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1.
Dev Med Child Neurol ; 66(3): 344-352, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37491764

RESUMO

AIM: To establish the burden of respiratory illness in cerebral palsy (CP) on the Western Australian health care system by quantifying the costs of respiratory hospitalizations in children with CP, compared with non-respiratory hospitalizations. METHOD: A 2-year (2014-2015) retrospective study using linked hospital data (excluding emergency department visits), in a population of children with CP in Western Australia aged 18 years and under (median age at hospitalization 7 years; interquartile range 5-12 years). RESULTS: In 671 individuals (57% male) there were 726 emergency hospitalizations, and 1631 elective hospitalizations. Although there were more elective hospitalizations, emergency hospitalizations were associated with longer stays in hospital, and more days in an intensive care unit, resulting in a higher total cost of emergency hospitalizations than elective hospitalizations (total costs: emergency AU$7 748 718 vs elective AU$6 738 187). 'Respiratory' was the leading cause of emergency hospitalizations, contributing to 36% of all emergency admission costs. For a group of high-cost inpatient users (top 5% of individuals with the highest total inpatient costs) the most common reason for hospitalization was 'respiratory'. Where non-respiratory admissions were complicated by an additional respiratory diagnosis, length of stay was greater. INTERPRETATION: Respiratory hospitalizations in CP are a significant driver of health care costs. In the paediatric group, they are a burden for a subgroup of children with CP. WHAT THIS PAPER ADDS: Respiratory illness is the most costly area for unplanned, emergency hospitalizations for children and young people with cerebral palsy. The top 5% of individuals with the highest total inpatient costs account for a disproportionate amount of health care costs.


Assuntos
Paralisia Cerebral , Criança , Humanos , Masculino , Adolescente , Feminino , Estudos Retrospectivos , Paralisia Cerebral/complicações , Paralisia Cerebral/epidemiologia , Paralisia Cerebral/terapia , Austrália , Hospitalização , Custos de Cuidados de Saúde
2.
BMJ Paediatr Open ; 7(1)2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37963680

RESUMO

INTRODUCTION: Food allergy is a major public health challenge in Australia. Despite widespread uptake of infant feeding and allergy prevention guidelines the incidence of peanut allergy in infants has not fallen, and prevalence of peanut allergy in school-aged children continues to rise. Therefore, effective and accessible treatments for peanut allergy are required. There is high-quality evidence for efficacy of oral immunotherapy in children aged 4-17 years old; however, few randomised trials have investigated peanut oral immunotherapy (OIT) in young children. Furthermore, the use of food products for OIT with doses prepared and administered by parents without requiring pharmacy compounding has the potential to reduce costs associated with the OIT product. METHODS AND ANALYSIS: Early Peanut Immunotherapy in Children is an open-label randomised controlled trial of peanut OIT compared with standard care (avoidance) to induce desensitisation in children aged 1-4 years old with peanut allergy. n=50 participants will be randomised 1:1 to intervention (daily peanut OIT for 12 months) or control (peanut avoidance). The primary outcome is the proportion of children in each group with a peanut eliciting dose >600 mg peanut protein as assessed by open peanut challenge after 12 months, analysed by intention to treat. Secondary outcomes include safety as assessed by frequency and severity of treatment-related adverse events, quality of life measured using age-appropriate food allergy-specific questionnaires and immunological changes during OIT. ETHICS: The trial is approved by the Child and Adolescent Health Service Human Research Ethics Committee and prospectively registered with the Australia and New Zealand Clinical Trials Registry. DISSEMINATION: Trial outcomes will be published in a peer-review journal and presented and local and national scientific meetings. TRIAL REGISTRATION NUMBER: ACTRN12621001001886.


