Article
Obstetrics & Gynecology
Rita F. Padoan, Serena Quattrucci, Annalisa Amato, Marco Salvatore, Donatello Salvatore, Giuseppe Campagna
Summary: The study found that preconceptional respiratory function of women with cystic fibrosis (CF) is associated with the duration of pregnancy and birthweight of newborns, and cesarean deliveries are common among young CF women with normal respiratory function.
ACTA OBSTETRICIA ET GYNECOLOGICA SCANDINAVICA
(2021)
Article
Medicine, General & Internal
Rita Padoan, Serena Quattrucci, Annalisa Amato, Vincenzo Carnovale, Donatello Salvatore, Marco Salvatore, Giuseppe Campagna
Summary: This study examined a subgroup of Italian CF patients diagnosed late, with a median age of 36.2 years at diagnosis. Among male patients, 45.9% were diagnosed due to infertility, and there was a low prevalence of pancreatic insufficiency and Pseudomonas aeruginosa infection in late diagnosis patients, suggesting a mild CF phenotype in the majority of cases.
Article
Respiratory System
Emily Granger, Gwyneth Davies, Ruth H. Keogh
Summary: This study investigates whether adding hypertonic saline to patients with cystic fibrosis who are already using dornase alfa has additional benefits for lung function or use of intravenous antibiotics. The findings indicate that adding hypertonic saline does not significantly improve lung function or decrease the use of intravenous antibiotics in cystic fibrosis patients.
Article
Pediatrics
Susannah Ahern, Joanne Dean, John Liman, Rasa Ruseckaite, Nettie Burke, Morgan Gollan, Lucy Keatley, Susannah King, Tom Kotsimbos, Peter G. Middleton, Andre Schultz, Claire Wainwright, Peter Wark, Scott Bell
Summary: Clinical registries for cystic fibrosis patients have existed internationally for decades, evolving to support clinical research, trials, and international data comparisons. The Australian Cystic Fibrosis Data Registry underwent a significant transformation in 2018-19, including a comprehensive review and reconstruction of its database to meet the needs of multiple stakeholders. This intensive process required expert engagement to develop a database fit for purpose in providing best practice care for CF patients in Australia.
PAEDIATRIC RESPIRATORY REVIEWS
(2021)
Article
Respiratory System
Adele Coriati, Xiayi Ma, Jenna Sykes, Sanja Stanojevic, Rasa Ruseckaite, Lydie Lemonnier, Clemence Dehillotte, Jan Tate, Catherine Ann Byrnes, Scott C. Bell, Pierre Regis Burgel, Anne L. Stephenson
Summary: This study compared the survival rates of cystic fibrosis patients in countries with single-payer healthcare systems, taking into account markers of disease severity. The results showed that France had significantly higher survival rates compared to other countries, despite having a higher proportion of underweight patients.
Article
Respiratory System
Irushi Ratnayake, Susannah Ahern, Rasa Ruseckaite
Summary: Participants in this study generally supported the usefulness and practicality of PROM implementation in the ACFDR. They believed that PROMs could provide valuable aggregate health-related quality of life data and emphasized the importance of feedback mechanisms for patients and clinicians. Most participants preferred electronic PROM administration for easy integration and support for feedback.
BMJ OPEN RESPIRATORY RESEARCH
(2021)
Article
Respiratory System
Daniela K. Schluter, Josh S. Ostrenga, Siobhan B. Carr, Aliza K. Fink, Albert Faro, Rhonda D. Szczesniak, Ruth H. Keogh, Susan C. Charman, Bruce C. Marshall, Christopher H. Goss, David Taylor-Robinson
Summary: A previous analysis found that US pediatric CF patients had higher lung function compared to the UK, a difference that remained throughout childhood. There were no significant differences in early growth, nutrition, or infections, but differences in early treatments were observed.
Article
Respiratory System
Claudia Grehn, A-M Dittrich, J. Wosniok, F. Holz, S. Hafkemeyer, L. Naehrlich, C. Schwarz
Summary: The study revealed that cystic fibrosis arthropathy (CFA) is common in CF patients, especially in adults, and is significantly associated with factors such as age, gender, hospitalizations, chronic Pseudomonas aeruginosa infection, CF-related diabetes, pancreatic insufficiency, sinusitis/polyps, and antimycotic treatment.
