The ADHD link to Premature Death, with a Higher Risk for Women

ADHD is a true disorder and should not be taken lightly

emergency entrance image
ADHD is a true disorder and should not be taken lightly. It’s common for people with ADHD to be impulsive and act without thinking, which can lead to fatal accidents. Image by Glen Steven Colen.

People with attention-deficit hyperactivity disorder (ADHD) are more than twice as likely to die prematurely as those without the common disorder.

In a study of more than 2 million people, Danish researchers found that accidents were the most common cause of premature death among people with ADHD. And the risk was significantly higher for women and those diagnosed in adulthood, the researchers added.

Abstract

BACKGROUND
Attention deficit hyperactivity disorder (ADHD) is a common mental disorder associated with factors that are likely to increase mortality, such as oppositional defiant disorder or conduct disorder, criminality, accidents, and substance misuse. However, whether ADHD itself is associated with increased mortality remains unknown. We aimed to assess ADHD-related mortality in a large cohort of Danish individuals.

METHODS
By use of the Danish national registers, we followed up 1·92 million individuals, including 32,061 with ADHD, from their first birthday through to 2013. We estimated mortality rate ratios (MRRs), adjusted for calendar year, age, sex, family history of psychiatric disorders, maternal and paternal age, and parental educational and employment status, by Poisson regression, to compare individuals with and without ADHD.

FINDINGS
During follow-up (24·9 million person-years), 5580 cohort members died. The mortality rate per 10,000 person-years was 5·85 among individuals with ADHD compared with 2·21 in those without (corresponding to a fully adjusted MRR of 2·07, 95% CI 1·70-2·50; p<0·0001). Accidents were the most common cause of death. Compared with individuals without ADHD, the fully adjusted MRR for individuals diagnosed with ADHD at ages younger than 6 years was 1·86 (95% CI 0·93-3·27), and it was 1·58 (1·21-2·03) for those aged 6-17 years, and 4·25 (3·05-5·78) for those aged 18 years or older. After exclusion of individuals with oppositional defiant disorder, conduct disorder, and substance use disorder, ADHD remained associated with increased mortality (fully adjusted MRR 1·50, 1·11-1·98), and was higher in girls and women (2·85, 1·56-4·71) than in boys and men (1·27, 0·89-1·76).

INTERPRETATION
ADHD was associated with significantly increased mortality rates. People diagnosed with ADHD in adulthood had a higher MRR than did those diagnosed in childhood and adolescence. Comorbid oppositional defiant disorder, conduct disorder, and substance use disorder increased the MRR even further. However, when adjusted for these comorbidities, ADHD remained associated with excess mortality, with higher MRRs in girls and women with ADHD than in boys and men with ADHD. The excess mortality in ADHD was mainly driven by deaths from unnatural causes, especially accidents.

Sources and more information

  • Mortality in children, adolescents, and adults with attention deficit hyperactivity disorder: a nationwide cohort study, NCBI PMID: pubmed 25726514, 2015 May 30.
  • The Surprising Link Between ADHD and Premature Death, news.health, February 26, 2015.

New Law to muzzle Whistleblowers

The Trade Secrets Directive poses a severe threat to freedom of information

This post content is published via EurActiv, the European Media Network present in 12 EU capitals.

whitsle-blowers-demonstrato
The new Trade Secrets Directive is meant to protect businesses from industrial espionage. But it will muzzle whistleblowers on public health and environment issues because it puts journalists, scientists and public authorities at risk of being crushed in court by corporations, writes James Thornton.

Whistleblowers are often at the heart of the world’s biggest stories. From Edward Snowden to Julian Assange, they have sparked repeated storms of controversy. The EU considers whistleblowers so vulnerable that it recently amended its own staff regulations to give them greater legal protection. Yet, when it comes to industry, the Commission is happy to propose laws that put whistleblowers in real danger of financial ruin.

On 16 June, policymakers in the European Parliament’s legal affairs committee will vote on the draft Trade Secrets Directive. It aims to protect companies against industrial espionage and unfair competition. Unfortunately, the draft law poses a severe threat to freedom of information.

The vote will fix the final form of a law which was moulded by corporations with almost no input from organisations working to protect public health. Resource-stretched EU officials gratefully accepted input from companies with a strong interest in shaping the EU’s transparency laws – among them, Michelin and energy giants Alstom and DuPont– as well as lobbyists BusinessEurope and the Trade Secrets and Innovation Coalition. This will have an insidious effect on public faith in EU institutions

See you in court?

The Trade Secrets Directive allows companies to withhold information on the health and environmental impact of their operations from the public. It does this by giving them the power to sue anyone disclosing data without their consent. This means public authorities, journalists and scientists risk being financially crushed in court by multi-million pound corporations. This is not only dangerous to society—it also flies in the face of that recently amended whistleblower policy.

It is not just a few brave individuals who will feel the brunt of the law. In passing it, the EU will make its own job more difficult. ClientEarth often challenges public authorities over their secrecy on issues like emissions, clinical trials and food safety. We know public authorities are already under pressure from industry not to disclose business information, even when they are legally obliged to do so. In its current form, the directive gives companies even more power over public authorities. This damages democracy, because voters will have less of a say than the head of a company.

