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Proactive mental health care for children of parents with mental disorders called for

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A Queen’s University professor is the lead author of a new paper advocating for better mental health care for children of parents with severe mental illnesses.

Anne Duffy is a psychiatrist and professor in the university’s psychiatry department who has spent 25 years researching the genetic, biological, psychological and social factors involved with the link between children living with parents with mental illnesses such as depression, bipolar disorder and schizophrenia, and those children’s high risk for developing mental illness themselves.
Now, Duffy and her co-authors are using their latest published research, which points to decades of research data, to make recommendations on how to address what their paper describes as a “largely overlooked population” of children of parents with mental disorders who are “at high risk for reduced well-being and poor mental health.”
According to cited research, 55 per cent of youth whose parents suffer from a severe mental illness are at risk of developing a mental disorder before the age of 27, as well as facing “reduced well-being and increase psychosocial and academic problems.”

Duffy worked alongside scientists, clinicians and experts from 37 different countries to produce the paper, which was published on July 20 in the online journal Nature Mental Health.

“This is an international consortium of experts from complementary disciplines who got together, and we wrote this evidence-based review and call to action to advocate for proactive support and services for children at familial risk of severe mental illness,” Duffy told the Whig-Standard on Monday.

“One of the most robust risk factors for a mental disorder is having a family history, so having a parent with one of those disorders: major depression, bipolar disorder, schizophrenia,” Duffy said. “Currently, the way our system works is we take patients as individuals; we don’t base this on the family. If an adult comes in with schizophrenia, other than child-protection issues, we don’t ask routinely about the children and their mental health, and we don’t track them.”

Duffy said that currently in Canada and other places in the world, children would have to present as symptomatic themselves to access their own services.

“We’re sort of seeing this disconnect between the adult and the children services, and also, shouldn’t we be incorporating monitoring the mental health of these children at high risk as proactive prevention and health promotion, being mindful not to stigmatize or over-pathologize, because a lot of the kids are well?”

According to the paper, studies have been able to identify high-risk children of parents with severe mental illnesses who could benefit from proactive surveillance and early intervention efforts.

The many years of research that has led to Duffy and her co-authors’ paper has allowed them to formulate recommendations for policymakers, including Duffy’s 25-year-long Canadian Institutes of Health Research-funded study identified as Flourish, following children at risk of bipolar disorder due to having a parent with that disorder.

Duffy’s Canadian high-risk offspring bipolar study has worked to map biological and psychological risk factors and genetic determinants in the quest to understand the onset of bipolar disorder.

“It’s been a hugely successful study around the world,” Duffy said. “When I came to Queen’s, I was able to get a further grant, and we were able to improve individualized risk prediction looking at models of predicting for individuals based on their own family and personal history, what their risk wold be in the next one to five years. That wasn’t to scare anybody, but it was meant to empower families and patients, young people, so they can make good choices for themselves.”

Queen’s is launching a parallel research program for university students, looking at common mental disorders in post-secondary students.

That research and more has informed the recently published paper, as well as the recommendations that its authors are making to policymakers.

“We’ve reviewed the current evidence and we’ve distilled that into specific recommendations about a developmental approach,” Duffy said. “We advocated that the next steps would be through striking a working group, say through the (World Health Organization) or a similar organization, to organize a standard for supporting care for children at familial risk of severe mental illness. We’ve pretty much clarified from our perspective the next steps.”

The paper puts forward five recommendations, beginning with the creation of a task force of multidisciplinary experts, stakeholders and families on an international level to develop guidelines for supporting children’s well-being.

Further, the paper recommends that new training for psychiatrists and new mental health care pathways for children be developed, and then that academics, health-care providers, research communities, funding agencies and stakeholders be engaged to support both children and their parents through a number of initiatives and resources.

“If there was a recognized importance of asking about and tracking the mental health of children of these patients who are already identified in the adult psychiatric system, for example, that would be a really good starting place (and lead to) more collaborate work between adolescent and adult services in psychiatry (and) in community mental health,” Duffy said.