Assuntos
Dessensibilização Imunológica , Hipersensibilidade a Amendoim , Pré-Escolar , Humanos , Lactente , Administração Oral , Arachis , Dessensibilização Imunológica/efeitos adversos , Dessensibilização Imunológica/métodos , Hipersensibilidade a Amendoim/prevenção & controle , Qualidade de Vida , Ensaios Clínicos Pragmáticos como Assunto
3.
Chron Respir Dis ; 20: 14799731231211852, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37934787

RESUMO

OBJECTIVE: To identify the characteristics of people with chronic obstructive pulmonary disease (COPD) who require hospitalisation for exacerbations. METHODS: People with COPD were recruited either during hospitalisation or from out-patient respiratory medicine clinics. Hospital admissions were tracked throughout the 5-months recruitment period. For participants who were admitted, hospital readmissions were tracked for at least 30 days following discharge. Participants were grouped as either needing; (i) no hospital admission during the study period (no admission; ø-A), (ii) one or more hospital admissions during the study period but no readmission within 30 days of discharge (no rapid readmission; ø-RR) or (iii) one or more hospital admissions with a readmission within 30 days of discharge (rapid readmission; RR). RESULTS: Compared with the ø-A group (n=211), factors that independently increased the risk of ø-RR (n=146) and/or RR (n=57) group membership were being aged >60 years, identifying as an Indigenous person (relative risk ratio, 95% confidence interval 7.8 [1.8 to 34.0]) and the use of a support person or community service for activities of daily living (1.5 [1.0 to 2.4]. A body mass index ≥25 kg/m2 was protective. CONCLUSIONS: Variables recorded at the bedside or in clinic provided information on hospitalisation risk.


Assuntos
Atividades Cotidianas , Doença Pulmonar Obstrutiva Crônica , Humanos , Hospitalização , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Doença Pulmonar Obstrutiva Crônica/terapia , Readmissão do Paciente , Alta do Paciente , Progressão da Doença
4.
Palliat Care Soc Pract ; 17: 26323524231205323, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37901153

RESUMO

Background: Public health approaches to palliative and end-of-life care focus on enhancing the integration of services and providing a comprehensive approach that engages the assets of local communities. However, few studies have evaluated the relative costs and benefits of providing care using these service models. Objectives: To assess the effect on healthcare usage of a community-based palliative care program ('Compassionate Communities Connectors') where practical and social support was delivered by community volunteers to people living with advanced life-limiting illnesses in regional Western Australia. Design: Controlled before-and-after study/Cost-consequence analysis. Methods: A total of 43 community-based patients participated in the program during the period 2020-2022. A comparator population of 172 individuals with advanced life-limiting illnesses was randomly selected from usage data from the same set of health services. Results: Relative to controls, the intervention group had lower hospitalizations per month [Incidence rate ratio (IRR): 0.37; 95% CI: 0.18-0.77, p = 0.007], less hospital days per month (IRR: 0.23; 95% CI: 0.11-0.49, p < 0.001) and less emergency presentations (IRR: 0.56; 95% CI: 0.34-0.94, p = 0.028. The frequency of outpatient contacts overall was two times higher for the intervention group (IRR: 2.07; 95% CI: 1.11-3.86, p = 0.022), indicating the Connector program may have shifted individuals away from the hospital system and toward community-based care. Estimated net savings of $AUD 518,701 would be achieved from adopting the Connector program, assuming enrollment of 100 patients over an average 6-month participation period. Conclusion: This combined healthcare usage and economic analysis of the 'Compassionate Communities Connectors' program demonstrates the benefits of optimizing palliative care services using home-based and community-centered interventions, with gains for the health system through improved patient outcomes and reduced total healthcare costs (including fewer hospitalizations and readmissions). These findings, coupled with the other published results, suggest that investment in the Connectors program has the capacity to reduce net health sector expenditure while also improving outcomes for people with life-limiting illnesses. Trial Registration: Australian and New Zealand Clinical Trial Registry: ACTRN12620000326998.

