Lydia Makaroff

The Australian National University, Biochemistry and Molecular Biology, Alumna

KU Leuven, Microbiology & Immunology, Associate Researcher

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I am CEO specialising in public policy and people management, with global experience in Australia, the UK, the USA, and Europe. I am currently responsible for the day-to-day operations of a busy charity, managing diverse teams, producing policy papers, designing multi-year strategies, fundraising, launching major projects, presenting at international congresses, and writing articles for journals and magazines. I am skilled in business development, and have worked with partners in industry, academia, international institutions, and non-government organisations. I have broad knowledge of the economics, epidemiology, and public health impact of non-communicable diseases. I'm fascinated by relationship management and enjoy meeting like-minded people. Feel free to contact me directly if you share my interests.

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Solutions for supporting deprived populations of patients and carers

Association Between Non-Motor Symptoms and Health Care Utilization Among Patients with Parkinson’s Disease in the United States

Value in Health, 2013

ment was associated with 38% fewer unplanned admissions (981 vs. 604, X 1 2 = 89.2, p< 0.001) and... more ment was associated with 38% fewer unplanned admissions (981 vs. 604, X 1 2 = 89.2, p< 0.001) and 58% fewer unplanned bed nights (8,817 vs. 3,681, X 1 2 = 2109.8, p< 0.001) in the year following treatment initiation compared with the year before. A 14% reduction in all outpatient appointments was also observed, due principally to a 25% reduction in neurological outpatient appointments (from 7,826 to 5,901, X 1 2 = 269.7, p< 0.001). Evidence from this study indicates that duration of treatment is a significant factor in this response; patients receiving between 12 and 14 doses (n= 1,122) experienced 70% reduction in unplanned admissions and 90% reduction in unplanned bed nights. CONCLUSIONS: Our data support the notion that natalizumab treatment significantly reduces unplanned hospital treatment and outpatient attendance.

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Disease burden in patients with restless legs syndrome compared with an apnea and a control cohort

Sleep Medicine, 2013

Results: There were 11 men and 7 women in both groups. Mean age in PLMD groups was 50.00 an in co... more Results: There were 11 men and 7 women in both groups. Mean age in PLMD groups was 50.00 an in control group it was 49.89 years (p = 0,492). PLMD patients had significantly higher BMI (27,69 vs. 23,84; p = 0,0047). There was no difference between the groups in values in mean systolic blood pressure during the night (123,5 mmHg vs 121.66 mmHg, p = 0,369) and during sleep (122,0 vs.121,11, p = 0,433). No difference was found in mean values of diastolic blood pressure during the night (77.66 vs. 75.15, p = 0,242) and during the sleep (77.16 vs. 74.61, p = 0,239). Conclusion: We have found that periodic limb movement disorder does not imfluence significantly values of nocturnal blood pressure compared with another sleep disorders.

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Disparities in Access to Novel Systemic Therapies in Patients With Urinary Tract Cancer: Propagating Access, Policies and Resources Uniformly

Clinical Genitourinary Cancer

Diabetes in Europe – how big is the problem?

European Journal of Public Health, 2014

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IDF Diabetes Atlas: Global estimates for the prevalence of diabetes for 2015 and 2040

Diabetes Research and Clinical Practice, 2017

To produce current estimates of the national, regional and global impact of diabetes for 2015 and... more To produce current estimates of the national, regional and global impact of diabetes for 2015 and 2040. Methods: A systematic literature review was conducted to identify data sources on the prevalence of diabetes from studies conducted in the period from 1990 to 2015. An analytic hierarchy process was used to select the most appropriate studies for each country, and estimates for countries without data were modelled using extrapolation from similar countries that had available data. A logistic regression model was used to generate smoothed age-specific estimates, which were applied to UN population estimates. Results: 540 data sources were reviewed, of which 196 sources from 111 countries were selected. In 2015 it was estimated that there were 415 million (uncertainty interval: 340-536 million) people with diabetes aged 20-79 years, 5.0 million deaths attributable to diabetes, and the total global health expenditure due to diabetes was estimated at 673 billion US dollars. Three quarters (75%) of those with diabetes were living in low-and middleincome countries. The number of people with diabetes aged 20-79 years was predicted to rise to 642 million (uncertainty interval: 521-829 million) by 2040. Conclusion: Diabetes prevalence, deaths attributable to diabetes, and health expenditure due to diabetes continue to rise across the globe with important social, financial and health system implications.