While faculty at universities like Queen’s have historically been well positioned to help inform the development of clinical practice, Duffy believes there is room for improvement.

“We certainly need to do more of that,” she said. “It’s getting the right people around the table. Hopefully, if this is an identified priority with those involved with planning out care, then hopefully they would invite us to the table. … We really do need to get back to the table. We’re currently not at the table, and I don’t know what’s happened. I think there was a different political philosophy in Ontario, and then there was COVID. We really need to have the experts around the table with the politicians in order to be pragmatic and translate the findings into evidence-based care, but also to show the cost-effectiveness of this to the taxpayer.”

Duffy said there are many things that can be done today to mitigate the risk for negative outcomes in young people.

“We’re negligent as a society if we continue to turn a blind eye to this,” she said.

After working with parents and their children for 25 years in her research, Duffy sees the need and the commitment to the issue on the part of families.

“What’s lacking is the commitment and willpower from the powers that be that organize care in this province and country,” she said.

“We arguably have the best data in the world … we’ve done really excellent work, like many Canadian research groups have, and sometimes these findings get more readily uptaken around the rest of the world than they do in Canada. I’m really passionate about this because I think we can make a difference in my own lifetime, and today, for young people.”

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Pediatric group says doctors should regularly screen kids for reading difficulties

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The Canadian Paediatric Society says doctors should regularly screen children for reading difficulties and dyslexia, calling low literacy a “serious public health concern” that can increase the risk of other problems including anxiety, low self-esteem and behavioural issues, with lifelong consequences.

New guidance issued Wednesday says family doctors, nurses, pediatricians and other medical professionals who care for school-aged kids are in a unique position to help struggling readers access educational and specialty supports, noting that identifying problems early couldhelp kids sooner — when it’s more effective — as well as reveal other possible learning or developmental issues.

The 10 recommendations include regular screening for kids aged four to seven, especially if they belong to groups at higher risk of low literacy, including newcomers to Canada, racialized Canadians and Indigenous Peoples. The society says this can be done in a two-to-three-minute office-based assessment.

Other tips encourage doctors to look for conditions often seen among poor readers such as attention-deficit hyperactivity disorder; to advocate for early literacy training for pediatric and family medicine residents; to liaise with schools on behalf of families seeking help; and to push provincial and territorial education ministries to integrate evidence-based phonics instruction into curriculums, starting in kindergarten.

Dr. Scott McLeod, one of the authors and chair of the society’s mental health and developmental disabilities committee, said a key goal is to catch kids who may be falling through the cracks and to better connect families to resources, including quicker targeted help from schools.

“Collaboration in this area is so key because we need to move away from the silos of: everything educational must exist within the educational portfolio,” McLeod said in an interview from Calgary, where he is a developmental pediatrician at Alberta Children’s Hospital.

“Reading, yes, it’s education, but it’s also health because we know that literacy impacts health. So I think that a statement like this opens the window to say: Yes, parents can come to their health-care provider to get advice, get recommendations, hopefully start a collaboration with school teachers.”

McLeod noted that pediatricians already look for signs of low literacy in young children by way of a commonly used tool known as the Rourke Baby Record, which offers a checklist of key topics, such as nutrition and developmental benchmarks, to cover in a well-child appointment.

But he said questions about reading could be “a standing item” in checkups and he hoped the society’s statement to medical professionals who care for children “enhances their confidence in being a strong advocate for the child” while spurring partnerships with others involved in a child’s life such as teachers and psychologists.

The guidance said pediatricians also play a key role in detecting and monitoring conditions that often coexist with difficulty reading such as attention-deficit hyperactivity disorder, but McLeod noted that getting such specific diagnoses typically involves a referral to a specialist, during which time a child continues to struggle.

He also acknowledged that some schools can be slow to act without a specific diagnosis from a specialist, and even then a child may end up on a wait list for school interventions.

