Search

There is exponential clinical and research interest in joint hypermobility due to recognition of the complexity of identification, assessment, and its appropriate referral pathways, ultimately impacting management. This state-of-the-science review provides an international, multidisciplinary perspective on the presentation, etiology, and assessment of joint hypermobility, as it presents in those with and without a systemic condition. We synthesize the literature, propose standardizing the use of terminology and outcome measures, and suggest potential management directions. The major topics covered are (i) historical perspectives; (ii) current definitions of hypermobility, laxity, and instability; (iii) inheritance and acquisition of hypermobility; (iv) traditional and novel assessments; (v) strengths and limitations of current assessment tools; (vi) age, sex, and racial considerations; (vii) phenotypic presentations; (viii) generalized hypermobility spectrum disorder and hypermobility Ehlers-Danlos syndrome; and (ix) clinical implications and research directions. A thorough understanding of these topics will equip the reader seeking to manage individuals presenting with joint hypermobility, while mindful of its etiology. Management of generalized joint hypermobility in the context of a complex, multisystem condition will differ from that of acquired hypermobility commonly seen in performing artists, specific athletic populations, posttrauma, and so on. In addition, people with symptomatic hypermobility present predominantly with musculoskeletal symptoms and sometimes systemic symptoms including fatigue, orthostatic intolerance, and gastrointestinal or genitourinary issues. Some also display skeletal deformities, tissue and skin fragility, and structural vascular or cardiac differences, and these warrant further medical follow-up. This comprehensive review on the full spectrum of joint hypermobility will assist clinicians, coaches/sports trainers, educators, and/or researchers in this area.

Managing children and adolescents with syndromic hypermobility and their parents is challenging in the context of a standard consultation. The multi-organ involvement of the syndromes, the evolving classification criteria and their highly heterogeneous presentation complicate both diagnosis and management.The purpose of this article is to provide an overview of the diagnosis, management and support of children with hypermobility syndromes, including the role of the multidisciplinary team and common associated features.Optimising the quality of life of people with syndromic hypermobility begins with the early identification of their signs and symptoms. Diagnosis, ideally by adolescence, provides affected children and their parents with validation and directs their focus to management aimed at mitigating the socioeconomic, educational and health-related quality of life impact of these conditions.

Orthostatic intolerance (OI) is frequently reported in young women with generalized hypermobility spectrum disorder (G-HSD) and hypermobile EDS (hEDS). However, it remains currently unclear whether OI is a comorbidity or fundamental part of the pathophysiology of G-HSD or hEDS. This study investigated the prevalence and impact of OI in young women across the hypermobility spectrum. Forty-five women (14-30 years, 15 controls, 15 G-HSD, and 15 hEDS) undertook a head-up tilt (HUT) and active stand test. Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Hypotension (OH) were assessed using age-related criteria. Autonomic dysfunction and quality-of-life questionnaires were also completed. The prevalence of POTS was higher in women with G-HSD than hEDS and control groups during HUT (43% vs. 7% and 7%, respectively, p 0.05), but similar between groups during the active stand (47%, 27%, and 13% for G-HSD, hEDS, and control, respectively). No participants had OH. hEDS and G-HSD participants reported more severe orthostatic symptoms and poorer quality of life than controls. Although POTS was observed in hypermobile participants, there is no conclusive evidence that its prevalence differed between groups due to differences between the HUT and active stand assessments. Nevertheless, OI and broader autonomic dysfunction impacted on their quality of life.

The transition for allied health graduates from university to the workforce has been perceived to be difficult and overwhelming, leading to early attrition within healthcare professions. Work readiness is a crucial aspect of successful transition to the workforce, however the elements of work readiness are not clearly defined. The 62-item Work Readiness scale for Allied Health Professionals (WRS-AH), based on a Work Readiness scale for a generic population of graduates, has yet to be validated. The aim of this study was to validate and refine the WRS-AH and compare the results to the original four factor construct. Participants were 245 Australian allied health professional graduates who completed the WRS-AH. An exploratory factor analysis supported a four-factor solution with domains (interpersonal capabilities, practical wisdom, personal attributes, and organisational acumen) similar to the original WRS. The final WRS-AH had 32 items, demonstrated good reliability, and explained 38% of the total variance. Using the refined scale, on average, the Australian allied health graduates reported an overall work readiness score of 80% (SD 8) with the scores highest for practical wisdom (Mean 90%, SD 8) and lowest for personal attributes (Mean 65%, SD 14). This study supports a valid and reliable scale to measure the perceived work readiness of allied health graduates as they transition from university to the workforce. The WRS-AH confirms that work readiness is multi-dimensional and may provide a more targeted approach to interventions to improve work readiness in future allied health professional graduates.

