Recent Publications
TOPICS: Disability and Chronic Disease | The First 1000 Days | Infection and Immunity | Nutrition
Topic - Disability and Chronic Disease
Embracing the Challenge of Adolescent Health in Kenya
Njeri Karianjahi; Joyce Mbogo; Christine Wambugu; John Tole; Ambrose Agweyu
In sub-Saharan Africa, adolescents are growing up in challenging social contexts and carry a much heavier burden of disease than their peers in high-income settings. Poverty, early school leaving, child marriage and pregnancy, low health literacy, poor health-seeking behaviour, the long-term effects of childhood malnutrition that persist into adolescence, and a relatively high burden of infectious diseases are key determinants of poor adolescent health status in this region.
The HIV epidemic has resulted in a major reorganisation of family roles and responsibilities, disrupting the lives of many adolescents who are also inherently vulnerable to HIV infection because of the developmental changes and characteristic risk-taking behaviour that occurs in this period of life.
More information is available here: <https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(19)30374-8/fulltext>
Epidemiology of cerebral palsy in Sumba Island, Indonesia
Israt Jahan; Mahmudul Hassan Al Imam; Tasneem Karim; Mohammad Muhit; Denny Hardianto; Manik Chandra Das; Hayley Smithers‐Sheedy; Nadia Badawi; Gulam Khandaker
A community‐based key informant method survey among children (aged <18years) with cerebral palsy (CP) was conducted between March and August 2017. Children with suspected CP underwent detailed neurodevelopmental assessment by a multidisciplinary medical team. Socio‐demographic characteristics, aetiology, motor type, motor severity, associated impairments, educational, and rehabilitation status were documented.
Aim: To define the epidemiology, clinical characteristics, and rehabilitation status of children with cerebral palsy (CP) in Sumba Island, Indonesia.
More is available here: https://onlinelibrary.wiley.com/doi/abs/10.1111/dmcn.14616
What predicts the proxy-reported health-related quality of life of adolescents with cerebral palsy in Bangladesh?
The health-relation quality of life (HRQoL) of The health-related quality of life (HRQoL) of adolescents with cerebral palsy (CP) in low and middle-income countries is often poor, as is the case in Bangladesh. This exploratory study examined what factors predict the proxy-reported HRQoL of adolescents with CP in rural Bangladesh, a typical low- and middle-income country (LMIC).
One hundred fifty-four adolescents with CP (mean age 15y 1mo, SD 1y 8mo, female 31.2%) participated in this study.
Many of the factors predicting the proxy reported HRQoL of adolescents with CP are amenable to intervention and have the potential to improve adolescent wellbeing. Several determinants are priorities of the sustainable development goals (SDGs); these findings should inform resource prioritization to improve the wellbeing of adolescents with CP in Bangladesh and other LMICs.
More is available here: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-8130-1
Protocol for the Sri Lankan Cerebral Palsy Register pilot study
Thilini Madushika Heiyanthuduwage, Samanmali P Sumanasena, Gopi Kitnasamy, Hayley Smithers Sheedy, Gulam Khandaker, Romaniya Fernando, Saraji Wijesekara, Jayatri Jagoda, Pyara Ratnayake, Jithangi Wanigasinghe, Sarah Mclntyre, Shona Goldsmith, Emma Waight, Nadia Badawi, Mohammad Muhit, Nimisha Muttiah
Our overarching aim is to develop a platform for a national cerebral palsy (CP) register in Sri Lanka to facilitate research on the prevalence, aetiology, risk factors, motor type and severity and associated impairments of children with CP in Sri Lanka. Importantly register data will be used to understand the clinical profile of CP in Sri Lanka to inform rehabilitation service planning. This is a collaborative project between the University of Kelaniya (UKel) and the Cerebral Palsy Lanka Foundation (CPLF) from Sri Lanka and the Cerebral Palsy Alliance in Australia
More is available here: https://bmjopen.bmj.com/content/10/8/e039353
Congenital anomalies in children with cerebral palsy in rural Bangladesh
Ellen Manlongat; Sarah Mcintyre; Hayley Smithers‐Sheedy; Amit Trivedi; Mohammad Muhit; Nadia Badawi; Gulam Khandaker
AIM: To determine the proportion of children with cerebral palsy (CP) who had major congenital anomalies, describe the types of disorders, and report on the children’s functional outcomes.