5.
Palliat Med ; 37(9): 1402-1412, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37553906

RESUMO

BACKGROUND: Motor neurone disease is a rare but debilitating illness with incomplete evidence regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs. AIM: To identify the symptom prevalence and severity experienced by patients with motor neurone disease. Secondary objectives were to examine differences in symptom burden and clusters according to phenotype, functional status, palliative care provision and those in their last months of life. DESIGN: A point prevalence study assessing patient-reported symptoms using a modified IPOS-Neuro assessment tool, incorporating 41 symptom items. SETTING/PARTICIPANTS: Patients with motor neurone disease attending the State-wide Progressive Neurological Disease Service or inpatient unit at Calvary Health Care Bethlehem, Melbourne Australia, from March to December 2021. RESULTS: A total of 102 patients participated, the majority diagnosed with lumber-onset (30.4%), bulbar-onset (28.4%) and cervical-onset (25.5%) phenotypes. Patients experienced a median of 17 symptoms (range 2-32) with a median of 3 symptoms rated as severe/overwhelming (range 0-13). Motor and functional symptoms predominated, with differences in symptom clusters present according to phenotype. Patients had a higher number of severe/overwhelming symptoms if they were accessing palliative care services (p = 0.005), in their last 6 months of life (p = 0.003) and experiencing moderate or severe functional impairment (p < 0.001). CONCLUSIONS: Patients with motor neurone disease report high symptom burden. A validated motor neurone disease-specific symptom assessment tool is needed to accurately assess patients, including important variations in symptom clusters according to phenotype. Further research must focus on evidence-based treatment guidelines for symptoms experienced commonly and severely.


Assuntos
Doença dos Neurônios Motores , Cuidados Paliativos , Humanos , Prevalência , Estudos Transversais , Síndrome , Doença dos Neurônios Motores/epidemiologia , Doença dos Neurônios Motores/terapia , Medidas de Resultados Relatados pelo Paciente
6.
Acta Paediatr ; 112(10): 2182-2188, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37485861

RESUMO

AIM: The incidence of anaphylaxis is increasing globally in tandem with changing environmental and lifestyle factors. There is very limited data on very early childhood presentations. We aim to assess changes in rates, characteristics and management of infant anaphylaxis in a paediatric ED over a 15-year period. METHODS: We conducted a retrospective study of children <2 years of age who presented with verified anaphylaxis comparing cases in years 2003-2007 with those in 2013-2017. Standardised information was collected on demographics, clinical presentation, management and triggers. RESULTS: Manually confirmed anaphylaxis rates in <2 year olds increased from 3.6 to 6.2 per 104 population (OR 1.7, 95% CI: 1.3-2.7; p < 0.001) with the greatest increase in <1 year olds. Anaphylaxis severity increased between 2003-2007 and 2013-2017 (OR 2.3, 95% CI: 1.2-4.3; p = 0.018). Failure to administer adrenaline was reduced in 2013-2017 (p = 0.007). Food was the leading anaphylaxis trigger (97.85%). CONCLUSION: This is the first study to suggest an increase in the incidence and severity of ED anaphylaxis presentations in children aged <2 years. Increased awareness of specific characteristics in this age group is required to facilitate timely recognition and optimal management. Further large-scale studies are warranted to understand underlying environmental drivers and find prevention strategies to reduce the burden of disease.


Assuntos
Anafilaxia , Hipersensibilidade Alimentar , Lactente , Criança , Pré-Escolar , Humanos , Anafilaxia/diagnóstico , Anafilaxia/epidemiologia , Anafilaxia/etiologia , Estudos Retrospectivos , Epinefrina/uso terapêutico , Hipersensibilidade Alimentar/epidemiologia , Serviço Hospitalar de Emergência
7.
Womens Health (Lond) ; 19: 17455057231184507, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37431205

RESUMO

BACKGROUND: Positive maternal mental health during the perinatal period contributes to general well-being and positive emotional bonds with the child, encouraging an optimal developmental trajectory. Online interventions to enhance maternal well-being and develop coping skills, such as meditation-based interventions, can be a low-cost way to improve mother and child outcomes. However, this depends on end-user engagement. To date, there is limited evidence about women's willingness to engage and preferences for online programmes. OBJECTIVES: This study explored pregnant women's attitudes towards and likelihood to undertake minimal online well-being training programmes (mindfulness, self-compassion, or general relaxation), engagement barriers and enablers, and programme structure preferences. DESIGN: A mixed methods triangulation design was undertaken using a validating quantitative model. Quantile regressions were applied to the quantitative data. Content analysis was undertaken for the qualitative data. METHODS: Consenting pregnant women (n = 151) were randomized equally to read about three online programme types. Participants were sent an information leaflet, tested by a consumer panel prior to distribution. RESULTS: Participants generally held positive attitudes about all three types of interventions, with no statistically significant differences in preferences between programme types. Participants appreciated the importance of mental health and were receptive to fostering skills to support their emotional well-being and stress management. The most frequent perceived barriers were lack of time, tiredness, and forgetfulness. Programme structure preferences indicated one to two modules per week, less than 15 min in duration, and over 4 weeks. Programme functionality, such as regular reminders and easy accessibility, is important to end users. CONCLUSION: Our findings reinforce the importance of determining participant preferences in designing and communicating engaging interventions for perinatal women. This research contributes to the understanding of population-based interventions that can be provided as simple, scalable, cost-effective, and home-based activities in pregnancy for the benefit of individuals, their families, and society more broadly.