JOURNAL OF CYSTIC FIBROSIS
(2021)
Article
Respiratory System
Sylvia Szentpetery, Gabriela S. Fernandez, Michael S. Schechter, Raksha Jain, Patrick A. Flume, Aliza K. Fink
Summary: Historically, there has been a strong emphasis on improving weight and nutritional status in cystic fibrosis patients. Recent trends show a significant increase in overweight and obesity, with specific factors such as age, income, and gene mutations influencing obesity prevalence. Conversely, underweight status has decreased.
JOURNAL OF CYSTIC FIBROSIS
(2022)
Article
Economics
Ingrid A. Cox, Barbara de Graaff, Hasnat Ahmed, Julie Campbell, Petr Otahal, Tamera J. Corte, Yuben Moodley, Nicole Goh, Peter Hopkins, Sacha Macansh, E. Haydn Walters, Andrew J. Palmer
Summary: This study quantified the economic burden of idiopathic pulmonary fibrosis (IPF) in Australia, finding that the main cost drivers were antifibrotic medication, hospital admissions, and medications for comorbidities.
EUROPEAN JOURNAL OF HEALTH ECONOMICS
(2023)
Article
Immunology
Conan Y. Zhao, Yiqi Hao, Yifei Wang, John J. Varga, Arlene A. Stecenko, Joanna B. Goldberg, Sam P. Brown
Summary: The study found that models trained on whole-microbiome quantitation outperformed models trained only on pathogen quantitation in lung infections in people with cystic fibrosis. The most accurate models retained key pathogens and nonpathogen taxa as important predictors of lung health.
JOURNAL OF INFECTIOUS DISEASES
(2021)
Article
Pediatrics
Donatello Salvatore, Vincenzo Carnovale, Fabio Majo, Rita Padoan, Serena Quattrucci, Marco Salvatore, Domenica Taruscio, Annalisa Amato, Gianluca Ferrari, Giuseppe Campagna
Summary: This study evaluated the disease characteristics of adult and pediatric patients with cystic fibrosis who have a minimal function mutation in Italy. The findings show that patients with an MF/no-F genotype generally exhibit a milder phenotype, including later diagnosis, lower sweat chloride levels, better nutrition, and lung function.
PEDIATRIC PULMONOLOGY
(2021)
Article
Respiratory System
Edmund H. Sears, Alexandra C. Hinton, Sara Lopez-Pintado, Christine W. Lary, Jonathan B. Zuckerman
Summary: The study found that prolonged periods of missed care in cystic fibrosis patients were associated with decreased lung function, especially in adolescents and young adults.
ANNALS OF THE AMERICAN THORACIC SOCIETY
(2023)
Article
Multidisciplinary Sciences
Sameer Desai, Wei Zhang, Jason M. Sutherland, Joel Singer, Bradley S. Quon
Summary: Cystic fibrosis (CF) is a progressive multi-organ disease that places extensive demands on the healthcare system. This study found that individuals with severe lung impairment, lung transplantation, liver cirrhosis with portal hypertension, and female sex were more likely to become frequent high-cost CF users. These high-cost users accounted for more than one-third of the overall healthcare costs, primarily due to inpatient hospitalization and outpatient medication costs.
SCIENTIFIC REPORTS
(2023)
Article
Pediatrics
Pelin Asfuroglu, Tugba Sismanlar Eyuboglu, Ayse Tana Aslan, Tugba Ramasli Gursoy, Nagehan Emiralioglu, Ebru Yalcin, Nural Kiper, Velat Sen, Hadice Selimoglu Sen, Derya Ufuk Altintas, Dilek Ozcan, Ayse Ayzit Kilinc, Haluk Cokugras, Azer Kilic Baskan, Hakan Yazan, Ufuk Erenberk, Guzide Dogan, Gokcen Unal, Asli Imran Yilmaz, Ozlem Keskin, Elif Arik, Ercan Kucukosmanoglu, Ilim Irmak, Ebru Damadoglu, Gokcen Kartal Ozturk, Figen Gulen, Abdurrahman Erdem Basaran, Aysen Bingol, Sukru Cekic, Nihat Sapan, Gonca Kilic, Koray Harmanci, Mehmet Kose, Ali Ozdemir, Gokcen Dilsa Tugcu, Sanem Eryilmaz Polat, Melih Hangul, Gizem Ozcan, Zeynep Gokce Gayretli Aydin, Hasan Yuksel, Erdem Topal, Sebnem Ozdogan, Gonul Caltepe, Ayse Suleyman, Demet Can, Pervin Korkmaz Ekren, Cem Murat Bal, Mehmet Kilic, Guzin Cinel, Nazan Cobanoglu, Sevgi Pekcan, Erkan Cakir, Ugur Ozcelik, Deniz Dogru
Summary: This study evaluated the impact of a newly established CF registry system in Turkey on the follow-up and care of CF patients. The results showed that the registry system led to higher z-scores of height and BMI, increased usage of medications for lung function improvement, and lower incidence of PBS. This suggests that the registry system has positively influenced the care of CF patients.