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Stable and Unstable Treatment Patterns in Epilepsy and Their Direct Cost Impact: A Pharmetrics Analysis of AED Add-on Therapy, Switches, and Discontinuations

Impact of Non-Motor Symptoms on Healthcare Utilization in a US Parkinson's Disease Patient Population (P04.146)

Neurology, 2013

VP60 The Importance Of Patient Organizations Involvement In Health Technology Assessment

International Journal of Technology Assessment in Health Care, 2017

INTRODUCTION:In Europe, the work done by the European Commission and the European Network for Hea... more INTRODUCTION:In Europe, the work done by the European Commission and the European Network for Health Technology Assessment (EUnetHTA) has consolidated the role of Health Technology Assessment (HTA), and promises to better harmonize its impact across European Union (EU) countries. However, more work is needed to improve patient involvement in assessing new health technology, and in developing research priorities.METHODS:The European Cancer Patient Coalition (ECPC) developed a model for engagement of patients in HTA based on the experience from: •ECPC's ‘Value of Innovation in Oncology’ White Paper, which includes input from ECPC's membership•ECPC's leading role in the Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) study, funded by the Innovative Medicines Initiative, to develop guidelines on how patient-preference studies should be performed throughout the development of new medical treatments.RESULTS:The ECPC ‘Value of Innovation in O...

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Gastrointestinal disorders in Parkinson's disease: prevalence and health outcomes in a US claims database

Journal of Parkinson's disease, 2011

The majority of patients with Parkinson's Disease (PD) will eventually develop gastrointestin... more The majority of patients with Parkinson's Disease (PD) will eventually develop gastrointestinal disorders (GIDs) such as dysphagia, constipation and gastroesophageal reflux. The objectives of this study were to examine the incidence of GIDs in PD patients in a US population, and to examine subsequent PD-related outcomes in patients with GIDs. In a US administrative health claims database, GID incidence increased over time to reach 65% at four years after PD diagnosis. To further investigate this relationship, a subset of patients was analysed in greater detail. Continuously treated PD patients with and without GIDs were matched by age, gender, comorbidities, treatment regime, US region and plan type. Their emerging health outcomes were followed up for two years. Outcomes included neuropsychiatric, motor and urogenital disturbances, as well as healthcare utilization and costs. Patients with GIDs had higher rates of psychosexual dysfunction, anxiety, depression, ataxia, pain, move...

format_quote65% of compliant PD patients experience gastrointestinal disorders four years post-diagnosis, indicating a high burden of non-motor symptoms.format_quote

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Global perspectives on the provision of diabetic retinopathy screening and treatment: Survey of health care professionals in 41 countries

Diabetes Research and Clinical Practice, 2018

Conclusion Health care professionals need to be appropriately supported and trained so they can p... more

format_quoteSeventy-three percent of health care professionals routinely screened patients for diabetic retinopathy, largely conducted by ophthalmologists using various imaging techniques.format_quote

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sj-pdf-1-inq-10.1177_00469580211030217 – Supplemental material for Designing a Pragmatic Intervention to Help Improve the Bladder Cancer Patient Experience

Supplemental material, sj-pdf-1-inq-10.1177_00469580211030217 for Designing a Pragmatic Intervent... more Supplemental material, sj-pdf-1-inq-10.1177_00469580211030217 for Designing a Pragmatic Intervention to Help Improve the Bladder Cancer Patient Experience by Agustina Bessa, Cecilia Bosco, Fidelma Cahill, Beth Russell, Louis Fox, Charlotte Moss, Harriet Wylie, Anna Haire, Saran Green, Deborah Enting, Shamim Khan, Rajesh Nair, Ramesh Thurairaja, Kathryn Chatterton, Suzanne Amery, Nicola Peat, Sue Smith, Stuart Spear, Richard T Bryan, Leila Frodsham, Danny Burke, Jeannie Rigby, Lydia Makaroff, Phil Kelly, Melanie Costin, Christel Häggström and Mieke Van Hemelrijck in INQUIRY: The Journal of Health Care Organization, Provision, and Financing

format_quoteQualitative evaluation post-trial will assess participant experiences and control group contamination effects for deeper insights into intervention impact.format_quote

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Estimated health care expenditure due to diabetes in the North America and Caribbean Region

Estimated healthcare expenditures due to diabetes in the North America and Caribbean Region in 2014

PND9 Health Care Costs Stratified by Epilepsy Severity in a Us Commercially Insured Setting