Think back to the Tamiflu scandal. In 2009, European governments stockpiled the drug to treat swine flu amid global panic about the disease. At the time, we didn’t realise Tamiflu was ineffective at treating serious influenza complications, but Roche did. The drug’s shortcomings only came to light after health network Cochrane fought for access to Roche’s clinical trial data, and won. The Trade Secrets Directive would have jeopardised that outcome, and the data might still be under wraps.

Which law will be enforced?

The failings of the directive don’t stop there. It looks almost certain that the Trade Secrets Directive will put the EU at odds with its own commitment on access to information. The EU is a signatory to the Aarhus Convention, which guarantees people access to business information affecting health and the environment. By law, the Aarhus Convention should prevail over the Trade Secrets Directive. However, with no reference to the Aarhus Convention in the directive, public authorities can play it safe by simply refusing to disclose business information. In contrast to the potential penalties in the Trade Secrets Directive, public authorities do not risk paying out damages when they withhold information in breach of access to information laws.

The vote on 16 June is crucial for the Trade Secrets Directive. The draft law shaped by this vote will likely be very close to the final law passed by the EU. But there is still time to fix the directive and ensure it protects those releasing information in the public interest.

If policymakers implement these changes, the EU will have taken an important step to regain public trust, whilst protecting people and the planet. You can help them do this and stop the Trade Secrets Directive blocking access to information. Sign the petition. Show the EU you care about transparency, health and the environment.

Informer n’est pas un délit

Elise Lucet et la directive secret des affaires

En Europe, un premier vote pour la directive secret des affaires aura lieu mardi 16 Juin 2015. Cette loi réduira considérablement votre droit à l’information.
Mobilisez-vous et signez pour son retrait.

En savoir plus

Wyeth’s Estrogens – American Journal of Obstetrics and Gynecology, 1940s advert

Diethylstilbestrol (DES) was the first synthetic estrogen to be marketed to women

Wyeth's-Estrogens advert image
Diethylstilbestrol (DES), the first synthetic estrogen to be marketed to women.
  • An ad from the American Journal of Obstetrics and Gynecology from 1943.
  • Image sources: Protecting Our Bodies from Hormone-Disrupting Chemicals: A Precautionary Tale, thesolutionsjournal, Feb 2011.
  • Watch our diaporama and DES adverts album on Flickr.
More DES DiEthylStilbestrol Resources

The Patient Portal: offering cancer patients access to their own records

An innovative initiative from the National Cancer Registration Service in the UK

This post content is published by Public health matters, the official blog of Public Health England, providing expert insight on the organisation’s work and all aspects of public health.

image of using-online-tools
Every patient diagnosed with a malignant tumour in England can now access their own information and records online with the patient portal. Image by Betta Living.

The National Cancer Registration Service (NCRS) collects information about every patient diagnosed with a malignant tumour in England. You can read this blog on the importance of using this data. Now, through an innovative project, patients can also access this information.

Back in 2012 a group of brain tumour patients asked for online access to the records that the National Cancer Registration Service held about them.  Since then we have been working with Cancer Research UK, the brain tumour charity brainstrust, patients and healthcare professionals to make this possible.

The Patient Portal

The Patient Portal is a secure online system where patients can access the records held about them by the NCRS. Patients can view various types of information, including reports on tissue samples and scans, data on radio and chemotherapy and information about their attendance at hospital and treatments. Alongside this, the portal has a quality of life tool, space for users to add their own notes, keep a list of contacts and directory of links to helpful information about support, treatment, clinical trials and research.

A pilot began in November 2013 for brain tumour patients and in July 2014 we extended to other cancer types with eleven clinical teams across England offering the portal to patients with melanoma, brain, colorectal, prostate and kidney cancer.

Why is this important?

Providing patients with their cancer records lets them process the information at their own time and pace and read it in-between appointments. In turn this allows  them to have more informed conversations with their clinical teams and carers.

As well as potentially helping patients to understand their own diagnosis, it also allows a patient to tell us if some of their records are missing or incorrect, thus improving the accuracy and quality of the data we hold.

Our findings so far

We wanted to understand whether patients would use the system and how, the benefits that they would get from accessing their records, what support they would need and what the impact on the clinical teams treating them would be.

We found that around a quarter of those asked wanted access to their cancer records – a larger proportion than expected. By the end of the pilot in March 2015, 88 patients had asked for access to their records and 50 had accessed them. Although numbers are relatively low, the users were positive about the service and 86% would recommend it to others.

Our Pilot Phase Evaluation Report, which has full details of what we did, is available online.

What next…

We have shown that patients would like to use the portal but need to work on how we can offer this to a much larger number of patients. Eventually we would like every cancer patient in England to be able to access their own cancer registry record if they choose.

To help us achieve this, we will be working to make cancer registry records available to users of Patients Know Best. Patients Know Best provide a patient held record designed to empower patients to manage their care and help clinicians share information and engage with patients in powerful new ways.  By allowing users of Patients Know Best to add their NCRS records easily we will increase the number of patients who can benefit from this service.  It will also allow them to manage all of their healthcare records in one place.