PEDIATRIC PULMONOLOGY
(2022)
Article
Health Care Sciences & Services
Rebecca Mercieca-Bebber, Rachel Campbell, Dayna Jan Fullerton, Sabina Kleitman, Daniel S. J. Costa, Dion Candelaria, Margaret Ann Tait, Richard Norman, Madeleine King
Summary: This study compared the health-related quality of life of the Australian general population during the COVID-19 pandemic with pre-pandemic data and identified factors associated with poorer HRQL. The results showed that Australians reported poorer HRQL during the pandemic, with younger age and negative pandemic-related impacts being risk factors for poor HRQL.
QUALITY OF LIFE RESEARCH
(2023)
Article
Health Care Sciences & Services
Hoa Vu, Richard Norman, Ngoc M. Pham, Hoai T. T. Nguyen, Hung M. Pham, Quang N. Nguyen, Loi D. Do, Christopher M. Reid
Summary: This study provides the first insight into sex differences in HRQoL following PCI in Vietnam. The results show that women have worse quality of life at 30 days after discharge, especially in mobility, personal care, and pain/discomfort. However, at 12 months, women show better recovery in mobility compared to men.
QUALITY OF LIFE RESEARCH
(2023)
Article
Economics
Richard Norman, Brendan Mulhern, Emily Lancsar, Paula Lorgelly, Julie Ratcliffe, Deborah Street, Rosalie Viney
Summary: This paper reports on a study that developed an EQ-5D-5L value set for Australia using a discrete choice experiment (DCE) that included both duration and death as attributes. The study used a large Australian panel of internet respondents and generated an Australian adult utility model for use in cost-utility analysis through a DCE with 500 choice triplets.
Article
Health Care Sciences & Services
Sanjeewa Kularatna, Gang Chen, Richard Norman, Clara Mukuria, Donna Rowen, Sameera Senanayake, Ruvini Hettiarachchi, Brendan Mulhern, Katie Fozzard, William Parsonage, Steven M. MacPhail
Summary: A population utility value set for the MacNew-7D heart disease-specific instrument was developed using discrete choice experiments. The study found that this value set is likely suitable for estimating quality-adjusted life years derived from the MacNew heart disease health-related quality-of-life questionnaire.
QUALITY OF LIFE RESEARCH
(2023)
Article
Economics
Chunzhou Mu, Jane Hall
Summary: The proportion of single person households is increasing with population ageing. This study examines the relationship between marital status and hospitalisations, finding that singles have an increased probability of hospitalisation and longer length of stay. The association between marital status and hospitalisations varies by different types of care, indicating a need for targeted strategies to reduce hospitalisation in this group.
AUSTRALIAN ECONOMIC PAPERS
(2023)
Article
Health Care Sciences & Services
Kees van Gool, Jane Hall, Philip Haywood, Dan Liu, Serena Yu, Samuel B. G. Webster, Bahare Moradi, Sanchia Aranda
Summary: This study examines the recent trends in funding for radiotherapy services from 2009-10 to 2021-22 and provides policy implications. The research reveals a 78% increase in demand for radiotherapy services while funding has increased by 137%. Despite the main driver of funding growth being the Extended Medicare Safety Net, patients are facing increasing financial barriers. Therefore, there is a need to review policies on funding radiotherapy services to ensure easy and affordable access for all patients in need of treatment, while maintaining reasonable costs for the government.
