Outcomes following intensive day rehabilitation for young people in Western Australia.

OBJECTIVE: Intensive rehabilitation aims to improve and maintain functioning in young people who experience disability due to illness or injury. Day rehabilitation may have advantages for families and healthcare systems over inpatient models of rehabilitation. METHODS: This study evaluated the goals and outcomes of a cohort of young people in Western Australia who attended a specialist intensive day rehabilitation programme ("iRehab") at Perth Children's Hospital. Analysis of the iRehab service database was performed. Rehabilitation goals and outcomes were recorded as per the Canadian Occupational Performance Measure (COPM), Children's Functional Independence Measure (WeeFIM), and Goal Attainment Scale (GAS). RESULTS: There were 586 iRehab admissions between August 11, 2011, and December 31, 2018. Admissions were divided by diagnosis: Cerebral Palsy (228, 38.5%), Acquired Brain Injury (125, 21.3%), Spinal Cord Disorders (91, 15.5%), and Other (141, 24.2%). Mean COPM Performance increased by 2.78 points from admission to discharge (95% CI 2.58 to 2.98, p < 0.001). Mean COPM Satisfaction was 3.29 points higher at discharge than admission (95% CI 3.07 to 3.51, p < 0.001). Mean total WeeFIM score improved by 6.51 points between admission and discharge (95% CI 5.56 to 7.45, p < 0.001), and by 3.33 additional points by six months post discharge (95% CI 2.14 to 4.53, p < 0.001). Mean GAS T-scores increased by 27.85 (95% CI 26.73 to 28.97, p < 0.001) from admission to discharge, and by 29.64 (95% CI 28.26 to 31.02, p < 0.001) from admission to six months post discharge, representing improvement consistent with team expectations. CONCLUSION: This study describes a model by which intensive rehabilitation can be delivered in a day rehabilitation setting. A diverse population of young people who experienced disability achieved significant improvements in occupational performance, independence, and goal attainment after accessing intensive day rehabilitation. Improvements were measured in all diagnostic subgroups and were maintained six months after discharge.

From guidelines to practice: A retrospective clinical cohort study investigating implementation of the early detection guidelines for cerebral palsy in a state-wide early intervention service.

OBJECTIVES: To report on knowledge translation strategies and outcomes from the implementation of the early detection guidelines for cerebral palsy (CP) in a state-wide tertiary early intervention (EI) service and investigate the impact of social determinants on clinical services. DESIGN: Retrospective longitudinal cohort study. SETTING: The Western Australia tertiary paediatric EI service. PARTICIPANTS: EI clinicians, consumers and children using the EI service. OUTCOME MEASURES: Knowledge translation strategies including consumer perspectives, clinician training and Communities of Practice (CoP) guided implementation. We measured changes in referral number and age, delivery of early detection and intervention following the implementation of the guidelines. Exposure to adverse childhood experiences (ACEs), appointment non-attendance (DNA) rates, remoteness and socioeconomic quintiles were used to measure social determinants of health using negative binomial (Incidence Rate Ratios, IRR) and logistic regression (Odds Ratios, ORs). RESULTS: Ten consumers participated in Focus Groups, 100 clinicians were trained and 22 clinicians established a monthly CoP. Referrals increased fourfold to 511 children. Corrected gestational age at referral decreased from a median of 16.1 to 5.1 months (p<0.001) and at first appointment from 18.8 to 6.8 months (p<0.001). Children living in social disadvantage had the highest DNA risk (quintile 1 vs 5: IRR 2.2, 95% CI 1.1 to 4.6, p=0.037). Children exposed to ACEs had higher odds of living in social disadvantage (quintile 1 vs 5, OR=3.8, 95% CI 1.4 to 10.0, p=0.007). No significant association was found between remoteness and DNA rate or ACE score. CONCLUSIONS: Implementation strategies reduced referral age and improved the delivery of early detection assessments. Further investigation of the association between social disadvantage, DNA risk and ACE score is required in the development of a state-wide early detection network.

