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H-CARDD news

Dr. Yona Lunsky (PI)

By Dr. Yona Lunsky (PI): H-CARDD established one of the largest datasets on healthcare provided to persons with developmental disabilities (66,000 adults) in the world. During the first three years of the H-CARDD program (2010-2012) we assessed the delivery of primary care to adults with developmental disabilities in Ontario using some of the benchmarks established in the Canadian Consensus Primary Care Guidelines. Some critical gaps in service provision were identified. Two publications on the research findings are discussed in this newsletter.

New funding for H-CARDD: Implementing research findings into practice

This Spring (2013) the Ontario Ministry of Health and Long-Term Care awarded H-CARDD 1.8 million dollars from the Health System Research Fund (HSRF). With this new funding H-CARDD will investigate healthcare in four vulnerable subgroups of people with developmental disability: aging adults, women, adults with mental health problems, and youth transitioning into adult services.

This grant  will also include two studies on the implementation of best practices in healthcare for adults with developmental disabilities, one in emergency departments and one in primary care. A portion of the grant is set aside for H-CARDD to respond to Applied Health Research Questions (AHRQs) that can be posed by Knowledge Users.

For further information about the H-CARDD Program and the AHRQs please contact Julie Klein-Geltink, H-CARDD program manager, at julie.kleingeltink@camh.ca

New H-CARDD program manager: Julie Klein-Geltink

Julie holds a Masters of Health Science degree in Community Health & Epidemiology from the University of Toronto. She has 10 years of experience as an epidemiologist and research program manager in a variety of settings including the Public Health Agency of Canada, the Institute for Clinical Evaluative Sciences and most recently, the Canadian Partnership Against Cancer. Julie’s experience with health services research using administrative databases is rich and deep and spans a range of populations including adult and pediatric cancer patients, First Nations, Inuit & Metis, and adults with developmental disability and a psychiatric disorder. In addition, a  major focus throughout her career has been on the identification and application of best practices in research project management. Welcome, Julie!

Research to knowledge users; Interviews with a policy maker and a physician-scientist

Knowledge translation is a key element of the H-CARDD program and we were interested in knowing how different knowledge users viewed two recently published papers. Using questions developed by the Evidence Exchange Network at the Centre for Addiction and Mental Health (CAMH), each participant was interviewed about one H-CARDD publication by Ms. Dale Butterill, H-CARDD’s knowledge broker.

Dale has a Masters in Social Work from Simmons College, Boston and a Masters in Public Administration from Queens University. Dale’s career in mental health has spanned community mental health, acute/tertiary hospital-based clinical and administrative work, consulting, and for the last fifteen years, knowledge translation. While working in the former Health Systems Research and Consulting Unit, CAMH, under Dr. Paula Goering she was the first knowledge broker in Canada and developed the structure for the Ontario Mental Health and Addictions Knowledge Exchange Network, now EE-NET. She currently works as an independent knowledge translation specialist.

1. using health administrative data

 Dale Butterill spoke with Monica Neitzert, policy manager at the Ontario Ministry of Community and Social Services, about the article “Using health administrative data to identify individuals with intellectual and developmental disabilities: a comparison of algorithms.” (click here for full article).

Brief synopsis of the article
The study compared three different strategies to estimate the number of people with intellectual and developmental disabilities in Ontario based on information from health administrative data. The number of people identified with developmental disabilities differed per strategy. This information is important for planning health care for people with developmental disabilities.

What did you find important in this article?
I am surprised at the magnitude of the impact that different search strategies have on the estimated proportions of people with various clinical and demographic characteristics. For example, I did not realize that the percentage of people with a developmentally disabilty and a psychiatric disorder (dual diagnosis) would vary so much depending on the search strategy used. Also, I find it interesting that we see a clear effect of age on prevalence rates in all three groups.

How will you use the information from this study in your work?
Given that the proportion of individuals with a dual diagnosis appears significantly higher than has been reported elsewhere in the literature speaks to the  need to be planning services to meet the specialized needs of this group. Secondly, I think we need to continue to monitor new research results about the age-related patterns in prevalence rates in order to understand what causes these differences. Again, a better understanding of these differences will help us plan more appropriate services for people with developmental disabilities.

