Status of Women Committee on Feb. 5th, 2014

[Wai Young, Conservative, Vancouver South, BC]

Thank you.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much. I think your testimony was very much appreciated by all members of the committee. I want to convey my heartfelt thanks for your time, Mrs. Bear. It was very informative.

We will suspend for a few minutes, so we can arrange for the next video conference.

[The Chair, NDP, Hélène LeBlanc]

We are resuming the meeting. We will hear from two people who will testify by videoconference.

We have Dr. April Elliott, who is a pediatrician and the chief of adolescent medicine at Alberta Children's Hospital. Thank you very much for being with us.

We also have Dr. Debra Katzman, a professor of pediatrics in the division of adolescent medicine in the department of pediatrics at the University of Toronto.

Welcome to you both. You each have 10 minutes. We'll start with Dr. Elliott.

[Dr. April S. Elliott, Paediatrician, Chief of Adolescent Medicine, Alberta Children's Hospital, Calgary Eating Disorder Program]

I'd like to thank the committee for conducting its study of eating disorders among girls and women and viewing this as an important health concern in Canada. I'd like to add that eating disorders also affect males, albeit in smaller numbers. Currently, I'm actively seeing four young men struggling with both the disease and a system that they don't fit into.

I'm a pediatrician with a fellowship in adolescent medicine. I've worked in the area of eating disorders for about 14 years. I see patient population generally between the ages of 11 and 23, but unfortunately, I have seen several young people more recently as young as 7.

I reviewed the transcripts of Dr. Blake Woodside. I'm aware he reviewed extensively the epidemiology, including the incidence, prevalence, and characteristics of eating disorders, as well as the statistics of those who die from eating disorders, so I won't repeat this information today.

I want to re-emphasize, though, that the cause of eating disorders is not fully understood. However, for many years socio-cultural influences and environmental risk factors have been thought to be important.

As the research on this subject has progressed, there are now indications that the development of an eating disorder is multifactorial, with socio-cultural, biologic, and genetic influences. Research in the neurobiology of eating disorders has revealed genetic links. Overall, anorexia nervosa and bulimia nervosa appear to be far more common among the biological relatives of anorexic and bulimic probands than in the general population. Eating disorders can be pathological solutions to a developmental challenge, especially in children. Research also suggests that an obsessional, perfectionistic, and anxious personality style may be premorbid traits that contribute to the development of eating disorders.

I ask, then, what are we doing in our schools and early intervention prevention programs to help children learn to self-regulate and learn mindfulness techniques to counter these traits and pressures? The severity of a medical problem associated with eating disorders is significant and should not be underestimated however the patient appears outwardly.

Mortality in anorexia nervosa is the highest of any psychiatric illness. It is the third most common chronic illness among adolescent girls. The medical complications of both bulimia nervosa and anorexia nervosa are multi-system and can have both acute life-threatening and long-term sequelae.

It is again important to note that individuals at normal or above normal body weight who lose an excessive amount of weight may show similar changes in medical status as the individual who starts at a normal body weight. I bring this up as a story related to me by patients many times who are suffering with bulimia nervosa. Their general practitioner looks at them and says they don't look like they have an eating disorder, while potentially these average or possibly overweight individuals may have a serious electrolyte issue that is caused by repetitive bingeing and purging activity.

The primary pathophysiologic response to extensive weight loss is one of metabolism reduction as a physiological adaptation, as we have seen in a very classic study done in...[Technical difficulty—Editor]...Minnesota experiment.

I am a medical consultant at the Calgary Eating Disorder Program. The Calgary Eating Disorder Program uses a multimodal, interdisciplinary team approach to provide service across a continuum of care. We believe it is imperative to work collaboratively as a team and include the patient and the family in this process. In this respect, we strive to have the patient and family in control of their own treatment and give choices and options within the boundaries of responsible care. We utilize a biopsychosocial approach to treatment, including all the necessary team members, to meet the needs of the patient and family. We also work very hard to build community capacity.

I will give you some statistics of our program.

Since 2009 we have gone from 276 referrals a year to, presently, in the 2012-13 fiscal year, 437.