AUSTRALIAN HEALTH REVIEW
(2023)
Article
Health Care Sciences & Services
Ruixuan Jiang, Eleanor Pullenayegum, James W. Shaw, Axel Muhlbacher, Todd A. Lee, Surrey Walton, Thomas Kohlmann, Richard Norman, A. Simon Pickard
Summary: This study compared supervised face-to-face discrete choice experiments (DCE) with unsupervised online facsimile in terms of face validity, respondent behavior, and modeled preferences. The results showed that online respondents reported more problems on EQ-5D dimensions except Mobility and had a greater prevalence of suspicious DCE choice patterns. Additionally, the modeled preferences differed between modes of administration, with online respondents weighing Mobility more importantly and Anxiety/Depression less importantly.
MEDICAL DECISION MAKING
(2023)
Article
Medicine, General & Internal
Dan Liu, Serena Yu, Samuel B. G. Webster, Bahare Moradi, Philip Haywood, Jane Hall, Sanchia Aranda, Kees van Gool
Summary: This study aimed to analyze patients' out-of-pocket costs for radiation oncology services and their variation by geographic location. The results showed that there was a significant variation in out-of-pocket costs for radiation therapy among different areas, with some patients facing high costs, and this situation changed over time.
MEDICAL JOURNAL OF AUSTRALIA
(2023)
Article
Health Care Sciences & Services
Elizabeth Thomas, Crystal Man Ying Lee, Richard Norman, Leanne Wells, Tim Shaw, Julia Nesbitt, Isobel Frean, Luke Baxby, Sabine Bennett, Suzanne Robinson
Summary: This study investigated the experience of Australian people who engaged in telehealth consultations during the COVID-19 pandemic and the demographic factors influencing their engagement. The results showed that 88.3% of the participants had engaged in some type of healthcare consultation in the previous 12 months, and 69.3% of those had used telehealth. Older people were more likely to have a healthcare consultation but less likely to have a telehealth consultation. Participants with a bachelor's degree or above were more likely to use telehealth and have a positive experience.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2023)
Article
Economics
Patricia Kenny, Dan Liu, Denzil Fiebig, Jane Hall, Jared Millican, Sanchia Aranda, Kees van Gool, Philip Haywood
Summary: The costs of care in the last year of life are substantially higher, and the use of specialist palliative care (SPC) services can have complex effects on costs. Early initiation of SPC is associated with higher costs over the last year of life but lower costs in the last 1 to 3 months. This is true for both cancer and non-cancer patients.
PHARMACOECONOMICS-OPEN
(2023)
Article
Public, Environmental & Occupational Health
Juliana de Oliveira Costa, Sallie-Anne Pearson, David Brieger, Sanja Lujic, Md Shajedur Rahman Shawon, Louisa R. Jorm, Kees van Gool, Michael O. Falster
Summary: Private health insurance patients undergoing PCI treatment in Australian public hospitals have lower in-hospital mortality rates compared to publicly insured patients. However, complications or length of stay do not show significant differences between private and public patients.
INTERNATIONAL JOURNAL FOR EQUITY IN HEALTH
(2023)
Article
Health Care Sciences & Services
Samuel B. G. Webster, Sarah E. E. Neville, Jennifer Nobbs, Jada Ching, Kees van Gool
Summary: In order to improve the quality of care, many countries have introduced rewards and penalties into the funding and pricing of hospital services. This paper focuses on recent advancements in Australia, where financial penalties for hospital acquired complications (HACs) and avoidable hospital readmissions (AHRs) have been incorporated into the funding of public hospital services. The paper discusses the development of measures to identify episodes, the design of analytical approach for risk adjustment, and the calculation of funding implications including dampening effects to account for risk levels. It also reports on the risk adjustment analysis, costs of HACs and AHRs, and implementation strategies undertaken by the Independent Health and Aged Care Pricing Authority (IHACPA) to ensure transparency and stakeholder engagement.
HEALTH SERVICES INSIGHTS
(2023)
Article
Economics
Madeleine T. King, D. A. Revicki, R. Norman, F. Mueller, R. C. Viney, A. S. Pickard, D. Cella, J. W. Shaw
Summary: This study aims to develop a value set that reflects the preferences of the US general population for health states described by the FACT-8D, a multi-attribute utility instrument derived from the FACT-General questionnaire. A discrete choice experiment was conducted to value these health states using a representative sample of the US general population.
PHARMACOECONOMICS-OPEN
(2023)