated they would share the video. CONCLUSIONS: By creating a short and captivating video, we were able to spread awareness to a wide audience in a short period of time. Engaging families throughout the project was critical to the success of the video. By working together, we hope to continue bridging research and practice and moving the 'F-words' concepts forward one 'word' at a time.

Mothers' and health care providers' perspectives of the barriers and facilitators to attendance at Canadian neonatal follow-up programs.

BACKGROUND: Despite the benefits of Neonatal Follow-Up (NFU) programs for infants at risk for developmental problems subsequent to preterm birth, non-attendance continues to be a problem within Canada and beyond. This study investigated the barriers and facilitators to attendance at Canadian NFU programs from mothers' and health care providers' (HCP) perspectives. METHODS: In this multi-site qualitative descriptive study, we conducted semi-structured individual interviews with 12 mothers, six from each of two NFU programs; and focus groups with 20 HCPs from nine NFU programs. Interviews were audio-recorded and transcribed and then subjected to thematic analysis. RESULTS: The predominant barriers represented a complex interplay of cumulative factors: mothers' isolation and feeling overwhelmed, with limited support, experiencing difficulty attending because of limited resources, who viewed NFU as not needed until problems arose for their child. Other barriers included vulnerability and fear of bad news. Mothers reported the need to protect their vulnerable child from risks, whereas HCPs reported creating vulnerability by monitoring the child's development over time. HCPs perceived fear of bad news as a barrier, whereas mothers viewed that impending bad news increased their need to attend to address the issue. The predominant facilitators were support, family centred-care and mothers with adequate resources. CONCLUSIONS: Attendance is most problematic for mothers with limited support, capacity and resources. First and foremost, targeted approaches to NFU service provision are needed to address the cumulative barriers and improve experiences for mothers who find it difficult to attend NFU. A continuous relationship with a single point of contact is needed and merits further investigation - a provider who works across the traditional silos of neonatal intensive care, NFU and community services, minimizes duplication and navigates transitions.

Development and implementation of a paediatric rehabilitation care path for hard-to-reach families: a case report.

Service providers, policy makers and researchers are increasingly concerned with service provisions for hard-to-reach families. These are defined as families who are eligible for a service, but are difficult for service providers to identify or engage. In our setting, hard-to-reach families were those who missed appointments without prior notice, a problem that was inefficient for the organization, frustrating for clinicians and did not meet child or family needs. This case report describes the development of a care path to promote engagement with hard-to-reach families (MATCH: Making Alternative Therapy Choices Happen) and its adoption among clinicians within a community-based paediatric rehabilitation centre in Ontario, Canada. The care path was developed and implemented at a pilot site at KidsAbility Centre for Child Development (KidsAbility), which allowed us to tailor the care path using clinician input via questionnaires, and to monitor use of the care path. Following pilot implementation clinicians reported being satisfied with the approach and perceived improved child and family outcomes. The care path was expanded to four service sites using a Knowledge Brokering model. After training, clinicians reported a good understanding of the care path: 87% felt that they would have an opportunity to use it within six months, however only 68% felt ready to use it. Challenges to offering MATCH and continuing training preferences were investigated. The MATCH care path illustrates a practical application of the principles of best-practice for engaging hard-to-reach families, tailored for a specific paediatric rehabilitation setting. Continued research is planned to further define the hard-to-reach families within paediatric rehabilitation, determine how hard-to-reach families view engagement in services, and evaluate the effectiveness of MATCH implementation in reducing missed appointments and promoting family engagement in paediatric rehabilitation services.

Environmental relative moldiness index and associations with home characteristics and infant wheeze.