Our diagnoses tend to be divided...[Technical difficulty—Editor]...eating disorder not otherwise specified at about 42%, anorexia nervosa at about 29.4%, and bulimia nervosa at about 22%. A very small percentage is very young patients with an early onset eating disorder.

The age range over the last five years has stayed consistent between the majority being between 18 and 24 years of age and the next large age group being between 14 to 17 years of age.

Our program is a tertiary centre, but I recognize that family physicians are the cornerstone of health care. Their knowledge and ability to screen, support and refer these individuals is essential.

I've always endeavoured to provide continuing medical education for family physicians as this is where we make the most difference in screening, prevention, and promotion. Without a bold standard approach, these physicians often feel at a loss.

There is very little funding to support these types of educational presentations outside of a formal conference. I suggest funding to create a web-based CME program with formal credits, and increasing curriculum in medical schools.

Even in the last 15 years I've watched eating disorder treatment in Calgary go from an orphaned, non-humanistic approach if no one was trained or willing to treat the eating disorders, to some very organized and evidence-based programs.

Generally, I feel we have excellent resources in Alberta, with the exception of a few critical aspects that could both decrease morbidity and mortality. This may be generalized across Canada, but again, there is such a variation in funding and programs.

Number one, there are no specific in-patient eating disorder units for under 14-year-olds or other long-term intensive care. Often, there is nowhere to admit if they are already medically stable, but underweight and failing to thrive. This has significant impact on future growth and development, and other psychiatric comorbidities and chronicity of the illness.

We do not have adequate spaced, very well organized, multidisciplinary in-patients units. The conditions are very concerning. We have six patients in a four-bed room at the Foothills hospital. Often, additional patients are placed in rooms with elderly sick medical patients, often with dementia, and the space for the critical meal support and therapy is a mere 150 square feet. Patients sometimes leave against medical advice because the conditions are so bad and they are ambivalent about getting better.

I will close with a relevant example of a patient I just saw on Monday, ironically, just after I received the invitation to give my testimony.

This is a 19-year-old woman with anorexia nervosa and a BMI of 16, which is far below the third percentile for someone her age. She's medically unstable with a low resting heart rate and dehydration, and she's becoming more cognitively impaired every day. She requires hospitalization, but our allotted beds are over capacity, eight people for an allotted six. The room in which they participate, as I mentioned, is a mere 150 square feet.

I have nowhere to admit this patient who, by the way, wants to be admitted and supported. Therefore, I continue to do intensive out-patient clinic visits biweekly and prepare her for our day program that is more resourced, but is not the best option for her medically at this time.

Her mother's response, through tears, during the appointment, “I'm at a loss of what to do. My daughter has lost so much weight and now hasn't eaten for four days. She is my only priority, and to the program and to the medical resources just a number; hopefully, not a statistic of mortality to be looked upon in 10 years.”

I obviously comforted her and reassured her that she wasn't a number to me and that I would do everything in my advocacy powers to get her the treatment she needed. Unfortunately, this is not a unique presentation in the over-18 population. Hopefully, we can continue to examine the roadblocks and allocation of resources to assure these young women and men, with so much potential, get the adequate care they need to achieve optimum health and well-being.

Thank you.

[The Chair, NDP, Hélène LeBlanc]

Dr. Elliott, thank you very much for this very good testimony. It was also very touching.

Mrs. Katzman, for 10 minutes.

[Dr. Debra Katzman, Professor of Paediatrics, Division of Adolescent Medicine, Department of Paediatrics, University of Toronto]

Good afternoon. I would like to thank the members of the House of Commons Standing Committee on the Status of Women for inviting me to speak with you today about girls and women with eating disorders.

My name is Dr. Debra Katzman. I am a professor of pediatrics and an adolescent medicine specialist at the Hospital for Sick Children, University of Toronto. I have worked in the field of eating disorders for the past 28 years. I founded the pediatric eating disorder program at the Hospital for Sick Children and was the medical director for 22 years. My research has focused on young girls with eating disorders, specifically the medical complications of these devastating disorders. I have also been involved in research on early diagnosis in children and adolescents and treatment of these life-threatening disorders.

I have played an educational and advocacy role in eating disorders on a national and international level as a member of the steering committee of the Ontario Community Outreach Program for Eating Disorders, the past president of an international organization, the Academy for Eating Disorders, and now as the current president of the Society for Adolescent Health and Medicine. As you can see, I am passionate about pediatric eating disorders and what we, as health professionals, researchers, and Canadian citizens can do to prevent, identify, and treat these disorders.