Importance: Heritable disorders of connective tissue (HDCTs) affect hand function and participation in daily activities for children and adolescents. Objective: To describe hand impairment and function and determine the extent to which hand impairment and function explain the variation in self-reported functional performance. Design: Cross-sectional observational study. Setting: Specialist tertiary hospital. Participants: Children and adolescents ages 8–18 yr with HDCTs (N = 73). Intervention: None. Outcomes and Measures: Hand function outcomes included grip strength (digital dynamometer), manipulation and dexterity (Functional Dexterity Test, Nine-Hole Peg Test), and fine motor skills (Bruininks–Oseretsky Test of Motor Proficiency). Upper limb hypermobility was assessed using the Upper Limb Hypermobility Assessment Tool. Hand pain and fatigue were recorded for a timed button test and 3- and 9-min handwriting tasks. Functional performance was measured using the Childhood Health Assessment Questionnaire. Results: Scores on all hand function measures were below expected norms. Pain and fatigue were significantly worse after the writing tasks (p < .001) but not the button test (p > .40). Secondary students had significantly lower handwriting scores than primary students (p = .03) but similar grip strength z scores (p = .95). Variation in self-reported functional performance was explained by grip strength (6%) and upper limb hypermobility and dexterity (16%). Conclusions and Relevance: Young people with HDCTs have poor hand function attributable to poor grip strength and hand pain and fatigue. Comprehensive upper limb evaluation and ongoing monitoring throughout the school years are warranted to inform timely intervention. What This Article Adds: Children and adolescents with heritable disorders of connective tissue have difficulty with hand function that affect their participation in daily activities. The results of this study can help clinicians identify, assess, and monitor daily activities, performance skills, and symptoms of children and adolescents with HDCTs to promote their participation in all aspects of daily life.

The onset of the COVID-19 pandemic was associated with restricted community movement and limited access to healthcare facilities, resulting in changed clinical service delivery to people with cystic fibrosis (CF). This study aimed to determine clinical outcomes of Australian adults and children with CF in the 12-months following the onset of the COVID-19 pandemic.This longitudinal cohort study used national registry data. Primary outcomes were 12-month change in percent predicted forced expiratory volume in one second (FEV1 %pred), body mass index (BMI) in adults and BMI z-scores in children. A piecewise linear mixed-effects model was used to determine trends in outcomes before and after pandemic onset.Data were available for 3662 individuals (median age 19.6 years, range 0-82). When trends in outcomes before and after pandemic onset were compared; FEV1 %pred went from a mean annual decline of -0.13% (95%CI -0.36 to 0.11) to a mean improvement of 1.76% (95%CI 1.46-2.05). Annual trend in BMI improved from 0.03 kg/mIn the 12-months following the onset of the COVID-19 pandemic, there was an improvement in the clinical outcomes of people with CF when compared to the pre-pandemic period.

Objective Reduced maximal muscle strength and strength endurance have been found in patients with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorder (hEDS/HSD) and are recognized as common associated features of the disorder. However, the extent to which these parameters change over time is currently not documented. Therefore, the purpose of this 8-year follow-up study was to investigate this evolution. Methods Thirty female patients (mean age 41 years) with hEDS/HSD and 17 controls participated at baseline and 8 years later. Maximal muscle strength and strength endurance tests of the knee flexors and extensors, and 2 lower-extremity posture maintenance tests were performed to evaluate static strength endurance. In addition, muscle mass and density were evaluated by dual-energy x-ray absorptiometry and peripheral quantitative computed tomography. Results Maximal muscle strength and strength endurance were significantly lower at both baseline and follow-up in the hEDS/HSD group compared to the control group (P

