ORCID Profile
0000-0002-1692-4019
Current Organisations
Royal Children's Hospital Melbourne
,
University of Colorado at Boulder
,
National Renewable Energy Laboratory
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Publisher: Walter de Gruyter GmbH
Date: 24-05-2019
Abstract: Successful transition to adult healthcare is particularly important for congenital heart disease (CHD) patients who have undergone palliative surgery, as they risk adverse events if not followed closely. This study examines young people at the worst end of the CHD spectrum who are born with a single ventricle (pumping heart chamber), and who undergo a series of operations that culminate in the Fontan surgical procedure. To explore adolescents with a Fontan circulation, and their parents’, readiness for transition to adult care and pre-implementation of a transition program. Seventeen adolescents (15–18 years) and 15 of their parents completed questionnaires at the start of their first transition clinic. Adolescents reported poor knowledge about their Fontan circulation, and 41% had a poor understanding of the purpose of their medications/treatments. Over half of the adolescents had poor knowledge around medical help-seeking (when, who, how). Most reported feeling comfortable with discussing their medical issues with their cardiologist, but considerably less so about sensitive adolescent issues, in particular, emotional wellbeing. Parents reported high levels of anxiety around transition to adult care services. Findings pre-program indicate poor adolescent health knowledge, a lack of focus in health services on emotional wellbeing and high parental anxiety. These findings highlight the need for dedicated programs that focus on early preparation, parental involvement and acknowledgment, transition as a process, strong integration and prioritisation in the health system with a youth-friendly and holistic focus, in particular, around emotional wellbeing.
Publisher: Wiley
Date: 30-12-2022
DOI: 10.1111/PETR.14213
Abstract: This study aimed to evaluate the transition to adult care program instituted for liver transplant recipients (LTRs) at a large tertiary pediatric hospital in Melbourne, Australia. Evaluation included the change in a Global Assessment Measure (GAM) before and after the transition program, satisfaction with the program, and measures of transition success including rejection rates and attendance at appointments post‐transfer. We hypothesized that the introduction of our structured transition program would improve disease understanding, health system understanding, and self‐care. We also hypothesized that those who had undergone the transition program would have lower failure to attend rates and lower rates of rejection than historical controls. A LTR transition program was instituted at our service from 2013 to 2015. The program involved initial assessment of competencies with a Global Assessment Measure (GAM), followed by the introduction of a personalized goal setting program addressing issues identified in dedicated transition clinics. Assessment of competencies was compared between the commencement of the program and immediately prior to transfer. Patient satisfaction with the transition process was assessed at an interview 6–12 months after transfer to the adult service. Rejection rates and failure to attend rates were compared between the intervention group and a group of LTRs who did not receive the intervention. Twenty‐eight LTRs participated in the study 20 received the transition intervention and 8 served as controls. Within the intervention group, all domains of transition competency and reported anxiety regarding transferring had significantly improved at the conclusion of the intervention and all reported satisfaction with the transition program with most (81%) reporting readiness to transfer. There were no significant differences in rejection rates or failure to attend rates between those who did and did not receive the transition intervention. A longitudinal holistic transition program has the potential to positively impact the competencies and readiness of LTRs to successful transition and transfer to adult care.
