Quality of life study for young children with heart disease

Young children with heart disease and their families may have poorer quality of life than the general population, leading to calls for routine screening to enable early intervention and better outcomes.

A study by medical researchers from UNSW Sydney and the Sydney Children’s Hospitals Network has identified a number of potentially modifiable factors that contributed significantly to child quality of life.

The paper – the largest Australian study on the quality of life in young children with complex congenital heart disease (CHD) – was recently published in the Journal of Pediatrics.

“The findings are striking and highlight the significant challenges children with heart disease and their families face,” said study author Associate Professor Nadine Kasparian from UNSW Medicine.

The study included young children aged one to five years, all of whom had undergone at least one heart operation.

“We examined their and their mums’ physical, emotional, social and cognitive health, using a well-established quality of life measure,” said Dominique Denniss, a UNSW Medicine Honours student and author on the study.

“We looked at quality of life from a multi-dimensional perspective, taking into account a whole range of factors that can influence a child’s sense of wellbeing.”

Overall, the study found that many children with complex CHD have meaningful impairments in quality of life, compared to their healthy peers, especially when it comes to their emotional health.

“Our youngest children in the study, aged between one and two years, showed functioning that was below what we might expect in the general population for almost every domain,” Professor Kasparian said.

“For our two to five year-olds, we found one very striking result – emotional functioning was, on average, more than 10 points below what we might expect to see for healthy children the same age. That’s an important difference.”

The study found that feeding difficulties and mothers’ levels of psychological stress played an important role for children’s quality of life.

Additional factors were having the most complex form of congenital heart disease (functional single ventricle CHD) or having another health condition in addition to heart disease.

The results were similar for mums, with key factors for lower health-related quality of life being difficulties in their family, psychological distress, whether their child had any additional physical conditions, and perceiving their child as having a difficult temperament.

While the study highlights profound difficulties for young children with heart disease and their families, it is also important because these factors can potentially be addressed.

“We now have a roadmap showing us what we can do to make a difference for these children and their families. We now know what avenues there are for better care and support,” Professor Kasparian said.

“For example, if maternal psychological stress is playing a role in influencing quality of life, there are evidence-based interventions and supports we can offer that can make a difference.

“Similarly, with feeding difficulties, there are things that we can do in hospital and in the community to help our babies with feeding difficulties.

“There are also ways we can nurture the developing relationship between sick babies and their parents to improve overall quality of life.”

Based on their results, the researchers call for routine screening of health-related quality of life for all children with complex CHD, so they don’t continue to fall through the cracks. They also make a series of recommendations for improving clinical practice and health policy.

Congenital heart disease is any structural abnormality of the heart that babies are born with – some are diagnosed in utero, and some soon after birth. CHD affects about 1 in 100 newborns, or about 1.35 million babies each year around the world.

Australia’s first National Childhood Heart Disease Action Plan was announced in February this year, and is currently in public consultation phase.

Food environment impacts consumption and health

Doubling your portion sizes could be the key to a healthier diet, according to the results of a new Deakin University study.

Deakin Business School’s Professor of Marketing Chris Dubelaar worked with researchers in France and Australia to test if doubling the portion size of healthy foods increased consumption as it does with unhealthy foods, and if the amount of food eaten differed according to the eating environment.

The findings from Professor Dubelaar’s study showed the influence food environments have on consumption – with factors such as portion size and even what we watch while eating having an impact on health-related behaviours.

The first part of the study involved 153 French university students who were given small or large servings of a healthy (apple chips) or unhealthy (potato chips) snack in a laboratory setting to eliminate potential social influences.

For the second study, 77 high school students attending a film festival were given a small or large serve of baby carrots as a snack. The students watched either a film about a restaurant that included many eating scenes or a romantic comedy with no food-focused content.

The researchers found that doubling the portions increased consumption of both healthy and unhealthy snacks, meaning people could potentially increase their portion sizes to fill up on healthy food and avoid junk food.

In the second study, however, the portion size effect with the healthy snacks was influenced by the movie being watched, with the food-related film viewers eating less than those watching the other film – showing those participants who watched people eating on film felt less inclined to indulge themselves.

Professor Dubelaar said the study findings presented interesting insights into the potential for manipulating portion size as a way to increase healthy eating.

“Previous studies have found that people will eat more unhealthy food when presented with a large portion size,” he said.

“The results of our current study tell us that this portion size effect also holds true with healthy foods, which opens up the potential for adjusting portion size when trying to encourage healthier eating habits.

“For example, parents trying to get their children to eat more veggies could serve up larger portions. This would also work for healthy snacks such as fruit or any food you want someone to eat more of.”