Between January 2015 and December 2016, 726 children with CP were newly registered with the BCPR (277 females, 449 males; mean age [SD] at registration 90mo [54mo], 4mo–18y). Seventy‐eight children (11%) had a major congenital anomaly. Neurological (86%) and musculoskeletal congenital anomalies (10%) were the most common.
The proportion of children with major congenital anomalies in the BCPR (11%) was lower than that identified in higher‐income countries. This may be because of differences in how congenital anomalies are diagnosed as well as the impact of survival bias. In Bangladesh, children with CP and major congenital anomalies are more likely to have severe functional motor limitations and associated comorbidities.
More is available here: https://onlinelibrary.wiley.com/doi/abs/10.1111/dmcn.14456?af=R
'Flower of the body': menstrual experiences and needs of young adolescent women with cerebral palsy in Bangladesh, and their mothers providing menstrual support
R. Power , K. Wiley, M. Muhit, E. Heanoy, T. Karim, N. Badawi & G. Khandaker
This study offers voice to young adolescent women with cerebral palsy (CP) in Bangladesh as they describe their menstrual experiences and needs, and their mothers providing menstrual support.
The findings of the present study provide motivation for disability services in Bangladesh to account for the menstrual needs of young adolescent women with CP within service delivery through strategies such as providing menstrual education and by embedding value in constructs such as ‘interdependence’. Moreover, interventions focused on alleviating menstrual pain among young adolescent women with CP as well as those targeted to alleviate distress among mothers providing menstrual care are required. Finally, policy responses are required to ensure that ‘inclusive development’ considers the needs of menstruating women with disability.
More is available here: https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-020-01032-3
Improving Pacific Adolescents’ Physical Activity
A/Prof Corinne Caillaud from the School of Health Sciences and Charles Perkins Centre was funded by the Fonds Pacifique (Embassy of France in Australia) to “Develop Digital tools to assess diet and physical activity in children in the Pacific Region”. A/Prof Caillaud was concerned that less than 50% of children and adolescents in the Pacific region meet the international recommendations of 11,000 steps and 60 min of moderate-to-vigorous physical activity per day. She has highlighted findings to date in a publication with her colleagues from the University of New Caledonia, in Noumea. Technology-supported educational programs that include self-monitored physical activity via activity trackers can be successfully delivered to adolescents in schools in remote Pacific areas.
More is available here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6931053/
Cerebral Palsy in Bangladesh
A/Prof Gulam Khandaker has received funding from the Cerebral Palsy Alliance Research Foundation to assess the health-related quality of life (HRQoL) and mental health of adolescents with cerebral palsy (CP) in rural Bangladesh. A/Prof Khandaker supervises PhD student Tasneem Karim who undertook fieldwork in Bangladesh with colleagues at the
Asian Institute of Disability and Development (AIDD), at the University of South Asia, Dhaka, Bangladesh. Together, with colleagues from CSF Global, they published an open-access article which represents our first understanding of the health-related quality of life (HRQoL) mental health of adolescents with cerebral palsy (CP) from rural Bangladesh and provides guidance on priority areas for resource allocation and intervention. Their findings identified areas of concern for adolescents with CP regarding HRQoL and mental health and that outcomes were significantly poorer than for age and sex-matched peers without disability.
More is available here:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0217675
Inherited Neuropathy Consortium (previously known as the North American CMT Network)
Professor Joshua Burns is part of the Inherited Neuropathies Consortium – Rare Diseases Clinical Research Network (INC-RDCRN) and recently published a study involving patients with Charcot-Marie-Tooth disease type1A (CMT1A). Charcot-Marie-Tooth is a degenerative nerve disease that usually appears in adolescence or early adulthood. It is characterised by muscle weakness, decreased muscle size, decreased sensation, hammertoes and high arches are symptoms.
The main treatments are physiotherapy and occupational therapy.
Professor Burns is collaborating with colleagues from the USA, UK, and Italy, forming the Inherited Neuropathies Consortium (INC) to perform natural history studies in the varied forms of CMT. The INC has included up to 20 sites, currently including 16 actively enrolling sites in the United States, Europe, and Australia, and has been evaluating patients since2009.
His latest publication as part of this consortium is here:
Support for caregivers of children with disabilities in Ghana
Dr Sarah Bernays led a study in Ghana that explored the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.
Four-fifths of the estimated 150 million children with disability in the world live in resource-poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, the evidence is lacking on how to provide optimal support to these families. This research illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy.
See more at: https://pubmed.ncbi.nlm.nih.gov/30259548/
What makes children with cerebral palsy vulnerable to malnutrition?