I have the daily privilege of working with and caring for very, very sick children and adolescents, and their families, who suffer from the severest forms of eating disorders. Eating disorders, as Dr. Elliott so eloquently said, are biologically based, serious, life-threatening mental illnesses. These disorders warrant the same level of breadth of awareness, identification, treatment, prevention, and research funding as other illnesses. Let me explain to you what I mean by this.

Since I started my medical career some 30 years ago, biomedical research has had an impact on pediatric illnesses and has made some incredible advances on the outcomes of many serious diseases. When I was a medical student, acute lymphoblastic leukemia, the most common cancer of childhood, had a mortality rate of 95%. Today the mortality rate has been reduced by 85%. Six thousand children each year who would have previously died of this disease are now cured.

Another example of important scientific advances is the HIV/AIDS story. For example, a 17-year-old infected boy with HIV 20 years ago would have lived months, only months, and now can live up to 60 or 70 years.

These remarkable changes are due to funded scientific research that has focused on understanding these very tragic major killers. Unfortunately, these types of success stories are not the same when we're talking about eating disorders.

Over the past 20 years we have indeed made some headway with eating disorders, but not to the same extent as what we've seen with cancer, heart disease, or AIDS. Let me share with you, however, what we do know about eating disorders.

Eating disorders are a huge public health issue. Eating disorders are on the rise in children. We've done a study here at Sick Kids, in collaboration with the Canadian pediatric surveillance program, and showed that young people as young as five years of age develop eating disorders. Eating disorders have a relatively high prevalence rate. Approximately 1.5% of women between the ages of 15 to 24 years old suffer from an eating disorder. That means an estimated 525,000 Canadian women will suffer from these disorders. Compare this to 10,000 children and youth living with cancer or 25,000 living with type 1 and type 2 diabetes. Yet, eating disorders do not get the same research funding, nor do they get the same general attention.

Eating disorders start early in life. There are two peak ages of onset, one at 14 years of age and one at 18 years of age. This is very different from other illnesses, such as heart disease and hypertension, that start in adulthood. Most children and adults with eating disorders are girls and women.

Anorexia nervosa is the third most common chronic illness affecting adolescent females. Eating disorders know no bounds when it comes to race, colour, gender, and socio-economic status. No one is immune to an eating disorder.

The cause of eating disorders is, as Dr. Elliott has said, multifactorial, and includes a combination of genetic, biological, and temperamental vulnerabilities that interact with a very toxic environment.

Eating disorders are associated with impairment in emotional and cognitive functioning. We know that girls and women with eating disorders exhibit difficulties with cognitive functioning, specifically, difficulties in their ability to judge things and difficulties with their memory, decision-making ability, and sort of getting the gist of the bigger picture of things.

Studies from our group here at SickKids have shown that young women have pronounced cognitive deficits during the acute phase of the illness that significantly interfere with their cognitive abilities and their ability to make relationships. This type of cognitive impairment is thought to compromise a young woman's ability to engage in psychological treatment, making treatment much less effective. Further, it is unclear whether these cognitive deficits actually return to normal.

We also know that girls and young women have significant comorbid psychiatric problems. The most common comorbid psychiatric conditions in anorexia nervosa include major depression and anxiety disorders. Commonly, comorbid conditions in bulimia nervosa include anxiety disorders, major depression, and substance use disorders. Approximately 80% of individuals with anorexia nervosa and bulimia nervosa are diagnosed with another psychiatric disorder at some time in their life.

Eating disorders limit the life activities of young girls and women suffering from these conditions. Individuals with anorexia and bulimia nervosa rate their quality of life as very low. Social adjustments tend to be impaired; social communication skills are poor; and social networks tend to be very small.

Vocational and educational functioning in individuals with eating disorders is below that expected, with absences from work and from school. In one study, it was shown that girls who suffer from eating disorders spend approximately five and a half months per year in school over a two-year period.

Eating disorders are life-threatening illnesses and are associated with numerous medical complications. Eating disorders have the highest rate of medical complications of any psychiatric disorder.