Do you foresee any challenges using this information in your work?
I don’t foresee a challenge, but it will take some time to communicate the importance of this information to the people who can actually bring about change (i.e., senior decision makers and service providers).

How do the findings of this study relate to what you already knew or thought?
The prevalence rate seems higher in younger age groups. This difference resonated with me greatly. In my experience, I see fewer and fewer people with Down syndrome and more people with Autism. It makes me think that prenatal testing may be leading people to end pregnancies more frequently when they learn that there is a high risk of Down syndrome for their child.

 How is this research relevant to you personally?
I have a brother with Down syndrome. I believe that the world benefits greatly from the presence of people with developmental disabilities, including Down syndrome, even if we do not quite understand this yet. We need to make the world a more welcoming place for all people with developmental disabilities, and come to understand their place and their importance.

Do you have any questions or comments to the authors of this article?
We always see more men with developmental disabilities. Is it possible that there is a bias against diagnosing women? Is there any age-related pattern for this?

Any other thoughts or comments you would like to share?
Please continue your research and your knowledge translation.

Ask the researcher!

Do you want to know more about this study?

Email your comments or questions to Dr. Elizabeth Lin at HCARDD@surreyplace.on.ca

2. cancer screening in women with developmental disabilities

The second interview took place with Dr. Liisa Jaakimainen, family physician and health services researcher, about the article “Are cervical and breast cancer screening programmes equitable? The case of women with intellectual and developmental disabilities.” (click here for full article).

Brief synopsis of the article
Cancer screening programs are available in Canada for all eligible women. This study investigates screening rates for cervical and breast cancer in women with developmental disabilities compared to women in the general population. The results show that the proportion of women with developmental disabilities who are not screened for cervical cancer is nearly twice what it is in women without developmental disabilities, and 1.5 times for breast cancer screening.

What did you find important in this article?
From a clinical perspective the results of this study show that we are not screening women with intellectual disabilities as well as we might for breast and cervical cancer.  It does not surprise me that women with developmental disabilities who have multiple health problems receive less screening because clinicians focus less on preventative health care and screening when they see patients with complex health issues. What does come as a surprise from a research perspective is that healthy women with developmental disabilities are less likely to receive cancer screening than healthy women without developmental disabilities.

How will you use the information from this study in your work?
As a family doctor, the research makes me more aware of the importance of presenting the available screening options to women with developmental disabilities and of preventative health care for this population in general. As a researcher, when studying primary health care performance, I usually take socio-economic status and the presence of multiple health issues into consideration. Perhaps I should take developmental disabilities into account as well.

Do you foresee any challenges using this information in your work?
Finding the right strategy to increase the uptake of cancer screening in women with developmental disabilities will be a challenge. I believe physicians will need to collaborate with health care providers from other disciplines to better reach this specific group of patients.  For example, I work closely with a nurse who does most of the Pap tests for cervical cancer in my practice. Improvements may involve changes in clinical programs or in the approaches we use for women with developmental disabilities, such as, implementing alerts for breast cancer screening.

How do the findings of this study relate to what you already knew or thought?
The results of this study are a reminder to physicians that this subgroup of patients is being under-served. The large data base from which the findings are drawn and the population health perspective add to the credibility of the numbers. Although I expected some differences in screening uptake, looking at the results of this study, I was surprised by the degree of inequality in access to cancer screening.

Do you have any questions or comments to the authors of this article?
What strategies would you recommend to increase the uptake of preventative cancer screening in women with developmental disabilities?

Ask the researcher!

Do you want to know more about this study?

Email your comments or question to Dr. Virginie Cobigo at HCARDD@surreyplace.on.ca

H-CARDD presentations

Recently, H-CARDD researchers presented at:

The Annual Conference of the Canadian Association for Health Services and Policy Research, May 28-31, Vancouver, BC.

The 137th Annual Meeting of the American Association on Intellectual and Developmental Disabilities, June 3-6, 2013, Pittsburgh, PA.

This Fall H-CARDD will present at:

The second Health and Wellbeing in Developmental Disabilities Conference, November 12-13, 2013, Toronto, ON.