Researchers from the Cerebral Palsy Alliance Research Institute at the University of Sydney used data from the Bangladesh Cerebral Palsy Register to assess the nutritional status and underlying risk factors for malnutrition among children with cerebral palsy in rural Bangladesh.
The burden of undernutrition is high among children with cerebral palsy in rural Bangladesh which is augmented by both poverty and clinical severity. Enhancing clinical nutritional services for children with cerebral palsy should be a public health priority in Bangladesh. Disability inclusive and focused nutrition intervention programme needs to be kept as a priority in national nutrition policies and nutrition action plans especially in low- and middle-income countries. Community-based management of malnutrition has the potential to overcome this poor nutritional scenario of children with disability (i.e., cerebral palsy). The authors, from the University of South Asia in Dhaka, CSF Global in Dhaka, and the Universities of Sydney and Melbourne recommend that global leaders such as World Health Organization, national and international organizations should take this into account and conduct further research to develop nutritional guidelines for this vulnerable group of population.
See more at: https://pubmed.ncbi.nlm.nih.gov/29658318/
Cancer diagnosis and treatment for children in India
Cure rates for children with cancer in India lag behind that of high-income countries. Various disease, treatment and socio-economic related factors contribute to this gap including barriers in timely access of diagnostic and therapeutic care. This study, led by PhD student Neha Faruqui, investigated barriers to accessing care from symptom onset to beginning of treatment, from perspectives of caregivers of children with cancer in India. This qualitative study highlights and explores some of the barriers to childhood cancer care in India and shows that referral pathways are intrinsically linked to the treatment experience and there should be better recognition of the financial and emotional challenges faced by the family that occur prior to definitive diagnosis and treatment.
See more at: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7911-x
The Age of Paediatrics
Prof Susan M Sawyer, MD ; Robyn McNeil, MPH; Kate L Francis, MSc; Juliet Z Matskarofski, BA/BHSc; Prof George C Patton, MD; Prof Zulfiqar A Bhutta, PhD; Dorothy O Esangbedo, FMCPaed; Prof Jonathan D Klein, MD
The epidemiological transition towards non-communicable diseases is characterised by an upward shift in the age of disease burden across the lifecourse.
One response, within a suite of wider actions, would be to extend the upper age limit of paediatric practice to embrace adolescent health. An online survey was produced to explore the upper age limit of paediatric care, obtaining responses from 1372 paediatricians in 115 countries.
Marked variation in the upper age limit was apparent. Among high-income countries, a higher upper age limit was associated with a greater disease burden in adolescents relative to young children (<5 years). Although paediatricians reported the mean upper age limit of paediatrics had risen over the past 20 years, the mean preferred age of 18·7 (SD 2·6) years was higher than the mean current age of 17·4 (SD 2·5) years (p<0·0001).
Paediatricians reported the main reasons for the rising age overtime was their greater awareness of adolescent health and leadership by professional associations. Reports of the quality of adolescent health education within national paediatric training suggest that this education is largely inadequate. A greater focus on adolescent health is required within paediatrics to ensure that the future paediatric workforce is appropriately equipped to respond to the changing disease burden across childhood and adolescence.
More Information is available here: <https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(19)30266-4/fulltext>
Pregnancy amongst young Papua New Guineans
Prof Kirsten Black, Joint Head of Discipline of Obstetrics, Gynaecology and Neonatology in the Sydney Medical School, is continuing to collaborate on the NHMRC funded project grant APP1144424, entitled “Developing youth-centred health promotion strategies to prevent and mitigate the adverse health impacts of adolescent pregnancy in Papua New Guinea” with colleagues from UNSW, PNG Institute of Medical Research, Burnet Institute, Monash University, Murdoch Children’s’ Research Institute, University of PNG, Port Moresby General Hospital, and Susu Mamas PNG. Prof Black published a paper in Reproductive Health Matters with her colleagues, which focuses on the situation in PNG, however, the ideas are relevant to diverse low resource settings where the harmful impacts of health inequities among young people
persist and are particularly detrimental.
More is available here: https://www.tandfonline.com/doi/full/10.1080/09688080.2018.1512297
UNICEF study in Timor Leste
Dr Nick Goodwin and Professor Lyndal Trevena from the Sydney School of Public Health were awarded a UNICEF grant to “identify indirect financial barriers to accessing maternal, neonatal and child health at healthcare facilities in Timor-Leste”. Malnutrition, child mortality, poor maternal health and hygiene practises, and limited access to water and sanitation affect families across Timor-Leste.