Assuntos
Adaptação Psicológica , Saúde Mental , Gravidez , Criança , Feminino , Humanos , Mães , Atitude
9.
Community Dent Oral Epidemiol ; 51(6): 1241-1249, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37306125

RESUMO

OBJECTIVES: This study aims to conduct a process evaluation of the Kimberley Dental Team (KDT), a not-for-profit, volunteer organization providing care to remote Aboriginal communities in Western Australia. METHODS: A logic model was constructed to detail the operational context of the KDT model. Subsequently, the fidelity (the extent to which each of the programme's elements were implemented as planned), dose (types and quantity of services provided) and reach (demographic characteristics and communities serviced) of the KDT model were evaluated using service data, deidentified clinical records and volunteer rosters maintained by KDT from 2009 to 2019. Trends and patterns of service provision were analysed using total counts and proportions over time. A Poisson regression model was used to explore changed in the rates of surgical treatment over time. The associations between volunteer activity and service provision was also investigated using correlation coefficients and linear regression. RESULTS: A total of 6365 patients (98% identifying as Aboriginal or Torres Strait Islander) were seen over the 10-year period with services being provided across 35 different communities in the Kimberley. Most services were provided to school-aged children, consistent with the programme's objectives. The peak preventive, restorative and surgical rates occurred among school-aged children, young adults and older adults respectively. A trend was observed indicating a reducing rate of surgical procedures from 2010 to 2019 (p < .001). The volunteer profile showed significant diversity beyond the conventional dentist-nurse structure and 40% being repeat volunteers. CONCLUSIONS: The KDT programme maintained a strong focus on service provision to school-aged children over the last decade with the educational and preventive components being central to the care being provided. This process evaluation found that the dose and reach of the KDT model grew with an increase in resources and was adaptive to perceived community need. The model was shown to evolve through gradual structural adaptations contributing to its overall fidelity.


Assuntos
Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Atenção à Saúde , Idoso , Criança , Humanos , Adulto Jovem , Austrália , Voluntários , Austrália Ocidental
10.
BMJ Open ; 13(5): e068816, 2023 05 11.
Artigo em Inglês | MEDLINE | ID: mdl-37169503

RESUMO

OBJECTIVES: To determine the feasibility of an intensive interdisciplinary programme in improving goal and motor outcomes for preschool-aged children with non-progressive neurodisabilities. The primary hypothesis was that the intervention would be feasible. DESIGN: A single group feasibility study. SETTING: An Australian paediatric community therapy provider. PARTICIPANTS: Forty children were recruited. Inclusion criteria were age 2-5 years with a non-progressive neurodisability, Gross Motor Function Classification System (GMFCS) levels III-V or equivalent, and goals relating to mobility, communication and upper limb function. Exclusion criteria included orthopaedic surgery in the past 6 months, unstable hip subluxation, uncontrolled seizure disorder or treadmill training in the past month. INTERVENTION: A goal-directed programme of three 2-hour sessions per week for 4 weeks (24 hours total). This consisted of treadmill and overground walking, communication practice, and upper limb tasks tailored by an interdisciplinary team. PRIMARY AND SECONDARY OUTCOME MEASURES: Limited-efficacy measures from preintervention (T1) to postintervention (T2) and 4-week follow-up (T3) included the Goal Attainment Scaling (GAS), Canadian Occupational Performance Measure (COPM), Gross Motor Function Measure (GMFM-66) and 10-Metre Walk Test (10MWT). Acceptability, demand, implementation and practicality were also explored. RESULTS: There were improvements at T2 compared with T1 for all limited-efficacy measures. The GAS improved at T2 (mean difference (MD) 27.7, 95% CI 25.8 to 29.5) as well as COPM performance (MD 3.2, 95% CI 2.8 to 3.6) and satisfaction (MD 3.3, 95% CI 2.8 to 3.8). The GMFM-66 (MD 2.3, 95% CI 1.0 to 3.5) and 10MWT (median difference -2.3, 95% CI -28.8 to 0.0) improved at T2. Almost all improvements were maintained at T3. Other feasibility components were also demonstrated. There were no adverse events. CONCLUSIONS: An intensive interdisciplinary programme is feasible in improving goal and motor outcomes for preschool children with neurodisabilities (GMFCS III-V or equivalent). A randomised controlled trial is warranted to establish efficacy. TRIAL REGISTRATION NUMBER: ACTRN12619000064101.