“Evidence-based reading instruction shouldn’t have to wait for some of that access to specialized assessments to occur,” he said.

“My hope is that (by) having an existing statement or document written by the Canadian Paediatric Society … we’re able to skip a few steps or have some of the early interventions present,” he said.

McLeod added that obtaining specific assessments from medical specialists is “definitely beneficial and advantageous” to know where a child is at, “but having that sort of clear, thorough assessment shouldn’t be a barrier to intervention starting.”

McLeod said the society was partly spurred to act by 2022’s “Right to Read Inquiry Report” from the Ontario Human Rights Commission, which made 157 recommendations to address inequities related to reading instruction in that province.

He called the new guidelines “a big reminder” to pediatric providers, family doctors, school teachers and psychologists of the importance of literacy.

“Early identification of reading difficulty can truly change the trajectory of a child’s life.”

This report by The Canadian Press was first published Oct. 23, 2024.

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UK regulator approves second Alzheimer’s drug in months but government won’t pay for it

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LONDON (AP) — Britain’s drug regulator approved the Alzheimer’s drug Kisunla on Wednesday, but the government won’t be paying for it after an independent watchdog agency said the treatment isn’t worth the cost to taxpayers.

It is the second Alzheimer’s drug to receive such a mixed reception within months. In August, the U.K. regulator authorized Leqembi while the same watchdog agency issued draft guidance recommending against its purchase for the National Health Service.

In a statement on Wednesday, Britain’s Medicines and Healthcare regulatory Agency said Kisunla “showed some evidence of efficacy in slowing (Alzheimer’s) progression” and approved its use to treat people in the early stages of the brain-robbing disease. Kisunla, also known as donanemab, works by removing a sticky protein from the brain believed to cause Alzheimer’s disease.

Meanwhile, the National Institute for Health and Care Excellence, or NICE, said more evidence was needed to prove Kisunla’s worth — the drug’s maker, Eli Lilly, says a year’s worth of treatment is $32,000. The U.S. Food and Drug Administration authorized Kisunla in July. The roll-out of its competitor drug Leqembi has been slowed in the U.S. by spotty insurance coverage, logistical hurdles and financial worries.

NICE said that the cost of administering Kisunla, which requires regular intravenous infusions and rigorous monitoring for potentially severe side effects including brain swelling or bleeding, “means it cannot currently be considered good value for the taxpayer.”

Experts at NICE said they “recognized the importance of new treatment options” for Alzheimer’s and asked Eli Lilly and the National Health Service “to provide additional information to address areas of uncertainty in the evidence.”

Under Britain’s health care system, most people receive free health care paid for by the government, but they could get Kisunla if they were to pay for it privately.

“People living with dementia and their loved ones will undoubtedly be disappointed by the decision not to fund this new treatment,” said Tara Spires-Jones, director of the Centre for Discovery Brain Sciences at the University of Edinburgh. “The good news that new treatments can slow disease even a small amount is helpful,” she said in a statement, adding that new research would ultimately bring safer and more effective treatments.

Fiona Carragher, chief policy and research officer at the Alzheimer’s Society, said the decision by NICE was “disheartening,” but noted there were about 20 Alzheimer’s drugs being tested in advanced studies, predicting that more drugs would be submitted for approval within years.

“In other diseases like cancer, treatments have become more effective, safer and cheaper over time,” she said. “ We hope to see similar progress in dementia.”

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.

The Canadian Press. All rights reserved.

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Women in states with bans are getting abortions at similar rates as under Roe, report says

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Women living in states with abortion bans obtained the procedure in the second half of 2023 at about the same rate as before the U.S. Supreme Court overturned Roe v. Wade, according to a report released Tuesday.

Women did so by traveling out of state or by having prescription abortion pills mailed to them, according to the #WeCount report from the Society of Family Planning, which advocates for abortion access. They increasingly used telehealth, the report found, as medical providers in states with laws intended to protection them from prosecution in other states used online appointments to prescribe abortion pills.