Child wellbeing in Indonesia
The University of Sydney has committed to a partnership with UNICEF, which focuses on child survival and development. This extends to Aceh, in Indonesia, where Professor Mu Li and Professor Joel Negin have undertaken a three-year pragmatic assessment of an integrated child wellbeing intervention. This mixed-methods evaluation is focused on Aceh’s population of nearly 5 million, where there are roughly 493,000 children under 5 years. Over 2/3 of these children grow up poor, 41% are chronically malnourished; nearly half are not fully immunised and one-fifth lives in households that practice open defecation. Recruited to this project is Ms Madeleine Randell, who graduated from the Master of International Public Health (now Master of Global Health), who utilised her Bahasa language skills to provide support for data collection, interpretation and key deliverables for the project. She is now undertaking her PhD with the School of Public Health.
Can we prevent childhood allergies before birth?
Professor Ralph Nanan and the team of researchers from the University of Sydney’s Charles Perkins Centre have found women with low levels of the short-chain fatty acid acetate are at high risk of the deadly pregnancy complication pre-eclampsia. They have found that pregnant women who eat a low fibre diet may be putting their own lives at risk and their babies are more likely to develop allergies.
The research published in the journal Nature Communications has also helped to explain the rising levels of allergies among Australian children. One in 10 Aussie kids now has a food allergy.
See more at: Hu, M., Eviston, D., Hsu, P., Marino, E., Chidgey, A., Nanan, B., Wong, K., Richards, J., Yap, Y., Collier, F., Quinton, A., Joung, S., Peek, M., Benzie, R., Macia, L., Nanan, R., et al (2019). Decreased maternal serum acetate and impaired fetal thymic and regulatory T cell development in preeclampsia. Nature Communications, 10(1), 1-13. [More Information]
Antenatal care services in Nigeria
Antenatal care (ANC) is an essential intervention to improve maternal and child health. In Nigeria, no population-based studies have investigated predictors of poor receipt of components and uptake of ANC at the national level to inform targeted maternal health initiatives. Associate Professor Camille Raynes Greenow and colleagues from Ambrose Ali University and Western Sydney University found that common risk factors for underutilization and inadequate components of ANC in Nigeria included residence in rural areas, no maternal education, maternal unemployment, long distance to health facilities and less maternal exposure to the media. Other risk factors for underutilization of ANC were home births and low household wealth. The study suggests that underutilization and inadequate receipt of the components of ANC were associated with amenable factors in Nigeria. Subsidized maternal services and well-guided health educational messages or financial support from the government will help to improve the uptake of ANC services.
See more at: https://pubmed.ncbi.nlm.nih.gov/29562242/
Clinician Response to Child Abuse Presentations in the Vietnamese Hospital Emergency Setting
Ongoing fiscal stability has enabled the National Assembly in Vietnam to turn its attention to improving the health and well-being of women and children. Training pediatric health care professionals in the recognition and response to child abuse presentations in the emergency setting have the potential to improve outcomes for the disproportionate number of vulnerable children presenting to the emergency setting with nonaccidental injuries. This study, led by USYD PhD student Tara Flemington and in collaboration with the University of Medicine and Pharmacy in Ho Chi Minh City, explored the training needs and expectations of the staff preparing to undertake such a clinical training program.
Clinicians felt a strong moral obligation to protect children from further harm, however, encountered several barriers inhibiting this process. Findings significantly shaped the Safe Children Vietnam training program and will also contribute to the development of protocols and improvement of community support services at the study site.
See more at: https://journals.sagepub.com/eprint/SKE5HYESCY6NEVCXCHRA/full
Associate Professor Jennifer Fraser from the Susan Wakil School of Nursing and Midwifery at the University of Sydney has been working in collaboration with Vietnamese partners to streamline access to appropriate services and support for families with children at risk of becoming involved with child protection services.
Drug-resistant tuberculosis and antimicrobial resistance are major emerging health threats to Pacific Island countries
This research will be led by MBI's Co-Director, Professor Ben Marais, and will include trialling bold new strategies to reduce and eventually eliminate DR-TB in the Pacific.
Professor Maraisʼ research will focus on the DR-TB hotspot of Kiribati.
Every person aged 3 or older with TB disease or infection in the capital Tarawa will be treated to prevent the emergence and spread of DR-TB. Patients will be identified by tuberculin skin testing, chest X-ray and/or sputum testing.
The project team will also provide training and mentoring in 6 Pacific Island countries, to improve DR-TB care and prevention, and model the cost-effectiveness of different elimination strategies. The project will start in June 2020 and is funded for 4 years.