Assuntos
Paralisia Cerebral , Objetivos , Humanos , Criança , Pré-Escolar , Estudos de Viabilidade , Austrália , Canadá , Caminhada
11.
Personal Ment Health ; 17(4): 300-312, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36960575

RESUMO

This study assessed the effect of a mentalisation-based therapy (MBT) treatment programme on the utilisation of Western Australian public hospitals for mental health presentations over an 18-month period. Hospital data included the number of visits to the emergency department (ED), the number of inpatient admissions to hospital and length of stay of the admissions. Participants included 76 adolescents aged 13-17 years old, who presented with borderline personality disorder (BPD) traits. The Touchstone treatment programme is a time-limited intensive programme that utilises MBT in the context of a therapeutic community. Hospital data for the participants were collected and analysed from three time points; 6 months prior to attending the programme, during the 6-month programme (active treatment) and 6 months after the programme. Results found a statistically significant decrease in hospital utilisation from pre to post programme, with a decline in ED visits, inpatient admissions and admission length of stay. This study presents promising preliminary evidence for the effectiveness of an intensive MBT programme as an intervention for adolescents with BPD features and has significant implications for the public health system in terms of providing effective community-based treatment for this difficult to treat population as well as reducing pressure on tertiary care.


Assuntos
Transtorno da Personalidade Borderline , Comunidade Terapêutica , Humanos , Adolescente , Austrália Ocidental , Transtorno da Personalidade Borderline/terapia , Transtorno da Personalidade Borderline/psicologia , Austrália , Saúde Mental
12.
J Physiother ; 69(2): 108-113, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36914524

RESUMO

QUESTION: In adults with advanced lung disease, do the 6-minute walk test (6MWT) and 1-minute sit-to-stand test (1minSTS) elicit similar cardiorespiratory responses? Can the 6-minute walk distance (6MWD) be estimated from the 1minSTS result? DESIGN: Prospective observational study using data collected during routine clinical practice. PARTICIPANTS: Eighty adults (43 males) with advanced lung disease, a mean age of 64 years (SD 10) and a mean forced expiratory volume in 1 second of 1.65 L (SD 0.77). OUTCOME MEASURES: Participants completed a 6MWT and a 1minSTS. During both tests, oxygen saturation (SpO2), pulse rate, dyspnoea and leg fatigue (Borg 0 to 10) were recorded. RESULTS: Compared with the 6MWT, the 1minSTS resulted in higher nadir SpO2 (MD 4%, 95% CI 3 to 5), lower end-test pulse rate (MD -4 beats/minute, 95% CI -6 to -1), similar dyspnoea (MD -0.3, 95% CI -0.6 to 0.1) and greater leg fatigue (MD 1.1, 95% CI 0.6 to 1.6). Among the participants who demonstrated severe desaturation (SpO2 nadir < 85%) on the 6MWT (n = 18), five and ten participants were classified as moderate (nadir 85 to 89%) or mild desaturators (nadir ≥ 90%), respectively, on the 1minSTS. The relationship between the 6MWD and 1minSTS was: 6MWD (m) = 247 + (7 × number of transitions achieved during the 1minSTS) with poor predictive ability (r2 = 0.44). CONCLUSION: The 1minSTS elicited less desaturation than the 6MWT and classified a smaller proportion of people as 'severe desaturators' on exertion. It is therefore inappropriate to use the nadir SpO2 recorded during a 1minSTS to make decisions about whether strategies are needed to prevent severe transient exertional desaturation during walking-based exercise. Further, the extent to which performance on the 1minSTS can estimate a person's 6MWD is poor. For these reasons, the 1minSTS is unlikely to be helpful when prescribing walking-based exercise.