OBJECTIVE The objective of the study was to explore and then validate the factor structure of the Pain Assessment Tool (PAT). MATERIALS AND METHODS A retrospective medical record review was performed of all infants who were admitted to a neonatal intensive care unit between 2008 and 2018 and had 1 PAT assessment (n=2111). Scores on items of the PAT were collected. Infants were randomized to either the principal component analysis (n=1100) to explore the factor structure or confirmatory factor analysis (n=1011). RESULTS Infants in the 2 samples were demographically comparable. A 2-factor model, consisting of factors Behavioral and Physiological Pain Measures, was extracted, explaining 39.8% of the total variance. There was a low interfactor correlation (r=0.12), and both Behavioral (r=0.59) and Physiological Pain (r=0.37) Measures factor scores were correlated with nurses' perception of pain scores. When the frequencies in the gestational age at birth categories were compared between upper and lower quartile score infants, there was more with pain at preterm than at term (χ2(3)=44.9, P

Idiopathic toe walking (ITW) is an exclusionary diagnosis given when children toe walk without a medical reason. Treatment effectiveness studies rarely collect data other than ankle range of motion or presence of toe walking.To develop a set of outcome measures identified by health professionals for use when providing treatment with children who have ITW, to understand if parents agreed with this set, and if parents believed they could perform these measures in clinician absence.Study 1 developed consensus and agreement on outcome measures for children receiving treatment for ITW through the modified Delphi technique with 10 expert health professionals. Parents of children who toe walked were invited to participate in an online survey for the second study, in which they were asked to rate the importance of these measures and if they believed they may be able to collect the data about their child without the health professional being present.Ten health professionals developed nine questions and assessments through consensus and agreement over the three rounds. There were 34 parents providing information about satisfaction with toe walking assessments and treatments. Of these, 27 provide detailed responses about the outcome questions and assessments. The majority (91 % of 24 parents) in support of the outcome measures identified by experts. Parents expressed a willingness to self-complete questions or be taught assessments to monitor their child's progress.Use of these clinically based measures may enable consistent data collection regardless of the setting and provide the foundation for large data pooling in future treatment research.

Identification of children at risk of palmar burn scar is important for early initiation of scar management. This study determined the interrater reliability of face-to-face and photographic assessments of 29 palmar cutaneous functional units (CFUs) predicted to scar following palmar burn. The validity of photographic compared to face-to-face assessment, and the predictive validity of both assessment types to identify scarring at 3 to 6 months following burn, was also established. Thirty-nine children (40 hands) post burn injury were assessed face-to-face in the clinical setting, following healing of their palmar burn, by three burn therapists. Photographs of the children’s hands at initial assessment were assessed by the same therapists a minimum of 6 months later. To determine which CFUs scarred, children were reassessed face-to-face in the clinical setting 3 to 6 months following their burn. For analysis, 29 CFUs were merged into eight separate groups to determine the number of CFUs predicted to scar per CFU group for face-to-face and photographic assessments. The range of agreement for individual CFUs within CFU groups was also calculated for both assessment types. Excellent interrater reliability was established for face-to-face assessment in all eight CFU groups (ICC2,1 0.83–0.96). Photographic assessment demonstrated good to excellent interrater reliability in six CFU groups (ICC2,1 0.69–0.90) and validity in seven CFU groups (ICC2,1 0.66–0.87). Good to excellent predictive validity was established for both assessment types in seven CFU groups (face-to-face ICC2,1 0.60–0.95, photographic ICC2,1 0.69–0.89). Experienced therapists can reliably assess CFUs face-to-face or via photographs and predict future scar development.

Many things happen in your body when you exercise. It is not just your muscles that get a workout. Almost every system in your body improves because of exercise. Physical therapists make the most of these changes. They provide movement-based treatments for a very wide range of conditions. In this article, we discuss how physical therapy came about, we explain where you might find physical therapists and what kinds of conditions they help with, and we describe how movement can help our bodies. Recent scientific advances certainly have people moving in a healthy direction!