Early Moves: a protocol for a population-based prospective cohort study to establish general movements as an early biomarker of cognitive impairment in infants.

INTRODUCTION: The current diagnostic pathways for cognitive impairment rarely identify babies at risk before 2 years of age. Very early detection and timely targeted intervention has potential to improve outcomes for these children and support them to reach their full life potential. Early Moves aims to identify early biomarkers, including general movements (GMs), for babies at risk of cognitive impairment, allowing early intervention within critical developmental windows to enable these children to have the best possible start to life. METHOD AND ANALYSIS: Early Moves is a double-masked prospective cohort study that will recruit 3000 term and preterm babies from a secondary care setting. Early Moves will determine the diagnostic value of abnormal GMs (at writhing and fidgety age) for mild, moderate and severe cognitive delay at 2 years measured by the Bayley-4. Parents will use the Baby Moves smartphone application to video their babies' GMs. Trained GMs assessors will be masked to any risk factors and assessors of the primary outcome will be masked to the GMs result. Automated scoring of GMs will be developed through applying machine-based learning to the data and the predictive value for an abnormal GM will be investigated. Screening algorithms for identification of children at risk of cognitive impairment, using the GM assessment (GMA), and routinely collected social and environmental profile data will be developed to allow more accurate prediction of cognitive outcome at 2 years. A cost evaluation for GMA implementation in preparation for national implementation will be undertaken including exploring the relationship between cognitive status and healthcare utilisation, medical costs, health-related quality of life and caregiver burden. ETHICS AND DISSEMINATION: Ethics approval has been granted by the Medical Research Ethics Committee of Joondalup Health Services and the Health Service Human Research Ethics Committee (1902) of Curtin University (HRE2019-0739). TRIAL REGISTRATION NUMBER: ACTRN12619001422112.

Botulinum toxin and surgical intervention in children and adolescents with cerebral palsy: who, when and why do we treat?

INTRODUCTION: This audit aimed to increase understanding of the long-term outcomes of evidence-based medical and surgical interventions to improve gross motor function in children and adolescents with Cerebral Palsy. METHODS: Retrospective audit of a birth cohort (2000-2009) attending a tertiary service in Western Australia. RESULTS: The cohort comprises 771 patients aged 8 to 17 years. Percentage of children receiving no Botulinum Toxin treatments in each Gross Motor Functional Classification System level was: I: 40%, II: 26%, III: 33%, IV: 28% and V: 46%. Of the total cohort, 53% of children received 4 or less Botulinum Toxin treatments and 3.7% received more than 20 treatments. Statistically significant difference in the rate of use of Botulinum Toxin pre and post-surgery (p < 0.001) was documented. Children levels IV and V had 5 times the odds of surgery compared to children levels I-III (Odds Ratio 5.2, 95% Confidence Interval 3.5 to 7.8, p < 0.001). For 578 (75%) of participants the last recorded level was the same as the first. CONCLUSION: This audit documents medical intervention by age and Gross Motor Functional Classification System level in a large cohort of children with cerebral palsy over time and confirms stability of the level in the majority.IMPLICATIONS FOR REHABILITATIONThe information from this audit may be of use in discussions with families regarding the timing and use of Botulinum toxin and surgical intervention for motor function in children and adolescents with Cerebral Palsy.Long term use of Botulinum Toxin within an integrated evidence-based clinical program is not associated with loss of gross motor function in the long term as evidenced by the maintenance of Gross Motor Functional Classification System stability.

A prospective study investigating gross motor function of children with cerebral palsy and GMFCS level II after long-term Botulinum toxin type A use.