Possible relationships between mold contamination, as described by the Environmental Relative Moldiness Index (ERMI), home characteristics, and the development of wheeze in the first year of life were evaluated among a cohort of urban infants (n = 103) in Syracuse, New York. Pregnant women with a history of asthma were recruited in 2001-2002 for the "Assessment of Urban Dwellings for Indoor Toxics" (AUDIT) study. When the infants were approximately 3 months of age, a home inspection was carried out and indoor environmental samples collected, including vacuumed house dust. ERMI levels in the Syracuse cohort homes were higher than the U.S. average, with an overall mean of 11.4. ERMI levels were significantly higher in homes with visible water problems (p = 0.023) and visible mold (p = 0.023). ERMI levels in apartments were significantly lower than the values measured in houses (p = 0.0003). While infants experiencing wheeze (38%) tended to live in homes with higher ERMI values than those without wheeze (ERMI values of 12.3 and 10.9, respectively), the differences did not reach statistical significance. A subset analysis limited to infants with living room samples who remained in the same home during the study (n = 25) was suggestive of an association between higher ERMI values and wheeze (p = 0.10). In summary, the ERMI is a standardized metric which allows for comparison of moldiness levels in homes across studies and regions in the United States. ERMI levels in Syracuse homes were skewed to the high end of the national scale. Higher ERMI levels were indicators of water problems, mold, and type of housing.

Endometriosis: Survey of Current Diagnostic and Therapeutic Options and Latest Research Work.

Endometriosis is one of the most frequent benign diseases in women of child-bearing age. The main symptoms are chronic upper abdominal pain and infertility. However, the aetiology and pathogenesis of endometriosis are as yet insufficiently clarified. Thus, therapy is mainly symptomatic with laparoscopic surgery being the gold standard. The aim of drug therapy is to achieve a hypo-oestrogenic condition. In cases of severe endometriosis and a desire to have children there is often an indication for assisted reproduction. The present article illustrates almost all current aspects on the diagnosis of and therapy of endometriosis. From the clinical viewpoint, emphasis is placed on the rare cases of deeply infiltrating endometriosis that are, however, accompanied with a high morbidity. Current therapeutic options in cases of infertility are also presented in more detail. Furthermore, special attention is paid to the latest research results from both clinical and basic research fields in order to demonstrate our current knowledge on the pathogenesis and, where possible, potentially related therapeutic options.

Mortality and cardiovascular disease among older live kidney donors.

Over the past two decades, live kidney donation by older individuals (≥55 years) has become more common. Given the strong associations of older age with cardiovascular disease (CVD), nephrectomy could make older donors vulnerable to death and cardiovascular events. We performed a cohort study among older live kidney donors who were matched to healthy older individuals in the Health and Retirement Study. The primary outcome was mortality ascertained through national death registries. Secondary outcomes ascertained among pairs with Medicare coverage included death or CVD ascertained through Medicare claims data. During the period from 1996 to 2006, there were 5717 older donors in the United States. We matched 3368 donors 1:1 to older healthy nondonors. Among donors and matched pairs, the mean age was 59 years; 41% were male and 7% were black race. In median follow-up of 7.8 years, mortality was not different between donors and matched pairs (p = 0.21). Among donors with Medicare, the combined outcome of death/CVD (p = 0.70) was also not different between donors and nondonors. In summary, carefully selected older kidney donors do not face a higher risk of death or CVD. These findings should be provided to older individuals considering live kidney donation.

Maternal and infant predictors of attendance at Neonatal Follow-Up programmes.

BACKGROUND: Neonatal Follow-Up (NFU) programmes provide health services for families of infants at high risk of developmental problems following difficult or extremely premature birth: yet, up to 30% of families do not attend these programmes with their infants. METHODS: The study objective was to determine maternal and infant factors that predicted attendance at NFU programmes. Utilizing Andersen's Behavioural Model of Health Services Use, a prospective two-phase multi-site descriptive cohort study was conducted in three Canadian Neonatal Intensive Care Units (NICU) that refer to two affiliated NFU programmes. In Phase 1, 357 mothers completed standardized questionnaires that addressed maternal and infant factors, prior to their infants' NICU discharge. In Phase 2, attendance at NFU was followed at three time points over a 12-month period. Factors of interest included predisposing factors (e.g. demographic characteristics and social context); enabling factors (e.g. social support, travel distance, and income); and infant illness severity (i.e. needs factors). Multivariate logistic regression was used to estimate the odds ratio for each independent factor. RESULTS: Mothers parenting alone, experiencing higher levels of worry about maternal alcohol or drug use, or at greater distances from NFU were less likely to attend. Mothers experiencing higher maternal stress at the time of the infant's NICU hospitalization were more likely to attend NFU. No infant factors were predictive of NFU attendance. CONCLUSIONS: Mothers at risk of not attending NFU programmes with their infants require better identification, triage, referral and additional support to promote engagement with NFU programmes and improved quality of life for their high-risk infants.