Eating disorders affect every system in the body. The medical complications represent significant forms of disability. Medical complications include: significant impairment of normal adolescent physical, social, and psychological growth and development; cardiac abnormalities; gastrointestinal problems; and osteoporosis. In fact, our group did the first study in this area and found that young people with anorexia nervosa who only had the illness for three months developed brittle bones, or osteoporosis. In addition to this, these young people also, as I've mentioned, have cognitive impairment. We have shown in studies that they also have changes in the structure of their brain.

These are but a few of the medical complications. Also, from the research we have done, it is not clear that these long-term medical complications are reversible.

These medical complications can and do lead to death in some cases. Death rates for anorexia nervosa are the highest of any psychiatric disorder and are 12 times higher than the annual death rate from all causes in females between the ages of 15 and 24 years. Children with the disorder are 10 times more likely to die than their healthy peers. This inexcusable increased risk of death in eating disorders is frequently due to the numerous medical complications and also to suicide.

Overall, eating disorders are associated with some of the highest levels of medical and social disability of any psychiatric disorder. These conditions carry significant costs to the individuals, to their families, and to society at large.

There is a large cost to eating disorders in young women who suffer from them. Girls and women with anorexia nervosa have higher rates of pregnancy complications than women without eating disorders; they have higher rates of infertility and of spontaneous abortions; and their children seem to have a higher prevalence of emotional and nutritional problems. Parents and carers of individuals with anorexia nervosa and bulimia nervosa have high levels of psychological distress.

Finally, eating disorders result in a significant economic burden and health service use. A recent study on hospital admissions from adult psychiatric illness in England found that eating disorders contributed the highest proportion of admissions of all psychiatric disorders. Most child and adolescent psychiatric beds are occupied by young people with eating disorders, more than any other diagnostic group. In the U.S., individuals with eating disorders have a higher health care utilization rate than individuals with other forms of mental illness.

We have just completed a study—

[The Chair, NDP, Hélène LeBlanc]

Dr. Katzman, we'd like to start the questions from the members. Maybe you could complete your statement afterwards in an answer.

[Dr. Debra Katzman]

Certainly.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much for your testimony, Dr. Katzman.

We start with Ms. Crockatt, for seven minutes.

[Joan Crockatt, Conservative, Calgary Centre, AB]

Thank you both for being here.

Hi, April. This is Joan Crockatt. How are you?

[Dr. April S. Elliott]

Hi. I'm good. How are you?

[Joan Crockatt, Conservative, Calgary Centre, AB]

I have to say that I know Dr. Elliott from Calgary and have been familiar with her work for quite some time.

Hello, Dr. Katzman. Thanks for being here.

[Dr. Debra Katzman]

It's a pleasure.

[Joan Crockatt, Conservative, Calgary Centre, AB]

Dr. Elliott, let me start with you.

First of all, I want to thank you very much for the testimony. It's obvious that you've taken a very forward-thinking, solution-oriented approach. I believe you have pioneered the program for eating disorders at the children's hospital in Calgary.

Could you start by telling us how you designed that program from the beginning? Did you have to reinvent the wheel? Is there a bit of a centre of excellence developing, and at what point is it right now?

[Dr. April S. Elliott]

We started out under the department of psychiatry. They came, when I was doing my fellowship with Dr. Katzman at SickKids, to view various programs to determine the best model.

The uniqueness of the Calgary eating disorder program is that we see all ages, and so we had to develop a program that went initially all the way from as young as seven years old, unfortunately, to 24 years of age. Over the last eight years, we've been seeing all ages. You can imagine the complexity of trying to have a program that reaches all ages.

As a pediatrician joining the team about two months into the initial program while it was continuing to develop, I had a concern around the developmental appropriateness of mixing all ages. They then decided to have the programming for those ages 14 and up. What then happened was that we missed the under-14 population for intense programming.

It took a lot of years and a lot of showing of the evidence base for family-based treatment, as well as other approaches, such as the multi-family from Eisler in England, to convince them that it was really important to have specialized programming for the under-14 group and for many of the adolescents.

It has been a work in progress. There has been an amazing partnership and collaboration between the department of psychiatry and the department of pediatrics. Now that we have the evidence for some of the family-based programs we do for the younger groups and also for some of the other work that we're doing with adults, I think we are developing a centre of excellence.