BACKGROUND: The aim of this study is to contribute to the knowledge base on the long-term outcomes of evidence-based medical interventions used to improve gross motor function in children and adolescents with Cerebral Palsy. METHOD: Prospective cohort study of children with Cerebral Palsy in the birth years 2000-2009 attending a tertiary level service for children with Cerebral Palsy who's first recorded Gross Motor Function Classification System level was II. RESULTS: A total of 40 children were eligible for the study, of whom 28 (72.7%) enrolled. The Botulinum toxin A treatment for this cohort, (median and interquartile ranges) were: total number of lower limb Botulinum toxin A injections 11 (6.7, 5.5); total dose of Botulinum Toxin A per lower limb treatment 6.95 u/kg (4.5, 11); and dose of Botulinum Toxin u/kg/muscle 2.95 (2.2, 4). For all 28 subjects there was a median of 15 (8.5 to 22) Gross Motor Function Classification System level recordings: six of the 28 children (21.4%) improved from level II to level I, the remaining 22 children remained stable at level II (78.6%). In this highly treated population, the average 66 item Gross Motor Function Measure score for the 22 children in level II was 72.55, which is consistent with the mean of 68.5 reported in the original Ontario cohort. CONCLUSION: This cohort study has confirmed that children with Cerebral Palsy, Gross Motor Function level II treated at a young age with repeated doses of Botulinum Toxin A within an integrated comprehensive service, maintain or improve their functional motor level at a later age.

Traumatic spinal cord injuries: A retrospective cohort study of children seen in Western Australia between 1996 and 2016.

PURPOSE: To describe the medical complexity of traumatic spinal cord injury (TSCI) in paediatric patients in Western Australia (WA). Secondly, to determine if Princess Margaret Hospital (PMH) for Children (the tertiary paediatric centre in WA where all TSCI patients are managed) is meeting the requirements of the Australasian Rehabilitation Outcomes Centre (AROC) paediatric rehabilitation minimum data set gathered on each patient. METHODS: Retrospective cohort study of patients seen at PMH between 1996-2016. The AROC minimum dataset information data were gathered on each patient. Functional status and rehabilitation outcomes were assessed using Functional Independence Measure for Children (weeFIM), Canadian Occupational Performance Measure (COPM), and Goal Attainment Scaling (GAS). Patient complexity was captured by documenting the specialty teams involved, the number of readmissions, and the International Statistical Classification of Disease and Related Health Problems Z codes. RESULTS: Data from 19 patients (13 males, age range 6 months-15 years; 6 females, age range 4 years-13 years) were available. There were 10 cervical TSCIs with a median length of stay of 213 days and 9 thoracic TSCIs with a median length of stay of 49 days. Patients had between zero and six comorbidities prior to their TSCI. CONCLUSIONS: Children with medical complexity are responsive to rehabilitation but have a high burden of care, requiring multiple-specialty care and hospital re-admissions. AROC has set a minimum data set recommendation for the collection and examination of patient data. PMH meets the AROC guidelines for patient data collection and descriptive analyses.

Kawasaki disease: a prospective population survey in the UK and Ireland from 2013 to 2015.

OBJECTIVE: Kawasaki disease (KD) is an increasingly common vasculitis with risk of coronary artery aneurysms (CAAs). The last UK survey was in 1990, whereas current epidemiology, treatment patterns and complication rates are unknown. The aim of this study was to address this knowledge gap. METHODS: A British Paediatric Surveillance Unit survey in the UK and Ireland from 1 January 2013 to 28 February 2015 ascertained demographics, ethnicity, seasonal incidence, treatment and complication rates. RESULTS: 553 cases were notified: 389 had complete KD, 46 had atypical KD and 116 had incomplete KD; 2 were diagnosed at postmortem with an incidence of 4.55/100 000 children under 5 years, with a male to female ratio of 1.5:1 and a median age of 2.7 years (2.5 months-15 years). Presentation was highest in January and in rural areas. Most were white (64%), and Chinese and Japanese Asians were over-represented as were black African or African mixed-race children. 94% received intravenous immunoglobulin (IVIG). The overall CAA rate was 19%, and all-cardiac complications affected 28%. Those with CAA received IVIG later than in those without (median 10 days vs 7 days). Those under 1 year had fewer symptoms, but the highest CAA rate (39%). Overall 8 of 512 cases (1.6%) had giant CAA, and 4 of 86 cases (5%) under 1 year of age developed giant CAA. Mortality from KD was 0.36%. CONCLUSIONS: The UK and Ireland incidence of KD has increased and is more frequently seen in winter and rural areas. Delayed IVIG treatment is associated with CAA, suggesting earlier and adjunctive primary treatment might reduce complications to prevent CAA, particularly in the very young.