Longitudinal fibular deficiency (LFD) is the most common congenital long bone deficiency. This study aimed to objectively assess the physical performance of children and adolescents with LFD compared with unaffected peers, and to examine trends over age for subgroups of the LFD population.Differences between children with LFD and unaffected peers were examined with hand-held dynamometry for lower-limb muscle strength, Six-Minute Walk Test, Timed up and down stairs test, Star Excursion Balance Test, and Standing long jump.Thirty-nine children with LFD and 284 unaffected peers participated. Children with LFD performed at a lower level than their unaffected peers, on all measures of physical performance (mean 2.1Children with LFD performed at a significantly lower level than unaffected peers on all measures of physical performance other than jumping. The largest differences were in older children. This paper provides baseline functional data for future interventions in LFD.Cross-sectional study.Implications for RehabilitationThis paper provides the first baseline functional data using validated objective measures on a consecutive cohort of children and adolescents with longitudinal fibular deficiency.Children with LFD performed significantly worse than their unaffected peers on all measures of physical performance other than jumping, with children falling further behind their peers as they age.Children who undergo an amputation typically have the most severe anatomical presentation and yet perform at an equivalent functional level.This paper identifies multiple modifiable impairments that represent potential opportunities for rehabilitation professionals to target with conservative treatment options to improve functional performance.

Aim The aim of this study was to investigate parent perspectives on how heritable disorders of connective tissue (HDCT) affect a child's everyday life. In addition, this study aimed to determine if parents seeking health professional services perceive their children with HDCT to have difficulties with activities reliant on hand function. Methods This cross-sectional study used a questionnaire for parents to explore the impact of an HDCT on a child's ability to carry out everyday activities. Parents of children (8-18 years) attending a tertiary connective tissue dysplasia clinic, over a 12-month period, were invited to participate. Results We analysed 100 surveys completed by parents. Children with Ehlers-Danlos syndrome-hypermobile type, joint hypermobility syndrome (48%) and osteogenesis imperfecta (42%) were the largest diagnostic groups represented. Pain (73%) and fatigue (68%) were the most common symptoms parents perceived to affect day-to-day activities. More parents were satisfied with their child's self-care (61%) than school participation (33%). Keeping up with handwriting (71%) and gross motor activities (70%) were the most frequently reported difficulties at school. Most parents (65%) reported leisure activity difficulties, with pain (64%) and fatigue (60%) as the main contributing factors. Conclusions This study has provided new knowledge about the concerns of parents with their child's engagement in everyday life including the impact of HDCT on hand function. Further research is needed on effective management strategies to reduce symptoms and improve hand function for these children.

One barrier to optimal pain management in the neonatal intensive care unit (NICU) is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are (1) vulnerable to pain and harm, and (2) completely dependent on others for pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate's family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers.

OBJECTIVES Clinical guidelines recommend that health care providers assist children to understand their experience of persistent pain, with pain science education a key component of clinical management in pediatric pain clinics. Currently, no tool exists to assess a child's concept of pain. The aim of this study was to develop such a tool and to evaluate its psychometric properties. METHODS After a rigorous process to generate items, assess content validity, evaluate readability and understandability, and pretest items, a cohort of 124 children (aged 8 to 12 y) independently completed the measure on 2 occasions, along with additional measures of pain, function, and pain-related distress. RESULTS The resulting unidimensional 14-item Concept of Pain Inventory (COPI) had acceptable internal consistency (α= 0.78) and moderate test-retest reliability (intraclass correlation coefficient (3,1) = 0.55; 95% CI, 0.37-0.68). Higher COPI scores reflect greater alignment with contemporary pain science. COPI scores were inversely correlated with pain intensity and functional disability, but unrelated to pain catastrophizing and pain-related fear. At 1 to 2 months' follow-up, baseline COPI scores were inversely correlated with clinical variables of functional disability and pain intensity. DISCUSSION These results support the COPI as a brief, psychometrically sound tool to assess a child's concept of pain. Clinically, this tool may facilitate individualized pain science education to target identified conceptual "gaps" or misconceptions and to evaluate the effectiveness of pain science education in children. Further research examining its efficacy and impact is warranted.