Assuntos
Teste de Esforço , Doença Pulmonar Obstrutiva Crônica , Masculino , Humanos , Adulto , Pessoa de Meia-Idade , Teste de Caminhada , Teste de Esforço/métodos , Dispneia , Caminhada/fisiologia , Fadiga , Tolerância ao Exercício
13.
J Health Serv Res Policy ; 28(2): 89-99, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36617492

RESUMO

BACKGROUND: The impact of hospital building design on patients, families and nurses related to nursing care interactions is not well understood. This study reports a pre-post intervention study to understand the effects of the move to a new children's hospital in Perth, Australia, on nurse workflow activities and on patient, family, and nurse experiences. METHODS: We used a pre-post explanatory sequential design involving observation of nurse work tasks; measurement of the Practice Environment Scale and Nurse Work Index; weekly surveys of nurse, patient and family experiences; and nurse focus groups and interviews with patients and families. Survey data were analysed using linear regression; qualitative data analysis used a thematic approach. RESULTS: Nurse time spent walking almost doubled (p < 0.001), from an estimated 10 min at T1 (pre-move) to around 20 min at T4 (12 months post-move), but there was no difference in nurse time providing patient care (p = 0.114). The Practice Environment Scale and Nurse Work Index showed significantly reduced scores for nursing foundations for quality of care (adjusted mean difference -0.08, p = 0.016) and staffing and resource adequacy (adjusted mean difference -0.19, p < 0.001).This fall was mirrored in nurse experience surveys with a reduction in mean scores from T1 to T3 (3 months post-move) of -0.7 (p < 0.001) and from T1 to T4 of -0.4 (p = 0.002). Thematic analysis of qualitative data found that initial challenges appeared to reduce over time. Nurses reported difficulties managing workflow in the new wards and feelings of exhaustion at T3, but this changed to more positive accounts at T4. For patients and families there was a tension between leaving the old and familiar, enjoying the light and space of the new and shared observations that nurses appeared to be busier at T3. At T4, these experiences had changed to 'being a family in hospital' and confidence that a nurse was always close by. CONCLUSIONS: Both benefits and challenges of the new hospital design were encountered from the perspective of nurses, patients, and families. Nurses spent double the time walking in the new environment, but time spent providing patient care was unchanged. Over time, the initial practice challenges reduced as nurses adapted to working in the new environment. TRIAL REGISTRATION: ACTRN12618000775213.


Assuntos
Hospitais Pediátricos , Pacientes , Humanos , Criança , Grupos Focais , Inquéritos e Questionários , Austrália
14.
Child Care Health Dev ; 49(4): 760-768, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36513964

RESUMO

AIM: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL). METHOD: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child parent-proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models. RESULTS: Fifty-two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self-care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P < 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011). CONCLUSIONS: Collaborative goal setting is an integral part of family-centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences.


Assuntos
Paralisia Cerebral , Rizotomia , Humanos , Rizotomia/métodos , Qualidade de Vida , Objetivos , Austrália , Canadá , Paralisia Cerebral/reabilitação , Resultado do Tratamento
15.
J Asthma ; 60(2): 368-376, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35263208