“The abortion bans are not eliminating the need for abortion,” said Ushma Upadhyay, a University of California, San Francisco public health social scientist and a co-chair of the #WeCount survey. “People are jumping over these hurdles because they have to.”

Abortion patterns have shifted

The #WeCount report began surveying abortion providers across the country monthly just before Roe was overturned, creating a snapshot of abortion trends. In some states, a portion of the data is estimated. The effort makes data public with less than a six-month lag, giving a picture of trends far faster than the U.S. Centers for Disease Control and Prevention, whose most recent annual report covers abortion in 2021.

The report has chronicled quick shifts since the Supreme Court’s Dobbs v. Jackson Women’s Health Organization ruling that ended the national right to abortion and opened the door to enforcement of state bans.

The number of abortions in states with bans at all stages of pregnancy fell to near zero. It also plummeted in states where bans kick in around six weeks of pregnancy, which is before many women know they’re pregnant.

But the nationwide total has been about the same or above the level from before the ruling. The study estimates 99,000 abortions occurred each month in the first half of 2024, up from the 81,000 monthly from April through December 2022 and 88,000 in 2023.

One reason is telehealth, which got a boost when some Democratic-controlled states last year began implementing laws to protect prescribers. In April 2022, about 1 in 25 abortions were from pills prescribed via telehealth, the report found. In June 2024, it was 1 in 5.

The newest report is the first time #WeCount has broken down state-by-state numbers for abortion pill prescriptions. About half the telehealth abortion pill prescriptions now go to patients in states with abortion bans or restrictions on telehealth abortion prescriptions.

In the second half of last year, the pills were sent to about 2,800 women each month in Texas, more than 1,500 in Mississippi and nearly 800 in Missouri, for instance.

Travel is still the main means of access for women in states with bans

Data from another group, the Guttmacher Institute, shows that women in states with bans still rely mostly on travel to get abortions.

By combining results of the two surveys and comparing them with Guttmacher’s counts of in-person abortions from 2020, #WeCount found women in states with bans throughout pregnancy were getting abortions in similar numbers as they were in 2020. The numbers do not account for pills obtained from outside the medical system in the earlier period, when those prescriptions most often came from abroad. They also do not tally people who received pills but did not use them.

West Virginia women, for example, obtained nearly 220 abortions monthly in the second half of 2023, mostly by traveling — more than in 2020, when they received about 140 a month. For Louisiana residents, the monthly abortion numbers were about the same, with just under 700 from July through December 2023, mostly through shield laws, and 635 in 2020. However, Oklahoma residents obtained fewer abortions in 2023, with the monthly number falling to under 470 from about 690 in 2020.

Telehealth providers emerged quickly

One of the major providers of the telehealth pills is the Massachusetts Abortion Access Project. Cofounder Angel Foster said the group prescribed to about 500 patients a month, mostly in states with bans, from its September 2023 launch through last month.

The group charged $250 per person while allowing people to pay less if they couldn’t afford that. Starting this month, with the help of grant funding that pays operating costs, it’s trying a different approach: Setting the price at $5 but letting patients know they’d appreciate more for those who can pay it. Foster said the group is on track to provide 1,500 to 2,000 abortions monthly with the new model.

Foster called the Supreme Court’s 2020 decision “a human rights and social justice catastrophe” while also saying that “there’s an irony in what’s happened in the post-Dobbs landscape.”

“In some places abortion care is more accessible and affordable than it was,” she said.

There have no major legal challenges of shield laws so far, but abortion opponents have tried to get one of the main pills removed from the market. Earlier this year, the U.S. Supreme Court unanimously preserved access to the drug, mifepristone, while finding that a group of anti-abortion doctors and organizations did not have the legal right to challenge the 2000 federal approval of the drug.

This month, three states asked a judge for permission to file a lawsuit aimed at rolling back federal decisions that allowed easier access to the pill — including through telehealth.

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