BACKGROUND The aim of this study was (a) to statistically identify distinct trajectories of pain following surgery in infants less than 6 months of age, and (b) to compare these trajectories to descriptions of chronic pain in infants in the neonatal intensive care unit (NICU). METHODS This was a retrospective medical record review of infants admitted to a NICU between 2008 and 2018 following surgery. All infants who underwent one major procedure to the abdomen or thorax and returned to the NICU following surgery were included. Pain was assessed regularly using a validated Pain Assessment Tool. Group-based trajectory analysis was used to determine the trajectory of recovery from pain following surgery. RESULTS A total of 726 infants were included in the study. A two-group trajectory model, defined as typical and atypical pain trajectories, was selected. The typical group (n = 467) consisted of infants who had significantly fewer days (1.5 ± 2.3 vs 5.3 ± 5.5, p

Background Idiopathic toe walking (ITW) is an exclusionary diagnosis resulting in a child walking on the balls of their feet. Preferred treatment options may be due to the severity of the toe or the health professional preference There are limited guidelines supporting consistent treatment recommendations for this condition. This research aimed to understand agreement between health professionals' knowledge of evidence for common treatment strategies for ITW and if health professionals supported these strategies being used in clinical practice. Methods An international online survey was opened to registered health professionals who treat children with ITW between July 2017 and March 2018. The survey had two components: (a) demographic variables and variables relating to knowledge of evidence about ITW treatments and (b) support for common treatment strategies. Additional data on strategy use, referrals, and preference were collected. Kappa statistics described intra-rater agreement between evidence knowledge and support. Multivariable regression analyses identified factors associated with the 10 most commonly preferred treatments. Results There were 908 international responses. Kappa agreement for paired correct responses determined a fair agreement for evidence support knowledge for four strategies including watch and wait (Kappa = 0.24), stretching (Kappa = 0.30), sensory integration strategies (Kappa = 0.40), and motor control strategies (Kappa = 0.24) and moderate responses for 13 others. No strategies had greater than moderate agreement between correct knowledge of evidence and strategy support. Profession, location, number of children seen in practice, and not correctly identifying the evidence factored into many of the most commonly used strategies for ITW (p Conclusions The results from this study, which confirm a variety of interventions, are utilized in the management of ITW around the world. Furthermore, there remains a disconnection between paediatric health professionals' understanding of the evidence of common treatment strategies of ITW and a consensus for the treatment of this condition.

Background and objective The aim of this study was to investigate prognostic factors for pain and functional disability in children and/or adolescents with persisting pain. Databases and data treatment To be included, studies had to be published, peer-reviewed prospective cohort studies of children and/or adolescents with persisting pain at baseline, that reported at least one baseline prognostic factor and its relationship with pain or functional disability at least 1 month after baseline. Two reviewers independently assessed study eligibility, completed data extraction and undertook quality assessment. Meta-analyses were performed when a prognostic factor was reported in two or more studies. Results Of 10,992 studies identified from electronic database searches, 18 were included, investigating 62 potential prognostic factors. In clinical settings, insufficient data were available for meta-analysis. Some positive associations with pain and/or disability were reported by single studies for older age, baseline pain intensity and baseline functional disability across multiple combinations of follow-up times and outcomes. In community settings, meta-analyses of two studies found that prognostic factors for the ongoing presence of pain at medium-term (1-year) follow-up were older age (OR 1.25; 95% CI = 1.05-1.47), weekly day tiredness (OR 1.69; 95% CI = 1.14-2.51), weekly abdominal pain (OR 1.44; 95% CI = 1.03-2.02) and waking during the night (OR 1.49; 95% CI = 1.05-2.13). No studies in community settings reported on prognostic factors for functional disability. Conclusions Prognostic factors having significant associations with future pain and disability were identified; however, as few were investigated in more than one comparable study, the results need to be interpreted with caution. Significance Prognostic factors from across the biopsychosocial spectrum are important to consider in paediatric pain clinical practice. However, most prognostic factors that experts have previously agreed upon have not been assessed in prospective cohort studies to date. The findings may help with prioritising data to collect during clinical assessments of children presenting with pain, in the context of pain and functional disability outcomes.