RESUMO

Objective: Early and accurate recognition of asthma exacerbations reduces the duration and risk of hospitalization. Current diagnostic methods depend upon patient recognition of symptoms, expert clinical examination, or measures of lung function. Here, we aimed to develop and test the accuracy of a smartphone-based diagnostic algorithm that analyses five cough events and five patient-reported features (age, fever, acute or productive cough and wheeze) to detect asthma exacerbations.Methods: We conducted a double-blind, prospective, diagnostic accuracy study comparing the algorithm with expert clinical opinion and formal lung function testing. Results: One hundred nineteen participants >12 years with a physician-diagnosed history of asthma were recruited from a hospital in Perth, Western Australia: 46 with clinically confirmed asthma exacerbations, 73 with controlled asthma. The groups were similar in median age (54yr versus 60yr, p=0.72) and sex (female 76% versus 70%, p=0.5). The algorithm's positive percent agreement (PPA) with the expert clinical diagnosis of asthma exacerbations was 89% [95% CI: 76%, 96%]. The negative percent agreement (NPA) was 84% [95% CI: 73%, 91%]. The algorithm's performance for asthma exacerbations diagnosis exceeded its performance as a detector of patient-reported wheeze (sensitivity, 63.7%). Patient-reported wheeze in isolation was an insensitive marker of asthma exacerbations (PPA=53.8%, NPA=49%). Conclusions: Our diagnostic algorithm accurately detected the presence of an asthma exacerbation as a point-of-care test without requiring clinical examination or lung function testing. This method could improve the accuracy of telehealth consultations and might be helpful in Asthma Action Plans and patient-initiated therapy.


Assuntos
Asma , Feminino , Humanos , Algoritmos , Asma/tratamento farmacológico , Tosse , Progressão da Doença , Medidas de Resultados Relatados pelo Paciente , Estudos Prospectivos , Sons Respiratórios , Smartphone , Método Duplo-Cego
16.
Disabil Rehabil ; 45(10): 1646-1654, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-35544592

RESUMO

PURPOSE: To determine the feasibility of using parent-reported outcome measures of the Paediatric Pain Profile (PPP), Sleep Disturbance Scale for Children (SDSC) and Care and Comfort Hypertonicity Questionnaire (CCHQ) as repeated outcome measures of change at weekly intervals for children with dyskinetic cerebral palsy (CP). The secondary aim was to explore the efficacy of individualised movement intervention. MATERIAL AND METHODS: In this pilot feasibility study a single subject research design was utilised. Three children with dyskinetic CP, completed 5 weeks of parent-reported baseline assessments, 8 weekly sessions of intervention and 5 weeks of follow up. RESULTS: All children completed 18 weeks of the study, with no missing data. There was evidence of parent-reported improvements in their child's pain and care and comfort between the baseline and intervention phases. CONCLUSIONS: The PPP, SDSC and CCHQ were feasible to assess pain, sleep and comfort before and after an intervention in children with dyskinetic CP. There is preliminary evidence that individualised movement intervention as little as once a week may help improve pain, sleep and improve ease of care and comfort. IMPLICATIONS FOR REHABILITATIONThe Paediatric Pain Profile is feasible to identify and monitor pain, as frequently as weekly, in children with dyskinetic cerebral palsy (CP).There is preliminary evidence that movement can decrease pain in children with dyskinetic CP.Assessments and treatment in this group may be interrupted due to their complex health issues which may be a limitation when collecting repeated measures.


Assuntos
Paralisia Cerebral , Criança , Humanos , Paralisia Cerebral/complicações , Qualidade de Vida , Projetos de Pesquisa , Estudos de Viabilidade , Dor/complicações
17.
BMJ Open ; 12(11): e063296, 2022 11 25.
Artigo em Inglês | MEDLINE | ID: mdl-36428013

RESUMO

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.


Assuntos
Paralisia Cerebral , Criança , Humanos , Paralisia Cerebral/diagnóstico , Estudos de Coortes , Estudos Retrospectivos , Estudos Longitudinais , Intervenção Educacional Precoce
18.
NPJ Digit Med ; 5(1): 167, 2022 Nov 03.
Artigo em Inglês | MEDLINE | ID: mdl-36329127