Professor Dubelaar said it was particularly interesting to find that during the food-oriented film, all participants ate the same amount of food from both the large and the small portions.

“This tells us that our food environment has an even larger impact on our consumption than we thought. This also provides an opportunity for those seeking to control intake to consider their environment when they’re eating to help reduce the effects of portion size,” he said.

Professor Dubelaar’s full study Might bigger portions of healthier snack food help? has now been published online ahead of print publication in the Food Quality and Preference journal.

The study was conducted by researchers at Deakin University, the Grenoble Ecole de Management, University of Technology Sydney and Macquarie Graduate School of Management.

Medical research building the economy

Australia’s investment in medical research has significantly boosted the country’s welfare, economy and future potential, according to a new study launched at Parliament House, Canberra.

The Association of Australian Medical Research Institutes (AAMRI) President Professor Tony Cunningham AO released a report of the study in October and said for every dollar invested in medical research, Australia gains a $3.90 return to the economy.

“A near $4-to-$1 is an extraordinary return on investment. This return is far higher than the level needed to secure government funding for just about any other investment in infrastructure,” Professor Cunningham said.

The new study, by KPMG Economics, has identified that the medical research sector – including the downstream medical technology and pharmaceutical sector – employs more than 110,000 people.

It also found that the health gains that flow from medical research result in a larger and more productive national workforce.

“Investing in medical research must remain a top priority for Australia – not only for the health and wellbeing of all Australians, but also to help build a strong economy through employment, knowledge creation and through our burgeoning medical technology and pharmaceutical export industry,” Professor Cunningham said.

The findings demonstrate the national workforce is estimated to be significantly larger than it would have been in the absence of medical research – 23,000 full-time employees more.

The report also shows today’s economy, as measured by GDP, is $2.6 billion larger as a result of historical medical research. Significantly, welfare, a measure of how well off we are as a population, is $1.5 billion higher that it would have been in the absence of medical research.

Professor Cunningham said the in-depth study of the impact of medical research in Australia was a timely reminder that we can only expect the positive health and economic outcomes if we are willing to put in the investment.

“I’d like to thank the Australian community and our politicians for making that investment,” he said.

To view the full report, visit https://aamri.org.au/KPMGReport.

[Correspondence] Differences in clinical practice guideline authorship by gender

Clinical practice guidelines (CPGs) are systematically developed statements designed to guide clinical decision making for patient populations around the world. The content of CPGs should reflect international diversity, as should the authors who write them.1 Although studies have evaluated gender representation of authors of original medical research,2,3 the gender of CPG authors has not been studied. We sought to evaluate the representation of female physician authors, and of female authors overall, in CPGs.

[Perspectives] Sad stories of the death of kings

For the medical students and researchers of the UK’s Oxford University, the dreaming spires are more often seen distantly from a window than experienced close up. Preclinical medics are taught in modern, characterless buildings located up on leafy South Parks Road; and since the Radcliffe Infirmary was repurposed as Radcliffe Humanities some years ago, clinical students must get the bus or cycle out to the newer hospitals in Headington to pursue their studies. Since September a small team from Oxford’s Centre for Evidence-Based Medicine (CEBM) has managed to commandeer a prime spot in the heart of the city: the Bodleian Library, an attraction popular with both humanities scholars and tourists.

AMA success on My Health Record

AMA lobbying regarding the My Health Record system has paid off, with the Senate Committee conducting an inquiry into it accepting many of the AMA’s suggestions and the Government moving to legislate some of them.

Health Minister Greg Hunt has announced measures to strengthen safety and privacy measures, and to protect against domestic violence and misuse of the system.

“We have examined the recommendations from the Senate Inquiry, we have listened to concerns raised by a range of groups and My Health Record users,” he said.

The Government is moving amendments to Labor’s original legislation to further strengthen the My Health Record Act.

These include:

Increasing penalties for improper use of a My Health Record.
Strengthening provisions to safeguard against domestic violence. The proposed provisions will ensure that a person cannot be the authorised representative of a minor if they have restricted access to the child, or may pose a risk to the child, or a person associated with the child.
Prohibiting an employer from requesting and using health information in an individual’s My Health Record and protecting employees and potential employees from discriminatory use of their My Health Record. Importantly, employers or insurers cannot simply avoid the prohibition by asking the individuals to share their My Health Record information with them.
No health information or de-identified data to be released to private health insurers, and other types of insurers for research or public health purposes.
The proposed amendments also reinforce that the My Health Record system is a critical piece of national health infrastructure operating for the benefit of all Australians, by removing the ability of the System Operator to delegate functions to organisations other than the Department of Health and the Chief Executive of Medicare.