ObjectivesTo define and validate types of pain in critically ill neonates and infants by researchers and clinicians working in the neonatal intensive care unit (NICU) and high dependency unit (HDU).DesignA qualitative descriptive mixed-methods design.Procedure/sEach stage of the study was built on and confirmed the previous stages. Stage 1 was an expert panel to develop definitions; stage 2 was a different expert panel made up of neonatal clinicians to propose clinical characteristics associated with the definitions from stage 1; stage 3 was a focus group of neonatal clinicians to provide clinical case scenarios associated with each definition and clinical characteristics; and stage 4 was a survey administered to neonatal clinicians internationally to test the validity of the definitions using the clinical case scenarios.ResultsIn stage 1, the panel (n=10) developed consensus definitions for acute episodic pain and chronic pain in neonates and infants. In stage 2, a panel (n=8) established clinical characteristics that may be associated with each definition. In stage 3, a focus group (n=11) created clinical case scenarios of neonates and infants with acute episodic pain, chronic pain and no pain using the definitions and clinical characteristics. In stage 4, the survey (n=182) revealed that the definitions allowed an excellent level of discrimination between case scenarios that described neonates and infants with acute episodic pain and chronic pain (area under the receiver operating characteristic=0.87 and 0.89, respectively).ConclusionsThis four-stage study enabled the development of consensus-based and clinically valid definitions of acute episodic pain and chronic pain. There is a need to define and validate other pain types to inform a taxonomy of pain experienced by neonates and infants in the NICU and HDU.

To determine the rates of medical investigations, complications, interventions, and outcomes in children with achondroplasia.Children and adolescents with achondroplasia born between 2000 and 2019, aged between 0 and 18 years of age, and seen at The Children's Hospital at Westmead skeletal dysplasia clinic were included. Data were collected retrospectively from clinical records. Standard descriptive statistics were used for analysis.The study included 108 participants, 58 males and 50 females. Ninety-nine participants (91.7%) entered the study at birth. The other nine (8.3%) participants entered the study after birth (mean age = 2 years 4 months, SD = 1 year 8 months). The median age of exit from the study was 8 years 8 months (IQR = 8 years 9 months) with a median follow-up of 8 years 8 months (IQR = 8 years 9 months). Fifty-two (48%) participants presented with craniocervical stenosis, 15 (13.9%) with hydrocephalus, 66 (61.1%) with hearing impairment, 44 (40.7%) with sleep-disordered breathing, 46 (42.6%) with lower-limb malalignment, 24 (22.2%) with thoracolumbar kyphosis, 10 (9.3%) with symptomatic spinal stenosis, 12 (11.1%) with obesity, and 16 (14.8%) who had at least one admission for respiratory illness. Two children died during the study period.We report contemporary rates of medical complications in an Australian population of children with achondroplasia. Recommendations for surveillance in clinical practice are discussed. This information will help guide clinicians with their expectant management of achondroplasia and provide prognostic information to the families of children with achondroplasia.

Background Generalised joint hypermobility (GJH) is highly prevalent among children and associated with symptoms in a fifth with the condition. This study aimed to synthesise outcome measures in interventional or prospective longitudinal studies of children with GJH and associated lower limb symptoms. Methods Electronic searches of Medline, CINAHL and Embase databases from inception to 16th March 2020 were performed for studies of children with GJH and symptoms between 5 and 18 years reporting repeated outcome measures collected at least 4 weeks apart. Methodological quality of eligible studies were described using the Downs and Black checklist. Results Six studies comprising of five interventional, and one prospective observational study (total of 388 children) met the inclusion criteria. Interventional study durations were between 2 and 3 months, with up to 10 months post-intervention follow-up, while the observational study spanned 3 years. Three main constructs of pain, function and quality of life were reported as primary outcome measures using 20 different instruments. All but one measure was validated in paediatric populations, but not specifically for children with GJH and symptoms. One study assessed fatigue, reporting disabling fatigue to be associated with higher pain intensity. Conclusions There were no agreed sets of outcome measures used for children with GJH and symptoms. The standardisation of assessment tools across paediatric clinical trials is needed. Four constructs of pain, function, quality of life and fatigue are recommended to be included with agreed upon, validated, objective tools.