Measuring communicative participation using the FOCUS©: Focus on the Outcomes of Communication Under Six.

BACKGROUND: The FOCUS© is a new outcome tool for use by both parents and clinicians that measures changes in the communicative participation skills of preschool children. Changes in communicative participation skills as measured by the FOCUS were compared across three groups of children: those with speech impairments only (SI), those with language impairments only (LI) and those with both speech and language impairments (S/LI). METHODS: Participating families (n = 112, 75 male children) were recruited through 13 Canadian organizations. Children ranged from 10 months to 6 years 0 months (mean = 2.11 years; SD = 1.18 years) and attended speech-language intervention. Parents completed the FOCUS at the start and end of treatment. There were 23 children in the SI group, 62 children in the LI group and 27 children in the S/LI group. The average amount of the children's therapy varied from 7 to 10 h. RESULTS: The FOCUS captures changes in communicative participation for children with a range of communication disorder types and severities. All three groups of children made clinically important improvements according to their FOCUS scores (MCID ≥ 16 points). The FOCUS captured improvements in intelligibility, independent communication, play and socialization. CONCLUSIONS: The FOCUS measured positive changes in communicative participation skills for all three groups of children after 7-10 h of speech-language therapy. An outcome measure that targets only specific speech and language skills would miss many of the important social function changes associated with speech-language treatment.

Construct validity of the FOCUS© (Focus on the Outcomes of Communication Under Six): a communicative participation outcome measure for preschool children.

OBJECTIVE: The aim of this study was to establish the construct validity of the Focus on the Outcomes of Communication Under Six (FOCUS©). This measure is reflective of concepts in the International Classification of Functioning Disability and Health--Children and Youth framework. It was developed to capture 'real-world' changes (e.g. communicative participation) in preschoolers' communication following speech-language intervention. METHOD: A pre-post design was used. Fifty-two parents of 3- to 6-year-old preschoolers attending speech-language therapy were included as participants. Speech-language therapists provided individual and/or group intervention to preschoolers. Intervention targeted: articulation/phonology, voice/resonance, expressive/receptive language, play, and use of augmentative devices. Construct validity for communicative participation was assessed using pre-intervention and post-intervention parent interviews using the FOCUS© and the communication and socialization domains of the Vineland Adaptive Behavior Scales-II (VABS-II). RESULTS: Significant associations were found between the FOCUS©, measuring communicative participation, and the VABS-II domains for: (i) pre-intervention scores in communication (r = 0.53, P < 0.001; 95% CI 0.30-0.70) and socialization (r = 0.67, P < 0.001; 95% CI 0.48-0.80); (ii) change scores over-time in communication (r = 0.45, P < 0.001; 95% CI 0.201-0.65) and socialization (r = 0.39, P = 0.002; 95% CI 0.13-0.60); and (iii) scores at post-intervention for communication (r = 0.53, P < 0.001; 95% CI 0.30-0.70) and for socialization (r = 0.37, P = 0.003; 95% CI 0.11-0.50). CONCLUSIONS: The study provided evidence on construct validity of the FOCUS© for evaluating real-world changes in communication. We believe that the FOCUS© is a useful measure of communicative participation.

Development of an outcome measurement system for service planning for children and youth with special needs.

AIM: This study described the process used in developing an outcome measurement framework for system planning to improve services for children and youth with special needs and their families in a Canadian province. The study reports the results of several parent-completed measures, which would be useful in service planning as well as the acceptability and utility of these measures for use by families and service centres. METHODS/RESULTS: Development of a theoretical framework, consultation with key stakeholders, testing the utility of selected outcome measures and initial dissemination of results were critical elements in the successful development of an outcome system. Consultation with stakeholders confirmed use of the International Classification of Functioning, Disability and Health and the child-within-family-within community model as theoretical frameworks while building valuable partnerships and identifying potential barriers to implementation. Pilot testing showed three outcome measures were feasible for families to complete and the measures provided information about services for children that was valuable to families as well as service providers. Gaps in service delivery were identified and the need for better communication between service providers and communities to facilitate integrated services was highlighted. CONCLUSION: The findings from this study can be used to implement an outcome measurement system for children with special needs and may serve as a resource for international researchers who are working to develop valid tools as well as outcome systems that are useful for system planning.