The research is being funded under the Medical Research Future Fund’s Global Health Initiative, which focuses on AMR and DR-TB as threats to global and national health security.
Adolescents with HIV in Zimbabwe
Adolescents living with HIV face challenges to their wellbeing and antiretroviral therapy adherence and have poor treatment outcomes. Dr Sarah Bernays and colleagues published a study in the Lancet Global Health that evaluated a peer-led service delivery intervention in Zimbabwe. This is the first youth-led cluster-randomised trial of a multicomponent differentiated service delivery intervention focusing on adolescents' HIV-related and psychosocial outcomes and was funded by ViiV Healthcare's Positive Action for Adolescents Programme.
They found that peer-supported community-based differentiated service delivery can substantially improve HIV virological suppression in adolescents with HIV and should be scaled up to reduce their high rates of morbidity and mortality.
See more at: https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(19)30526-1/fulltext#seccestitle190
Eating in Developing Asia - Trends, Consequences and Policies (title)
A/Prof Anne Marie Thow and Penny Farrell from the Sydney School of Public Health co-authored a chapter in the Asia Development Bank (ADB) publication entitled Asian Development Outlook 2020 Update: Wellness in Worrying Times with the special chapter called Eating in Developing Asia: Trends, Consequences and Policies. The chapter reviews the changing diets, food supply, and food environments in the Asia and Pacific region and describes the prevalence and nature of undernutrition across the region, including anthropometric measures of undernutrition such as stunting, wasting and underweight, “hidden hunger” resulting from micronutrient deficiencies, and dietary caloric deficiencies relating to food security.
Stunting of children in Indonesia
Indonesia is ranked fifth among countries with the highest burden of stunting in children under five. Professor Michael Dibley and colleagues used data derived from the 2013 Indonesia Basic Health Survey to examine the determinants of stunting in children aged 0–2 years.
They found that the odds of stunting increased significantly among children living in households with three or more children under five-years-old, households with five to seven household members, children whose mothers during pregnancy attended less than four antenatal care services, boys, children aged 12–23 months and children who weighed <2500 grams at birth. The odds also increased significantly with the reduction of household wealth index. Integrated interventions to address environment, an individual level associated with stunting in Indonesia, from the environment- to individual-level factors are important to reduce stunting in Indonesia.
See more at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6567198/
Infant and Young Child Nutrition (IYCN) in South Asia
Professor Michael Dibley and Dr Neeloy Alam received funding from the South Asia Food and Nutrition Security Initiative (SAFANSI) trust fund (administered by the World Bank), to undertake qualitative and quantitative studies in India and Sri Lanka.
Promotion of optimal infant and young child feeding (IYCF) practices is a public health intervention to prevent child morbidity, child mortality, and malnutrition. However, working women in urban areas of South Asia, particularly India and Sri Lanka, face unique challenges in feeding infants and young children appropriately, which needs to be fully understood and addressed. Three key areas in the South Asian behaviour, program, and policy contexts are critical failures that are crucial to examine, unravel, and address to strengthen IYCF in the region. The study was conducted in 11 districts of Delhi, the capital city of India, and in 8 Divisional Secretary divisions in Colombo District in Sri Lanka. Based on the results of the quantitative survey and qualitative study, the report presents recommendations for policies and programs to improve health and wellbeing for families.
The report can be accessed here: http://documents1.worldbank.org/curated/en/180421573111860339/pdf/Addressing-Critical-Failures-of-Infant-and-Young-Child-Nutrition-IYCN-in-South-Asia-IYCN-Challenges-Faced-by-Working-Women-in-Urban-Areas-in-India-and-Sri-Lanka.pdf
Social determinants of inequalities in child undernutrition in Bangladesh
Dr Tanvir Huda and colleagues were interested in examining the relative contribution of different social determinants to the socioeconomic inequality in child undernutrition in Bangladesh. Their objective was to measure the extent of socioeconomic-related inequalities in childhood stunting and identify the key social determinants that potentially explain these inequalities in Bangladesh. Household economic status, maternal and paternal education, health-seeking behaviour of the mothers, sanitation, fertility, and maternal stature were the major contributors to the disparity in stunting prevalence in Bangladesh. Equity is a critical component of sustainable development goals. Health policymakers should work together across sectors and develop strategies for effective intersectoral actions to adequately address the social determinants of equity and reduce inequalities in stunting and other health outcomes.
See more at: https://pubmed.ncbi.nlm.nih.gov/28271627/