Value in Health, 2010

To evaluate the effects on direct and indirect costs of initiating pregabalin or duloxetine in em... more To evaluate the effects on direct and indirect costs of initiating pregabalin or duloxetine in employees diagnosed with painful diabetic peripheral neuropathy (pDPN). METHODS: Employees (18-64 years old) with a diagnosis of DPN and at least one claim for a pDPN-related pain medication were identified using the Thomson Reuters MarketScan® Commercial Claims and Encounters Research Database (2005-2008). Patients were continuously enrolled in the 6-month pre-and 6-month post-initiation periods. To control for selection bias, propensity scored matched pregabalin and duloxetine new starts were evaluated. Key study outcomes including imputed medically-related work loss, prescription and health care utilization, and associated expenditures were analyzed using bivariate statistics and multivariate models in a difference-indifference approach. RESULTS: A total of 946 employees with pDPN (473 per group) were identified. In the pre-index period, there were no statistically significant differences between groups in age (mean 54.0 ± 5.6 pregabalin and 53.3 ± 7.5 duloxetine), gender (females 52% pregabalin, 48% duloxetine), geographic distribution, insurance plan types, comorbidities, medication use, health care resource utilization or health care expenditures. The average number of prescriptions in the 6-month post-index period was 2.9 ± 1.9 for pregabalin and 3.1 ± 2.1 for duloxetine. There were no significant differences between treatment groups for pre-to-post changes in opioid utilization (marginal effect 1.3 percentage points fewer pregabalin opioid patients, p = 0.328) as well as the number of pDPN-related pain medications (marginal effect 0.108 more medications for pregabalin, p = 0.506). The adjusted marginal effects for pre-to-post changes in all-cause health care expenditures ($154 greater increase for pregabalin patients, p = 0.895), pDPN-attributable expenditures ($145 greater increase for pregabalin patients, p = 0.359) and indirect costs ($458 relative decrease for pregabalin patients, p = 0.324) were not statistically significant. CONCLUSIONS: There were no significant pre-to-post differences between pregabalin and duloxetine treatment groups in opioid use, DPN-related pain medication use, pDPN-attributable, all-cause and indirect expenditures.

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Foxp 3 regulatory T cells exert asymmetric control over murine helper responses by inducing Th 2 cell apoptosis

1VIB, Leuven, Belgium; 2Department of Experimental Medicine, University of Leuven, Leuven, Belgiu... more 1VIB, Leuven, Belgium; 2Department of Experimental Medicine, University of Leuven, Leuven, Belgium; 3Immunology Program, John Curtin School of Medical Research, Australian National University, Canberra, Australia; 4Business and Decision Life Sciences, Brussels, Belgium; 5Medical School, Australian National University, Canberra, Australia; 6Department of Immunology, The Canberra Hospital, Canberra, Australia; and 7Australian Phenomics Facility, Australian National University, Canberra, Australia

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Global Estimates of Hyperglycaemia in Pregnancy: Determinants and Trends

Diabetes is a large and increasing global public health concern. Hyperglycaemia in pregnancy (HIP... more Diabetes is a large and increasing global public health concern. Hyperglycaemia in pregnancy (HIP) is an important component and contributor to the diabetes epidemic. Quantifying the burden of HIP is challenging due to shifting definitions. However, early identification is key to preventing adverse outcomes for mother and child. HIP shares many risk factors with type 2 diabetes including increasing age, poor diet, and low physical activity. Shifts in demographic patterns towards older age and fertility combined with shifts in epidemiological patterns towards non-communicable disease will continue to drive increases in the HIP burden. In 2015 more than 20 million live births were affected by HIP. Resources should be dedicated to harmonising a definition for HIP around the world, early management and detection, and follow-up post-partum to ensure the health of women and infants affected by HIP.

Asymmetric immune regulation by regulatory T cells

The essential role for condensin II in T cell development

Designing a Pragmatic Intervention to Help Improve the Bladder Cancer Patient Experience

Bladder cancer (BC) is the 10th most common malignancy worldwide and the patient experience is fo... more Bladder cancer (BC) is the 10th most common malignancy worldwide and the patient experience is found to be worse than that for patients diagnosed with other cancer types. We aimed to develop a wellbeing intervention to help improve the bladder cancer patient experience by ameliorating their health-related Quality of Life (HRQoL). We followed the 3 phases of the modified Medical Research Council (MRC) Framework for development of complex interventions. Following a systematic review of the literature on mental, sexual, and physical wellbeing, we conducted discussion groups with patients and healthcare professionals on these 3 themes. A consultation phase was then conducted with all relevant stakeholders to co-design a wellbeing intervention as part of a feasibility study. A pragmatic wellbeing feasibility trial was designed based on the hypothesis that a wellbeing program will increase patient awareness and attendance to services available to them and will better support their needs t...

Lydia Makaroff

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