Publisher: BMJ
Date: 06-2021
DOI: 10.1136/BMJOPEN-2020-048340
Abstract: More than 10% of adolescents live with a chronic disease or disability that requires regular medical follow-up as they mature into adulthood. During the first 2 years after adolescents with chronic conditions are transferred to adult hospitals, non-adherence rates approach 70% and emergency visits and hospitalisation rates significantly increase. The purpose of the Bridge study is to prospectively examine associations of transition readiness and care experiences with transition success: young patients’ health, health-related quality of life (HRQoL) and adherence to medical appointments as well as costs of care. In addition, we will track patients’ growing independence and educational and employment pathways during the transition process. Bridge is an international, prospective, observational cohort study. Study participants are adolescents with a chronic health condition or disability and their parents/guardians who attended the New Children’s Hospital in Helsinki, Finland, or the Royal Children’s Hospital (RCH) in Melbourne, Australia. Baseline assessment took place approximately 6 months prior to the transfer of care and follow-up data will be collected 1 year and 2 years after the transfer of care. Data will be collected from patients’ hospital records and from questionnaires completed by the patient and their parent/guardian at each time point. The primary outcomes of this study are adherence to medical appointments, clinical health status and HRQoL and costs of care. Secondary outcome measures are educational and employment outcomes. The Ethics Committee for Women’s and Children’s Health and Psychiatry at the Helsinki University Hospital (HUS/1547/2017) and the RCH Human Research Ethics Committee (38035) have approved the Bridge study protocol. Results will be published in international peer-reviewed journals and summaries will be provided to the funders of the study as well as patients and their parents/guardians. NCT04631965 .
Publisher: Wiley
Date: 27-02-2019
DOI: 10.1002/WENE.339
Abstract: Recent efforts to reduce energy consumption and greenhouse gas emissions have resulted in the development of sustainable, smart districts with highly energy efficient buildings, renewable distributed energy resources (DERs), and support for alternative modes of transportation. However, there is typically little if any coordination between the district developers and the local utility. Most attention is paid to the district's annual net load and generation without considering their instantaneous imbalance or the connecting network's state. This presents an opportunity to learn lessons from the design of distribution feeders for districts characterized by low loads and high penetrations of DERs that can be applied to the distribution grid at large. The aim of this overview is to summarize current practices in sustainable district planning as well as advances in modeling and design tools for incorporating the power distribution system into the district planning process. Recent developments in the modeling and optimization of district power systems, including their coordination with multi‐energy systems and the impact of high penetration levels of renewable energy, are introduced. Sustainable districts in England and Japan are reviewed as case studies to illustrate the extent to which distribution system planning has been considered in practice. Finally, newly developed building‐to‐grid modeling tools that can facilitate coordinated district and power system design with utility involvement are introduced, along with suggestions for future research directions. This article is categorized under: Wind Power Systems and Infrastructure Energy Policy and Planning Systems and Infrastructure Energy Efficiency Systems and Infrastructure
Publisher: Springer Science and Business Media LLC
Date: 07-06-2023
Publisher: Wiley
Date: 17-12-2020
DOI: 10.1111/DMCN.14766
Abstract: First, to understand the barriers to achieving effective transition and the supports required from the perspective of parents and carers, adolescents with intellectual disability and/or autism spectrum disorder and co‐existing mental health disorders (often termed ‘dual disability’), and those who provide services to this group. Second, to develop an informed model of shared care to improve the transition of adolescents with dual disabilities. Carers and a young adult with a dual disability were surveyed about their experience of transition care. Other key stakeholders including paediatricians, general practitioners, and policy makers were also interviewed. These data informed the model of care. Paediatricians and general practitioners reported difficulties establishing working relationships to foster smooth transitions, and carers reported lacking a regular general practitioner with adequate expertise to care for people with dual disabilities. A process of shared care between paediatricians and general practitioners was developed and initiated by a dedicated transition manager, who assisted with care coordination and service linkages. Standardized clinical assessment tools were also introduced to determine patient and carer support needs. This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early transition planning, consistent methods of assessing patient and carer needs, and shared care. Adolescents with co‐occurring disabilities require a collaborative health and disability service interface. Fearless, Tearless Transition is a new approach to transitioning adolescents with dual disabilities from paediatric to adult care. Carers of adolescents with dual disabilities require support navigating and negotiating services. Engaging general practitioners and paediatricians in shared care early during the transition process is essential.