RESUMO

Fetal Cardiography is usually performed using in-hospital Cardiotocographic (CTG) devices to assess fetal wellbeing. New technologies may permit home-based, self-administered examinations. We compared the accuracy, clinical interpretability, and user experience of a patient-administered, wireless, fetal heartbeat monitor (HBM) designed for home use, to CTG. Initially, participants had paired HBM and CTG examinations performed in the clinic. Women then used the HBM unsupervised and rated the experience. Sixty-three women had paired clinic-based HBM and CTG recordings, providing 6982 fetal heart rate measures for point-to-point comparison from 126 min of continuous recording. The accuracy of the HBM was excellent, with limits of agreement (95%) for mean fetal heart rate (FHR) between 0.72 and -1.78 beats per minute. The FHR was detected on all occasions and confirmed to be different from the maternal heart rate. Both methods were equally interpretable by Obstetricians, and had similar signal loss ratios. Thirty-four (100%) women successfully detected the FHR and obtained clinically useful cardiographic data using the device at home unsupervised. They achieved the required length of recording required for non-stress test analysis. The monitor ranked in the 96-100th percentile for usability and learnability. The HBM is as accurate as gold-standard CTG, and provides equivalent clinical information enabling use in non-stress test analyses conducted outside of hospitals. It is usable by expectant mothers with minimal training.

19.
Front Pediatr ; 9: 736018, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34869099

RESUMO

Background: Diagnostic errors are a global health priority and a common cause of preventable harm. There is limited data available for the prevalence of misdiagnosis in pediatric acute-care settings. Respiratory illnesses, which are particularly challenging to diagnose, are the most frequent reason for presentation to pediatric emergency departments. Objective: To evaluate the diagnostic accuracy of emergency department clinicians in diagnosing acute childhood respiratory diseases, as compared with expert panel consensus (reference standard). Methods: Prospective, multicenter, single-blinded, diagnostic accuracy study in two well-resourced pediatric emergency departments in a large Australian city. Between September 2016 and August 2018, a convenience sample of children aged 29 days to 12 years who presented with respiratory symptoms was enrolled. The emergency department discharge diagnoses were reported by clinicians based upon standard clinical diagnostic definitions. These diagnoses were compared against consensus diagnoses given by an expert panel of pediatric specialists using standardized disease definitions after they reviewed all medical records. Results: For 620 participants, the sensitivity and specificity (%, [95% CI]) of the emergency department compared with the expert panel diagnoses were generally poor: isolated upper respiratory tract disease (64.9 [54.6, 74.4], 91.0 [88.2, 93.3]), croup (76.8 [66.2, 85.4], 97.9 [96.2, 98.9]), lower respiratory tract disease (86.6 [83.1, 89.6], 92.9 [87.6, 96.4]), bronchiolitis (66.9 [58.6, 74.5], 94.3 [80.8, 99.3]), asthma/reactive airway disease (91.0 [85.8, 94.8], 93.0 [90.1, 95.3]), clinical pneumonia (63·9 [50.6, 75·8], 95·0 [92·8, 96·7]), focal (consolidative) pneumonia (54·8 [38·7, 70·2], 86.2 [79.3, 91.5]). Only 59% of chest x-rays with consolidation were correctly identified. Between 6.9 and 14.5% of children were inappropriately prescribed based on their eventual diagnosis. Conclusion: In well-resourced emergency departments, we have identified a previously unrecognized high diagnostic error rate for acute childhood respiratory disorders, particularly in pneumonia and bronchiolitis. These errors lead to the potential of avoidable harm and the administration of inappropriate treatment.

20.
Artigo em Inglês | MEDLINE | ID: mdl-34501709

RESUMO

This study aims to understand the experience and impact of the initial COVID-19 lockdown in young families with children aged below 4 years. Free text questions were administered to participants in the ORIGINS (Australia) and Born in Bradford (UK) cohort studies to collect qualitative information on worries, concerns and enjoyable experiences during the pandemic. A total of 903 (400 for ORIGINS and 503 for BiB) participants completed the two surveys during April 2020. Despite varying in geography, levels of socio-economic disadvantage and their situational context during the pandemic, respondents from both cohorts reported similar worries and challenges during the lockdown period, including: employment/finances, health anxiety, mental health and social isolation, caring for children and child development. Families across the globe experienced both positive and negative immediate impacts of COVID-19. Population-based data can be used to inform the development of support services, public health campaigns and universal interventions to assist families in future health crises.


Assuntos
COVID-19 , Criança , Pré-Escolar , Controle de Doenças Transmissíveis , Humanos , Pandemias , SARS-CoV-2 , Reino Unido
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