The Bridgepoint Study:
Understanding Complex Patients
and their Health Care Needs.
20 October 2011, Health Systems Performance Research Network
Speaker Series, University of Toronto
Renée Lyons, PhD
Bridgepoint Chair in Complex Chronic Disease Research, Bridgepoint Health
Professor, Dalla Lana School of Public Health
University of Toronto
Kerry Kuluski, PhD
Research Scientist, Bridgepoint Health
Assistant Professor (Status), Department of Health Policy, Management and Evaluation,
University of Toronto
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Complex Chronic Disease
What is Complexity?
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Diagnosis +…
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Functional impairment
Symptom management
Polypharmacy
Challenges in applying clinical practice guidelines
Depression and mental illness
Coping and adaptation
Social exclusion and relationship strain
Poverty, socioeconomic vulnerability
Difficulty navigating the healthcare system
Heavy utilization
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The Burden of Complex
Chronic Disease (globally and nationally)
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Life expectancies have increased by 30 – 40 years in the last
century (WHO,2005), with a corresponding increase in chronic disease
(CD).
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CD accounts for 60% of global disease burden (World Health
Organization, 2005).
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In Canada, acute care hospitalizations are decreasing but length of
stay increasing due to the admission of more complex cases (CIHI,
2010).
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Seniors with multiple chronic conditions use 3x more health services
than seniors with no chronic conditions (CIHI, 2011).
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The Burden of Complex
Chronic Disease (provincially)
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One in three Ontarians is affected by chronic disease (CD).
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80% of the Ontario population aged above 65 has at least one
chronic disease, while approximately 70 percent suffer from two or
more.
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25% of Ontarians admit it’s difficult to lead a healthy life and make
healthy choices.
http://www.ipsos-na.com/news-polls/pressrelease.aspx?id=5236
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The economic burden of CD in Ontario alone is estimated to be
55% of total health costs (OMA, 2010).
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What is Complex
Continuing Care?
Also known as extended care, chronic care or complex continuing
care:
• Comprises 1/3 of Ontario’s hospital beds
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provides ongoing professional services to a diverse population with
complex health needs.
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may be free-standing or co-located with acute and/or rehabilitation
services within one hospital
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serves individuals who may not be ready for discharge from hospital
but who no longer need acute care services.” (CIHI)
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What is Complex
Continuing Care?
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Emphasis has evolved from indefinite setting to a temporary setting
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More resource intensive than facility based long-term care
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Legislation sets no specifics as to what type of care these facilities
are to offer, and most set their own admission criteria.
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As indicated in policy reports (e.g., including OHA and recent Walker
report) ascertaining ways in which the role of CCC can be optimized
to relieve strain in hospital and LTC sectors is needed
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Bridgepoint Health
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Bridgepoint Health
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Bridgepoint Hospital
• Publicly funded
• In-patient care
• Ambulatory and day services – 20,000 visits
• 479 beds: 367 complex & 112 rehabilitation
• 1,200 employees
• 400 volunteers
• Ethnically diverse
• Health disparities
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Bridgepoint Health
Key Strategic Outcomes
• Reduce the burden of
complex chronic disease
• Improve the quality of life
and improve wellness for
individuals living with
chronic disease
• Create, share and
disseminate new
knowledge
• Drive societal and health
system change
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Bridgepoint Hospital
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Bridgepoint Hospital
In-Patient: Complex Rehabilitation
Ambulatory Care: Day Treatment
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Moderate to severe acquired brain injury
Major surgery with complications
Stroke with moderate functional impairment
Elderly patients with hip fractures
Multiple severe fractures/trauma
Elective surgery, hip and knee replacement
In-Patient: Complex Care
Multiple chronic conditions
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Stroke with major functional impairment
Advanced progressive neuro-muscular disease
Moderate or severe acquired brain injury
Cardiovascular and respiratory complications
Severe wounds
Post-surgical complications
Advanced diabetes
Advanced HIV/AIDS
End stage disease
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Physiotherapy
Occupational therapy
Speech language pathology
Social Work
Nursing
Vocational rehabilitation counseling
Physiatry
Spasticity Clinic
Cognitive group
Tai Chi group
Acupuncture
Pool therapy
Pain management
LEGSS (Lower Extremity Gait Support
Services
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Bridgepoint Collaboratory for
Research and Innovation
Leading edge research that advances
understanding of and action on CCD prevention
and care
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Research Themes
Quality & Safety
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Establishing clinical and health system excellence in caring for
patients with complex health issues
Innovations in Training