Publisher: Walter de Gruyter GmbH
Date: 26-09-2018
Abstract: Successfully transitioning to adult care is important for congenital heart disease (CHD) patients, particularly those at the worst end of the spectrum with a Fontan circulation, as their ongoing health engagement affects their health outcomes. Yet, there is a lack of literature exploring patient perspectives about their transition experiences, and what helps or hinders successful transition to adult care. Young adults with a Fontan circulation (n = 18) from the Australian and New Zealand Fontan Registry participated in in-depth phone interviews. Thematic analyses were used to analyze the qualitative interview data. We identified six key themes which stood out from patient experiences, including differences between pediatric and adult congenital cardiac care, the need for preparation through formal transition programs, and the important role of support systems. To become active managers of their healthcare and remain engaged with the healthcare system, young people would benefit from coordinated efforts between pediatric and adult care to formally prepare them for transition to adult care. This should include involvement from their support network and ongoing education about their health condition. The study highlights the importance of studying patient perspectives through qualitative research to better inform health service provision in the CHD space.
Publisher: Elsevier BV
Date: 2020
DOI: 10.1016/J.HLC.2019.09.010
Abstract: The Fontan circulation describes the circulatory state resulting from an operation in congenital heart disease where systemic venous return is directed to the lungs without an intervening active pumping chamber. As survival increases, so too does recognition of the potential health challenges. This document aims to allow clinicians, people with a Fontan circulation, and their families to benefit from consensus agreement about management of the person with a Fontan circulation. The document was crafted with input from a multidisciplinary group of health care providers as well as in iduals with a Fontan circulation and families. It is hoped that the shared common vision of long-term wellbeing will continue to drive improvements in care and quality of life in this patient population and eventually translate into improved survival. KEYPOINTS.
Publisher: MDPI AG
Date: 21-08-2019
DOI: 10.3390/EN12173204
Abstract: Electric utility residential demand response programs typically reduce load a few times a year during periods of peak energy use. In the future, utilities and consumers may monetarily and environmentally benefit from continuously shaping load by alternatively encouraging or discouraging the use of electricity. One way to shape load and introduce elasticity is to broadcast forecasts of dynamic electricity prices that orchestrate electricity supply and demand in order to maximize the efficiency of conventional generation and the use of renewable resources including wind and solar energy. A binary control algorithm that influences the on and off states of end uses was developed and applied to empirical time series data to estimate price-based instantaneous opportunities for shedding and adding electric load. To overcome the limitations of traditional stochastic methods in quantifying erse, non-Gaussian, non-stationary distributions of observed appliance behaviour, recent developments in wavelet-based analysis were applied to capture and simulate time-frequency domain behaviour. The performance of autoregressive and spectral reconstruction methods was compared, with phase reconstruction providing the best simulation ensembles. Results show spatiotemporal differences in the amount of load that can be shed and added, which suggest further investigation is warranted in estimating the benefits anticipated from the wide-scale deployment of continuous automatic residential load shaping. Empirical data and documented software code are included to assist in reproducing and extending this work.
Publisher: Wiley
Date: 24-10-2023
DOI: 10.1111/CCH.13186
Publisher: Wiley
Date: 18-08-2022
DOI: 10.1111/CCH.13040
Abstract: Transition to adult care for adolescents with an intellectual disability and/or autism spectrum disorder with coexisting mental health disorders, often termed ‘dual disability’, is complex. It requires a family‐centred approach, with collaboration among health, disability and social services and early planning. To describe carer perspectives of transition to adult care and the outcomes of a transition support intervention, Fearless, Tearless Transition , for adolescents with dual disabilities piloted at a tertiary children's hospital. Carers of adolescents with a dual disability were invited to complete a survey at the commencement of their participation in the Fearless, Tearless Transition model, and again at the conclusion of the project. Within this intervention, carers and adolescents were encouraged to attend dedicated transition clinics and participate in a shared care general practitioner (GP) and paediatrician process. One hundred and fifty‐one carers of adolescents with dual disabilities were included in Fearless, Tearless Transition . Of this cohort, 138 adolescents and their carers received support in a dedicated transition clinic with 99 carers completing the initial survey at the commencement of the model. Eighty‐two per cent of carers reported moderate to high levels of anxiety about transitioning from paediatric to adult care with 39% feeling ‘unprepared’ about transition. Eighty‐one per cent reported having inadequate access to respite care with 47% reporting a lack of access to services in the community and 56% expressing dissatisfaction with their GPs. One hundred and two families participated in the shared care process with 80 GPs and 33 paediatricians. Twenty‐two carers completed the second survey reporting a modest but significant improvement in preparedness for transition to adult care. This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early, centralized transition planning, consistent methods of assessing adolescent and carer needs and shared care.