Introduction There is diversity in outcome measures used during monitoring and treatment of the exclusionary diagnosis idiopathic toe walking (ITW) in children. This diversity makes synthesis of treatment effects difficult. The primary aim of this research was to develop a core set of outcome measures identified by health professionals for use when undertaking treatment with children who have ITW. The secondary aims were to understand if parents agreed with this core set, and if parents believed they could undertake any of these measures in the absence of the clinician. Methods Study 1 was the development of consensus and agreement through the modified Delphi technique with 10 expert health professionals. The first round gathered questions and assessments for consensus, the second and third round enabled agreement with these questions and assessments. Study 2 was an online survey where parents of children who toe walked were invited to provide opinions on the importance of these measures and if they believed they may be able to collect the data about their child without the health professional being present. Results Ten health professionals provided 21 questions and assessments in Round 1 to measure treatment effectiveness for ITW in children. Following consensus and agreement by health professionals over the three rounds, there were nine questions and assessments presented to parent participants in Study 2. There were 34 parents who provided information about their satisfaction with toe walking assessments and treatments. There 27 parents provide detailed responses about the outcome questions and assessments, most parents in support of the core set identified by the experts. Parents also expressed a willingness to self-complete questions or be taught assessments to monitor their child’s progress. Conclusion This research developed a core set of questions and measures clinicians, and researchers could implement during health care provision and any research of children with ITW. Use of these measures will enable consistent data collection regardless of the setting and provide the foundation for large data pooling in future treatment research.

OBJECTIVES Assessing knowledge and beliefs regarding pain science can identify gaps and misconceptions. The Concept of Pain Inventory (COPI) was recently developed in children with the intent to guide targeted pain science education. We utilized the original COPI item pool to (1) develop a tool to assess an adult's concept of pain in a cohort who had not received pain science education, (2) evaluate its psychometric properties, (3) examine distribution of scores in a cohort of adults who had received pain science education, and (4) examine associations between scores and clinical variables. MATERIALS AND METHODS A total cohort of 627 adults were recruited through social media for an online survey. Initial development was conducted on those who had not received prior pain science education (n=125), then the COPI-Adult tool was tested in those who had received prior pain science education (n=502). RESULTS The resulting unidimensional 13-item COPI-Adult had acceptable internal consistency (α=0.78) and good test-retest reliability at 1 week (Intraclass Correlation Coefficient3,1=0.84 (95% confidence interval: 0.71-0.91). Higher COPI-Adult scores reflect greater alignment with contemporary pain science. COPI-Adult scores were correlated with revised Neurophysiology of Pain Questionnaire (rNPQ) scores and inversely correlated with average and current pain intensity, and pain interference. Adults who reported having received pain science education had significantly higher mean COPI-Adult scores than those who had not, and this difference exceeded the smallest detectable change. DISCUSSION The COPI-Adult is a brief questionnaire with promising psychometric properties to identify conceptual gaps or misconceptions to inform individualized pain science education.

Palmar contracture in young children can have significant developmental consequences. Despite this, objective techniques to measure palmar range of movement and quantify contracture in young children are limited.The purpose of this study was to determine the reliability of hand span and hand length measures in young children and to establish whether there is any association with age, sex and presence of a palmar burn injury in the reliability of these measures. The study also sought to determine the normative difference and establish a cut off value for the between-hand difference to identify loss of movement in 1 hand.Cross sectional METHODS: Forty-four children aged 0 to5 years were recruited. Twenty-two children had a unilateral palmar burn injury and 22 did not have a palmar burn injury. Each child's hand span and hand length were measured 3 times. This was performed twice by the first assessor and once by the second assessor. Intraclass correlation coefficients were calculated to determine the intra-rater and inter-rater reliability. The largest of the 3 values for both hand span and hand length from the first assessor's first assessment were used to determine the normative between-hand difference. Outliers were removed prior to determining the normative difference. Children were considered outliers if their between-hand difference in hand span and/or hand length was in the top 5% of values.Excellent reliability was established for hand span and hand length measures for the whole group (intra-rater ICCThis measurement technique has excellent reliability and could be a useful method to quantify palmar range of movement and identify contracture in young children with unilateral hand injuries.

The aim of this study was to estimate the childhood prevalence of achondroplasia, trends over time in birth prevalence, and age at diagnosis in Australia. Children born between 1990 and 2019 with a clinical and radiological and/or molecular diagnosis of achondroplasia were identified from a tertiary hospital servicing New South Wales (NSW) and the Australian Capital Territory (ACT) and compared with population data from the Australian Bureau of Statistics. Childhood prevalence of achondroplasia, based on children ≤19 years of age and resident in NSW/ACT on June 30, 2019 (n = 109), was 5.2 per 100,000. A total of 127 individuals with achondroplasia were born in 1990-2019 in NSW/ACT. Birth prevalence rates increased across birth decades, from 3.3 per 100,000 live births in 1990-1999 to 5.3 per 100,000 in 2010-2019 (p < 0.0001). Median age at diagnosis decreased to 17 days in 2010-2019 compared with 30 days in 1990-1999 (p = 0.035), although the overall decreasing trend across consecutive decades did not reach statistical significance. This is the first study to show a rising birth prevalence rate for achondroplasia in Australia with a concurrent decreasing age at diagnosis, both of which were statistically significant after 2 decades.