This is a big step towards being able to offer every cancer patient access to their own registry records and supporting information. We aim to have the link to Patients Know Best in place by the end of 2015 and we look forward to being able to report back on progress.

Endoc(t)rinement – Documentaire de Stéphane Horel

La Magnitude du Problème des Perturbateurs Endocriniens

Sources
  • À Bruxelles, un compte à rebours a commencé. L’Europe pourrait interdire les perturbateurs endocriniens, ces substances omniprésentes qui compromettent la santé des enfants en piratant leur système hormonal. Mais cette promesse menace des intérêts colossaux. Les générations futures mandatent un bébé astucieux pour enquêter sur la bataille d’influence que se livrent industriels, scientifiques et ONG dans les coulisses de la démocratie européenne. Fruit de 18 mois d’enquête, Endoc(t)rinement expose la complaisance d’institutions européennes perméables à l’influence de l’industrie. Attaque de chercheurs indépendants, instrumentalisation de la science, conflit d’intérêts : le film dévoile les stratégies des lobbys de la chimie et des pesticides, empruntées à l’industrie du tabac, pour court-circuiter la réglementation.
  • Endoc(t)rinement, site de l’auteure.
  • Regardez cette liste de vidéos sur les perturbateurs endocriniens sur YouTube.

The Facts in the Case of Dr Andrew Wakefield

A fifteen page comics about the MMR Vaccination Controversy

A fifteen page comics about the MMR vaccination controversy.
Sources: Tall Guy Investigates, May 18th, 2010.

More information:

Live birth after transplantation using ovarian tissue from childhood

Live birth after autograft of ovarian tissue cryopreserved during childhood

childhood-memories
In a world first, a woman with ovarian failure has successfully given birth to a healthy baby after receiving transplantation of ovarian tissue from her childhood. Memories of Childhood image by Amy Dianna.

A patient whose right ovary was removed as a teenager, and whose left ovary subsequently failed, has become the first woman in the world to give live birth after doctors transplanted ovarian tissue that had been frozen in her youth. Medical professionals are calling this success an “important breakthrough” in fertility treatment.

2015 Study Abstract

Ovarian insufficiency is a major long-term adverse event, following the administration of a myeloablative conditioning regimen, and occurring in >80% of children and adolescents receiving such treatment for malignant or non-malignant disease. Cryopreservation of ovarian tissue is currently offered to preserve the fertility of these young patients. At least 35 live births have been reported after transplantation of cryopreserved ovarian tissue in adult patients, but the procedure remains unproven for ovarian tissue harvested at a prepubertal or pubertal age.

We report here the first live birth after autograft of cryopreserved ovarian tissue in a woman with primary ovarian failure after a myeloablative conditioning regimen as part of a hematopoietic stem cell transplantation performed for homozygous sickle-cell anemia at age 14 years. This first report of successful fertility restoration after the graft of ovarian tissue cryopreserved before menarche offers reassuring evidence for the feasibility of the procedure when performed during childhood.

Sources and more information
  • Live birth after autograft of ovarian tissue cryopreserved during childhood, Oxford Journals Medicine & Health Human Reproduction, doi: 10.1093/humrep/dev128, June 9, 2015.
  • Woman gives birth after transplantation using ovarian tissue from childhood, by Marie Ellis for Medical News Today, 10 June 2015.

Can Apple’s ResearchKit change the face of medical research?

With Apple’s ResearchKit, doctors can design apps that allow users to quickly, easily participate in medical studies

smartphone use image
The combination of widespread usage and the capacity to collect data makes smartphones an ideal tool for researchers to involve phone owners in taking a medical study. Image via Japanexperterna.se.

Everyry day, Medical News Today reports on a large number of studies. Many of these involve the recruitment of participants so researchers can obtain new and relevant data. The best of these studies will involve the participation of thousands of people, but getting hold of large numbers of willing volunteers can be difficult.

In March, Apple launched ResearchKit, an open source software framework for researchers and developers. What effect might this have on medical research?

  • Getting started
  • Lots and lots of data
  • An open source framework for all
  • Work in progress

Read Can Apple’s ResearchKit change the face of medical research?
by James McIntosh, Medical News Today, 11 June 2015.

Enquête de santé médicaments: ces ordonnances qui tuent

Envoyé Spécial, 09 juin 2015

Dans leur nouvelle enquête, Marina Carrère d’Encausse, Michel Cymes et Benoît Thevenet s’intéressent aux accidents dus aux médicaments. Effets secondaires, surdosages, mauvaises indications, interactions, le remède se révèle parfois pire que le mal…

Plus d’information
  • Après la diffusion du documentaire, les spécialistes invités sur le plateau – dont LeemFrance et Formindep – répondent aux questions des téléspectateurs, posées par sms, internet et via les réseaux sociaux.
  • Médicaments: ces ordonnances qui tuent, FRANCE 5, 9 JUIN 2015.
  • Enquête de santé : médicaments, ces ordonnances qui tuent, allodocteurs A REVOIR et se soigner 10/06/2015.
  • Regardez cette liste de vidéos sur l’industrie pharmaceutique sur notre chaîne YouTube.