“Furthermore, the Government will conduct a review looking into whether it is appropriate that parents have default access to the records of 14-17 year-olds,” the Minister said.

The proposed amendments are in addition to those announced in July, which have already passed the Lower House. They include that law enforcement agencies can only access a person’s My Health Record with a warrant or court order and anyone who chooses to cancel a record at any time will have that record permanently deleted.

AMA President Dr Tony Bartone supported the Government’s proposed amendments.

“We initially worked with the Government on a first draft of the Bill to fix the concerns about warrant access, and to allow people to delete their record, which gives them the practical ability to opt-out at any time should they choose,” Dr Bartone said.

“These amendments are now in the Bill.

“We also called for a significant national communications effort to ensure that people know more about the My Health Record.

“In a positive move, the Senate Committee agrees that the legislation should now be passed.

“The AMA also supports the Labor amendments to the Bill. We consulted Labor about their suggestions and agree that they further improve the Bill, and provide stronger protections for our patients.

“We have had successful Committee review of the legislation, improvements made with the input of the Opposition, and consultation to hear and respond to major stakeholder concerns.

“We also welcome the commitment to review the issue of parental access to the records of 14-17 year-olds.

“This and other concerns that arise can be addressed through policy change once the My Health Record Act is passed.”

Shadow Health Minister Catherine King said more needed to be done.

“The Liberals are finally moving to clean up their My Health Record mess – by adopting Labor’s proposed changes – but they still need to act and extend the opt-out period,” she said.

In its final report, the Senate Standing Committee on Community Affairs has acknowledged the AMA’s input to the inquiry and the AMA agrees with many of the Committee recommendations.

Senior executives and doctors from the AMA appeared before Senate hearings on the matter, as well as submitting written recommendations for the way forward with My Health Record.

Of particular concern for the AMA were privacy issues and the sharing of information to third parties from a patient’s My Health Record.

The AMA called for warrant-only access to My Health Record data for law enforcement and other Government purposes; permanent deletion of all data in a patient’s My Health Record if the patient opts out; and stronger provisions to prohibit health insurer and employer access to My Health Record data – this includes a prohibition on health insurers access under the secondary use framework.

CHRIS JOHNSON

[Comment] Academic promotion policies and equity in global health collaborations

When global health researchers in low-income and middle-income countries (LMICs) collaborate with academics in high-income countries (HICs), these partnerships often result in disproportionate benefits for the HIC researchers who gain more opportunities for authorship, more prominent authorship positions, more opportunities to present at conferences, and more funding for administrative and student support for LMIC colleagues. This inequity gap persists despite existing guidelines for good collaborative practice and repeated calls to improve global health research partnerships.

[The Lancet Commissions] The Lancet Commission on global mental health and sustainable development

The Sustainable Development Goals (SDGs) represent an exponential advance from the Millennium Development Goals, with a substantially broader agenda affecting all nations and requiring coordinated global actions. The specific references to mental health and substance use as targets within the health SDG reflect this transformative vision. In 2007, a series of papers in The Lancet synthesised decades of interdisciplinary research and practice in diverse contexts and called the global community to action to scale up services for people affected by mental disorders (including substance use disorders, self-harm, and dementia), in particular in low-income and middle-income countries in which the attainment of human rights to care and dignity were most seriously compromised.

[Editorial] World Flu Day: momentum from China for influenza control

Nov 1 marks the first World Flu Day and was formally launched at the Asian-Pacific Centenary Spanish 1918-flu symposium in Shenzhen, China. The campaign was developed by George F Gao, director of the China Center for Disease Control and Prevention (CDC), in collaboration with other leading influenza specialists, including Yoshihiro Kawaoka from University of Wisconsin, WI, USA, Mark von Itzstein from Griffith University, QLD, Australia, and Kwok-Yung Yuen from Hong Kong University, Hong Kong. Gao told The Lancet that World Flu Day had four major purposes: to commemorate the centenary of the 1918–19 influenza pandemic; to raise public awareness of influenza; to accelerate scientific innovation and basic research efforts toward remaining challenges of influenza, particularly the development of a universal flu vaccine; and to push for stronger global political will in continuing the support of influenza prevention and control.

[Correspondence] Gender bias in publishing

In their Comment, Jamie Lundine and colleagues (May 5, p 1754)1 asserted that a gendered system of social practices exists that disadvantages women in academic research. We are troubled with the Comment’s level of intellectual rigour and exclusion of important facts.