BackgroundSkeletal dysplasia are genetic disorders of cartilage and bone, characterized by impairments commonly resulting in short stature, altered movement biomechanics, pain, fatigue and reduced functional performance. While current tools quantify functional mobility performance, they have not been standardly used in this population group and do not capture patient-reported symptoms such as pain or fatigue. This study evaluated a new tool, the Screening Tool for Everyday Mobility and Symptoms (STEMS), designed to accurately and objectively assess functional mobility and associated symptomology for individuals with skeletal dysplasia.MethodsIndividuals aged 5–75 years with a skeletal dysplasia completed the STEMS, the Functional Mobility Scale (FMS) and Six Minute Walk Test (6MWT). The correlation among the STEMS, use of mobility aides, FMS and 6MWT normalised for leg length was calculated. One-way analysis of variance compared the STEMS symptomatology to normalised 6MWT distance.ResultsOne hundred and fifty individuals with skeletal dysplasia (76 achondroplasia, 42 osteogenesis imperfecta, 32 other; 74 ConclusionsThe Screening Tool for Everyday Mobility and Symptoms (STEMS) is a useful new tool to identify and record mobility aide use and associated self-reported symptoms across three environmental settings for adults and children with skeletal dysplasia. The STEMS may assist clinicians to monitor individuals for changes in functional mobility and symptoms over time, identify individuals who are functioning poorly compared to peers and need further assessment, and to measure effectiveness of treatment interventions in both clinical and research settings.

The COVID-19 pandemic has highlighted the importance of being adaptable and flexible in our teaching practices in higher education. Traditionally, a siloed approach to curriculum development has dominated in higher education institutions. These silos are known to create inefficiencies and, in the context of developing teaching resources, often result in the duplication of curricula, resulting in wasted effort and time, and inconsistent teaching practices. In this short communication, we put forward a sustainable and innovative approach to cross-disciplinary curriculum development, known as the Connected Curriculum for Professionals in Health initiative. This ongoing initiative was launched in 2018 and brought together teaching academics and students to co-design a centralized online repository of high-quality, evidence-based online educational modules that support student learning across disciplines. A mixed-methods evaluation of this initiative found that this is a well-utilized repository of engaging modules (n = 46) that have enhanced learning outcomes for both undergraduate and postgraduate health professional students. The Connected Curriculum for Professionals in Health initiative has wide-ranging applicability, beyond disciplines, and is a sustainable, efficient, and strategic approach to enhance pedagogy and the student experience.

One barrier to optimal pain management in the neonatal intensive care unit (NICU) is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are (1) vulnerable to pain and harm, and (2) completely dependent on others for pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate's family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers.

ObjectiveTo understand parent journeys while navigating diagnosis, assessment or treatment of their children with idiopathic toe walking (ITW).DesignMixed methods qualitative study: analyses of survey data from the measure of processes of care-20 (MPOC-20) and semistructured interviews were analysed with an interpretative phenomenological analysis approach. Trustworthiness of data was achieved through member checking, researcher triangulation, reflexivity and transferability and comparison with the MPOC-20 results.SettingUSA and Australia.ParticipantsParents of children diagnosed with ITW who had seen more than one health professional during their care and lived in Australia or the USA.ResultsTen parents of children aged between 3 and 13 years and diagnosed with ITW participated. Parents described complex themes relating to their journeys. The themes relating to their journeys were: (1) riding the rollercoaster of diagnosis; (2) navigating the treatment options and (3) supporting parents in the journey. Each theme was supported by parent quotes about their experiences. Challenges were not localised to one country, in spite of vastly different healthcare systems.ConclusionsThese findings create opportunities for an international approach to education, treatment recommendations and outcome measures to improve patient and parent experiences. Health professionals should consider the impact on parents in navigating between health professionals when provided with a diagnosis which can have variable outcomes and varied treatment options.