Publisher: SAGE Publications
Date: 30-05-2023
DOI: 10.1177/00048674231166329
Abstract: The objective of this article was to provide an overview of the development and recommendations from the Australian evidence-based clinical practice guideline for attention deficit hyperactivity disorder (ADHD). The guideline aims to promote accurate and timely identification and diagnosis, and optimal and consistent treatment of ADHD. Development integrated the best available evidence with multidisciplinary clinical expertise and the preferences of those with lived experience, underpinned by the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) framework. The 23 guideline development group members included psychiatrists, paediatricians, general practitioners, psychologists, speech pathologists, occupational therapists, educators, Indigenous psychologists, and people with a lived experience with two independent chairs and a methodologist. Where appropriate, evidence reviews from the National Institute for Health and Care Excellence (NICE) 2018 ‘Attention Deficit Hyperactivity Disorder: Diagnosis and Management’ guideline were updated. Fifty prioritised clinical questions were addressed in 14 systematic reviews (new and updated from NICE 2018) and 28 narrative reviews. The 113 clinical recommendations apply to young children (5 years and under), children, adolescents and adults. They provide guidance for clinicians on identification, screening, diagnosis, multimodal treatment and support, including pharmacological and non-pharmacological interventions. The guideline and supporting information are available online: adhdguideline.aadpa.com.au/ The guideline was approved by the National Health and Medical Research Council (NHMRC) of Australia and relevant medical and allied health professional associations. It is anticipated that successful implementation and uptake of the guideline by organisations, health care providers and other professionals will increase delivery of evidence-based treatment and improve health outcomes for the more than 800,000 Australians with ADHD.
Publisher: BMJ
Date: 02-2023
DOI: 10.1136/BMJPO-2022-001605
Abstract: To investigate disease control, psychiatric comorbidity, substance use and their possible associations in adolescents with chronic medical conditions before transfer to adult healthcare. We collected clinical data from the year preceding transfer of care and psychiatric data from the records of the paediatric hospital in Helsinki, Finland (population base 1.7 million). Participants were grouped into three disease and/or adherence control categories (good, some evidence of concern, poor) based on clinical data from the medical records of the year preceding the transfer of care. Participants completed the Adolescent’s Substance Use Measurement Questionnaire before transfer of care and were ided into four risk subgroups accordingly. In total, 253 adolescents (mean age 17.3 years, SD 1.2) from six paediatric subspecialties participated in this study. Disease control and/or adherence were rated as good in 28% (n=70), moderate in 42% (n=105) and poor in 30% (n=76) in the year before participants transferred to adult health services. A quarter of participants had at least one psychiatric diagnosis during adolescence. Adolescents with concomitant psychiatric diagnoses more often had poor disease control of their chronic medical condition than adolescents with only a medical condition (44% vs 26% n=25 of 59 vs 51 of 194, respectively). More than half of adolescents (56%) were abstinent or used substances infrequently 10% (n=26) reported hazardous substance use. Psychiatric comorbidity in adolescents with chronic medical conditions is common. Its negative association with disease control and possible substance use should be considered in the transition process to adult health services.
Location: United States of America
No related grants have been discovered for Evelyn Culnane.