Supervised practice: a midwife's reflective journey.

The Nursing and Midwifery Council (NMC) (2007) defines supervised practice as a structured and formal programme, devised to provide a midwife whose practice falls short of the required professional standards, with learning opportunities to enrich his/her clinical experience and improve practice. The primary aim is to ensure that the period of development agreed by the Local Supervising Authority Midwifery Officer (LSAMO) in supporting the midwife to improve their knowledge and skills, is subject to scrutiny through assessment, evaluation and reflection. The importance of reflective learning in midwifery practice is well recognised. This article provides the reflective account of a midwife's personal experience of supervised practice.

Oregon nurse staffing law: is it working?

In 2001, Oregon enacted a law mandating the creation of hospital nurse staffing committees to oversee staffing in acute care hospitals. The study design is a descriptive case study (qualitative method) using semistructured interviews and focus groups to assess the law requiring hospital nurse staffing committees to monitor nurse staffing in Oregon. One significant theme of the study was the wide variation among facilities in the way the staffing legislation is viewed, interpreted, understood, appreciated, and implemented. Another was that the chief nursing officer's view of the legislation tended to be the prevailing view expressed by the managers and staff nurses from those same organizations. A significant difference between a functional versus nonfunctional committee was whether the chief nurse viewed the legislation in a positive way and was using the legislation to enhance his/her work.

What do parents and carers think about routine outcome measures and their use? A focus group study of CAMHS attenders.

Currently service user involvement in routine outcomes monitoring has been minimal, particularly in Children's services. There needs to be a more sustained effort to involve service users because of the valuable information that they could provide for service development and improvement. Focus groups were conducted with service users, including parents, carers and young people from a London CAMHS. Their views were elicited on routine outcomes monitoring in general, three specific approaches and suggestions about what else might be important to capture when measuring outcomes. The focus groups raised a number of issues pertinent to routine outcomes monitoring in general, including the reliability of answers, the need for the measures to reflect more than just a tick-box approach and that different people will have different perspectives. Analysis also focused on feedback about the three specific measures discussed. It is important that service users are involved in the process of outcome measurement, from the development of measures, to their application in therapeutic encounters and in service development. Outcome monitoring needs to become a more collaborative process in order that services are measuring what service users think is important, as most would agree that a service should deliver the outcomes that its users want to see.

Developing clinical nurse specialist practice competencies.

BACKGROUND: In 1998, the National Association of Clinical Nurse Specialist (NACNS) developed the first ever core competencies for clinical nurse specialist (CNS) practice. PURPOSE: This article describes the method used to develop, validate, and revise CNS core practice competencies. METHODS: The stepwise method of identifying core CNS competencies included content analysis of CNS position/job descriptions, extensive literature review, development by role experts, first-tier corroboration, second-tier corroboration encompassing stakeholder review, final review/editing, approval by the board of directors, and dissemination. DISCUSSION: The process used by professional organizations to develop competencies and standards varies; however, it should be transparent and consist of adequate review and validation for accuracy and applicability by members of the representative group for whom the standards and competencies apply. CONCLUSIONS: The stepwise method used by the National Association of Clinical Nurse Specialist generated valid CNS core competencies and may be instructive to professional organizations interested in developing competencies and standards.