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News from HCARDD

Health Care Access Research and Developmental Disabilities (HCARDD) is a research partnership between scientists, policy makers and service providers to evaluate the use of primary health care services by people with developmental disabilities (DD) in Ontario, Canada. Thus far, HCARDD identified a group of over 60,000 adults with DD in Ontario, which provides one of the largest samples in developmental disabilities research ever. Based on health care data available for this group, for example frequency of cancer screenings, number of hospital visits, or number of drugs prescribed, HCARDD will evaluate whether people with DD receive health care as outlined in the Canadian guidelines for primary care in DD.

This summer HCARDD researchers travelled to Halifax, Nova Scotia to present some of their first findings at the 14th World Congress of the International Association for the Scientific Study of Intellectual Disabilities (IASSID 2012). This newsletter offers some research highlights that were presented.

Interested in more news? Follow HCARDD on Twitter @HCARDD and receive updates on presentations, newsletters, and publications.

Dr. Yona Lunsky (Principal Investigator)

Health Care Utilization and Psychiatric Disorders in DD

Of the adults with DD in the HCARDD dataset, 45% also have a psychiatric disorder (dual diagnosis). This group requires extra medical attention, because they show a higher rate of chronic diseases such as heart failure and diabetes. Yet, little is known about their healthcare usage. Dr. Yona Lunsky and colleagues found that people with DD visit a physician or emergency department more often than other people. For people with both DD and a mental illness, visits to a doctor or emergency department were even more frequent. People with a serious mental illness and a developmental disability had the highest rates of chronic disease, primary care, and emergency care use. Current outpatient care may not be adequate to meet the complex health care needs of this group. HCARDD researchers recommend a closer look at the quality of health care in adults with DD and psychiatric disorders.

Cancer Screening in Women with DD

Surprisingly little research considers the unique health needs of women with DD. Using HCARDD health administrative datasets, Dr. Lunsky and colleagues compared cancer screening in women with and without DD in Ontario. This population-based study showed that women with DD are less likely to receive screenings for breast and cervical cancer than women without DD. These differences exist independently of income or location. HCARDD researchers will continue investigating the cause for inequities in preventative cancer care in women.

Changing Health Policy Through Research

People with DD have unique community-based primary health care needs compared with the general population. To assist health care providers and decision makers in improving care for this population, Dr. Hélène Ouellette-Kuntz and colleagues reviewed primary care and social care reform policy documents in four Canadian provinces: Nova Scotia, Québec,  Ontario and Manitoba. The researchers also identified eight initiatives in these provinces which they then evaluated against attributes  of community-based primary health care. As a first step towards strengthening the potential for research to influence policy and community-based primary health care practice, the researchers hosted a multi-province inter-sectoral meeting via videoconference. The activities described were supported by a CIHR planning grant. They were discussed with colleagues from around the world at the IASSID World Congress in Halifax. A final report is expected later in the year.

Drug Prescriptions in Adults with DD

People with DD are prescribed higher rates of medication than the general population because they often have multiple physical and mental health issues. A potential health risk exists when these prescriptions involve combinations of medications (polypharmacy) that have possible adverse  drug reactions. Based on a critical review of the existing literature, Dr. Virginie Cobigo offers the following recommendations for future studies of drug use in people with DD: 1) use a consistent definition of polypharmacy; 2) develop clinical guidelines about dangerous drug combinations; 3) study the relationship between drug use and other variables like gender or age; and 4) prioritize population-based studies (e.g. elderly). HCARDD will use the measurement of drug use as an indicator of quality of care for Ontarians with DD.

Primary Care of Adults with DD

Results from the HCARDD study show that adults with DD are less likely to receive an annual comprehensive health check than people without DD despite a higher rate of chronic conditions such as asthma, diabetes, congestive heart failure and COPD in this population. This type of population-based information is relevant for the evaluation of the Canadian consensus guidelines for primary care of adults with developmental disabilities.

The HCARDD data will also provide baseline information for future studies testing the effect of specific tools and training for physicians that were developed by the Developmental Disabilities Primary Care Initative (DD-PCI), a collaboration between the Ontario Ministries of Community and Social Services and Health and Long-Term Care and Surrey Place Centre. Preliminary results show an increase in physicians' use of primary care guidelines and assessment tools as well as an increased comfort level in working with patients with DD after the specific training.

MEET THE TEAM: co-investigators

The HCARDD Investigative Team is composed of a Core Working Group, supported by several co-investigators. The co-investigators bring expertise to HCARDD and advise the team on issues around policy, ethics, methods and the translation of research findings into primary care practice and policy.

Janet Barnsley (PhD) is an Associate Professor in the Department of Health Policy, Management, and Evaluation at the University of Toronto. She is an adjunct Scientist at ICES with extensive experience in performance indicators and primary care. Her research interests include measurement of health care performance, health service delivery, indicators of primary care, and interdisciplinary collaboration in primary care.

William Sullivan (MD, CCFP, PhD), physician and Associate Professor in Family and Community Medicine at the University of Toronto, directs the Developmental Disabilities Primary Care Initiative (DD-PCI) which aims to improve the primary care of people with DD through education of physicians. He provides clinical advice to the HCARDD team on matters related to the primary care of adults with DD, and issues related to research ethics and confidentiality.

Liisa Jaakkimainen (BSc, MSc, MD, CCFP) is an Associate Professor and Clinician Scientist at the Department of Family and Community Medicine, University of Toronto. Her research focus is on primary care access and utilization as well as evaluation of health care services. She holds expertise in using electronic medical records for the evaluation of primary care practice. For HCARDD, she provided measures of primary care performance.

Mike O'Shea is a Senior Officer with the North East LHIN (Local Health Integration Network) where he has been the lead for mental health and addictions for the last 5 years. He has worked in the human services field for more than 30 years and was previously employed at the Addiction Research Foundation of Ontario (CAMH). He is a member of the HCARDD knowledge translation committee and communicates the HCARDD research findings to all LHINs in Ontario.
Katherine Barry (MA, MPA) is a Senior Program Consultant with the Ministry of Health and Long Term Care. She has extensive experience in planning, developing and implementing health care policies and programs in line with government policy. She collaborates with the HCARDD team on the translation of research findings into primary care policy initiatives.