Study reveals insight into patients
living with complex chronic disease

September 18, 2012 9:28 am Views: 870
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Dr. Kerry Kuluski, a Research Scientist with The Bridgepoint Collaboratory for Research and Innovation, presenting findings from 'The Bridgepoint Study' earlier this year.

The release of ‘The Bridgepoint Study’ – based on extensive interviews with patients at Bridgepoint Health, a complex continuing care and rehabilitation hospital east of downtown Toronto – is a bold first step towards a better understanding of patients with chronic disease. The report, which is the first of its kind, offers a snapshot from the patient perspective of the challenges of living with complex chronic disease.

“This group remains one of the most poorly understood patient populations,” explains Dr. Kerry Kuluski, Research Scientist with the Bridgepoint Collaboratory for Research and Innovation, and study investigator. “This study is important because it provides an opportunity to link the patient voice with appropriate health policy.”

Patients at Bridgepoint Health face a myriad of conditions, ranging from hip and knee replacements to end-stage renal disease. The Bridgepoint Study examined the histories, characteristics, needs and experiences of Bridgepoint Health patients living with complex chronic disease, who typically come to Bridgepoint for additional rehabilitation following a stay at an acute care hospital. Because this particular patient population is typically excluded from research due to their complexity, results from The Bridgepoint Study provide critical information to those in Canada’s health care community.

Some of the study’s findings include:

–    Health services for patients with complex chronic disease requires a different model of care than the acute model, characterized by providers who are given the capacity (i.e., the tools) to respond to changing, fluctuating health problems of patients, and meet the physical, social and mental health needs of those they serve.
–    Many patients with complex chronic disease experience mental health challenges including depressive symptomology, stress and anxiety.
–    Transitions are problematic: Greater support and expectation management is required at both admission and discharge. Appropriate linkages to other points of care is required at discharge and should be better established.
–    This patient population spans all ages, is extremely diverse, and is characterized by a mix of health problems, symptoms and illness histories.

Local research points to global implications

Chronic disease accounts for a reported 60 per cent of the global disease burden. The economic burden of chronic disease in Ontario is estimated to be 55 per cent of total health care costs. But according to researchers at the Bridgepoint Collaboratory for Research and Innovation, much more research is needed to align health policy with the realities of living with complex chronic disease.

“Many of these individuals have been dealing with their health problems for a long time and could continue to experience health issues for many years to come,” explains Dr. Kuluski.  Patient-Centred care is key. It is important to pin-point the barriers and work toward building a context and a tool-kit for complex care.”

After sharing results of the findings to Bridgepoint Health staff in the spring, Dr. Kuluski has continued talking about patients with complex chronic conditions to audiences, most recently in Montreal and London, England. The Bridgepoint Collaboratory for Research and Innovation believes their research will change the way Canadians understand patients with complex chronic disease.

“The study results may be used to inform new approaches to clinical care, improved linkages with other health and social service providers, new frameworks for health services delivery and changes at the level of health policies,” says Michael Wasdell, the Collaboratory’s Managing Director.  “It has set the stage for an important area of research.”

Findings from The Bridgepoint Study are currently being used to refine existing measurement tools and the model of care at Bridgepoint Health.

Dr. Kuluski’s research is supported by The Great-West Life, London Life, Canada Life New Scientist Fund. The Bridgepoint Collaboratory for Research and Innovation is led by Dr. Renée Lyons, Bridgepoint Chair in Complex Chronic Disease Research and TD Scientific Director

For more information on The Bridgepoint Study visit www.bridgepointhealth.ca/bpstudy

Article By:

Dayo Kefentse

Dayo Kefentse is Bridgepoint Health’s Communications and Public Affairs Advisor.

2 Comments

  • Steve Spurling

    I have hypoagammaglobulinemia,bronchiectasis,pulmonary fibrosis,depression,and many other ailments related to the hypo immune disorder.Nice to see an aknowledgement of fact chronic problems bring stress and anxiety and depression which can add to lphysical problems.Problems to financially with no xtra funds for dietary supplemnts or vitamins.Im on CPP disability with no prescription coverage

  • The study needs to be applauded as a huge step forward. The interaction of multiple ailments contributes to the uniqueness of each case. From a patient’s perspective this means holistic medicine is really important. Specifically, really listening to what is expressed by the patient as causing the most grief,instead of assuming individual problems can simply be checked off a list. This may seem obvious buy is I think critical. As one wise doctor told me, just because “there is nothing we can do for you” does not mean we should not try to help”. I feel sad that in our efforts to teach young physicians to trust their deciscion making, we have neglected to teach them to listen carefully to what is being expressed at many levels. Each patients experience is of course unique and so physicians must also be willing to learn from them. The macro nutrients in food respond very differently depending on what they are paired with. I suspect the same is true when chronic illness or different ailments interact. I am glad to see progress. Thank you!

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