[Joan Crockatt, Conservative, Calgary Centre, AB]

Forgive me if I go into more depth with this. We've had a good overview from some of our witnesses, and now I'd like to move into this area of best practices so that we can capture what your and Dr. Katzman's experience has been in that regard.

If you can start from the top, what would you say are the top things you have observed over your 14 years that you feel are best practices we should definitely be capturing in this study in order to move forward?

[Dr. April S. Elliott]

With regard to the under-18 population, and Dr. Katzman can comment on this as well, I believe that Lock and Le Grange have done some amazing work in their manualization of family-based treatments. The evidence is there that they're effective. We're trying to use that, as well as some of the multi-family groups that also have evidence of efficacy. That's in the younger population.

In the older population, as you've seen in our study that we did looking at Canadian eating disorder programs, there's such a variation, but the evidence points more to.... In our program we're using both a motivational...moving more to dialectical behaviour therapy, because we do see a large proportion of population having problems with borderline personality and some of these other things. That's where we're moving in our program.

The new director of our program is Dr. Monique Jericho. She has been excellent in getting the program very evidence based. Those are some of the examples we're using.

[Joan Crockatt, Conservative, Calgary Centre, AB]

I'll ask you the same question in just one moment, Dr. Katzman, but I wanted to bring up something that Dr. Woodside raised with us. I'm wondering if you have seen the same thing or something different. He said that 60% of the cases he dealt with were PTSD, most revolving around some kind of sexual abuse. I'm wondering if that's unique to his program or if that's something that you're seeing.

I know you mentioned genetics as part of causality, but are you also seeing some sort of trauma in that regard as being a cause?

First Dr. Elliott, and then Dr. Katzman. Thanks.

[Dr. April S. Elliott]

I don't know whether it's as high as 60%. I know that in the under-18s it's in a much smaller proportion. In the older population we see a lot of comorbid history of abuse and post-traumatic stress. A lot of our patients really benefit from dialectical behavioural therapy, as well as a unique treatment that some of our therapists use, EMDR, which is very effective in post-traumatic stress.

I don't know the exact percentage in our program, but I would say it was probably at least 40% to 50%.

[Joan Crockatt, Conservative, Calgary Centre, AB]

Dr. Katzman, perhaps you could go back to the best practices, either what are best practices that you want to highlight here, or how we make sure that we share them, given that health care is a provincial responsibility, either of those two areas that you want to address.

[Dr. Debra Katzman]

There are a number of best practices that I would really like to highlight. The first is that we need to educate pediatricians, family physicians, and those on the ground running who see young people, young children, adolescents, and women to identify these illnesses as soon as possible.

Part of good practice in the primary care setting is to make sure that you screen for these illnesses, and for children and adolescents, to make sure that pediatricians and family physicians alike are keeping growth curves so that they can identify young people when they fall off those growth curves. I would say that is a best practice.

The other thing I would add to what April said is that family-based therapy is really the first-line therapy for adolescents and children with eating disorders. This is an out-patient therapy. Although we have in-patient wards, and we need in-patient wards for the sickest of the sick, the goal would be to admit kids, get them medically stable, and then discharge them from hospital as soon as we possibly can and begin to engage them in the only evidence-based treatment we have, and that is the Maudsley or family-based therapy.

We know that these treatments are good, and I say “good” because they're not excellent. They're good. We know that 75% of young people recover using this treatment, but there is 25% of young people who do not recover as a result of this kind of treatment and need something more and different.

[The Chair, NDP, Hélène LeBlanc]

I'm sorry to interrupt, but we have more to come.

Thank you very much, Dr. Katzman.

[Joan Crockatt, Conservative, Calgary Centre, AB]

Thank you so much for your testimony.

[The Chair, NDP, Hélène LeBlanc]

Mrs. Hughes, for seven minutes.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Dr. Elliott and Dr. Katzman, thank you very much for your presentations.

The question that I had drafted basically talked about research. I know you've indicated there was a need for funding for research, and there was a need for increasing the curriculum in medical school. Both of you have touched on that.

I'm going to be sharing my time with Mr. Harris.

Can you hear the simultaneous interpretation?