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Advancing healthcare education through the innovative use of
technology
Excellence in Design
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Determining indicators of excellence in healthcare facility design
Prevention
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Developing effective strategies to promote health for people living
with and at risk for chronic disease
Primary Care
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Advancing health and quality of life for people living with chronic
disease in the community
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Our Team
Collaboratory Staff
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Scientific Director
Research Scientists (5)
Clinician Scientists (2)
Post-Doctoral Fellows (1)
Research Associates (2)
Epidemiologist (1)
Research Assistants (3)
Students (9)
Administrative Staff (3)
Bridgepoint Health Collaborators
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Physicians
Professional Practice
Nursing
Executive team
Information management
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Advisors
Scientific Advisors
Alex Jadad
Canada Research Chair
Centre for Global eHealth Innovation
Ross Upshur
Associate Scientist
ICES and Primary Care Research Unit,
Sunnybrook Research Institute
Eva Grunfeld, MD, PhD
Director, Knowledge Translation
Research Network (OICR), Family
Medicine Research
University of Toronto
Harvey Skinner
Dean of Faculty of Health
York University
Louise-Lemieux Charles
Chair, Department of Health Policy
University of Toronto
Rick Glazier
Scientist
ICES and Li Ka Shing Knowledge
Institute
Andreas Laupacis
Executive Director
Li Ka Shing Knowledge Institute
Susan Jaglal
Toronto Rehabilitation Institute Chair in
Rehabilitation Research
Women’s College Research Institute,
University of Toronto, and ICES
Blake Poland
Associate Professor
Dalla Lana School of Public Health,
University of Toronto
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Accomplishments
Grants - more than 34 million dollars in
Collaboratory and partner initiated
applications
Human Resources - scientific leadership
for each of the 5 thematic areas
Research - Launched research projects in
5 research themes.
Training - Post-doctoral fellows, graduate
students, clinicians
Research Speaker Series - Monthly
research colloquium for Bridgepoint staff
and Toronto area researchers
Knowledge Translation - Published
papers, chapters, documents and a book
on complex chronic disease.
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The Bridgepoint Study
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The Bridgepoint Study
1.
Provide a better understanding of Complex
Chronic Disease (CCD).
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Develop a data system and a measure that
captures CCD.
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Better understand the needs and experiences of
people who have CCD.
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What is our motivation for doing
this research?
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Chronic disease management is expensive $
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We know that acute models of care do not work for complex
populations
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Little insight into the experiences of this population
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Little integration between biomedicine and social determinants of
health in research (and measurement)
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What do we hope to accomplish?
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Better understand individuals with complex chronic disease
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Use this information to inform data collection, care planning and
training
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Bridgepoint Health- “our lab” for disentangling
complexity
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A growing body of research demonstrates that targeted, integrated
and case managed care leads to better patient outcomes….but
what does this look like for people with complex chronic
disease?
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What do we know about CCD?
We want to better
understand these
Patients. Are these
our Bridgepoint
patients?
*Modified Kaiser Permanente Model
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Conceptual Framework:
Contributors to Complexity
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The Bridgepoint Study
“What are the characteristics, needs and experiences
of the patient population at Bridgepoint Health?”
Phase 1: Data Queries – Indicators of CCD
Phase 2: Patients Needs Assessments and Interviews
Phase 3: Additional interviews with cognitively impaired,
aphasic and non-English Speaking patients (and
proxy’s)
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The System
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Reflections
For Complex Chronic Disease
Need common data set
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Systematic collection
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Rehab and CCC
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Clinically meaningful, appropriate for research
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Allows for measurement of patient outcomes, changes in patient
characteristics over time, etc.
System facilitates extraction of information
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Methods and Procedures
Conceptual Framework Development
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Evidence base, expert consultation (Dr. M. Sullivan @ McGill, Dr.
P. Ritvo @ York), and BP staff
Interview Guide Development
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Item development based on conceptual framework & consultation
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Survey tool developed to capture bio-psycho-social factors
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Pilot testing - research assistants, “mock patients”, and patients
Recruitment
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4 Research Assistants, 3 Student Interns, 5 volunteers
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Patient Care Managers to identify potential participants
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Methods and Procedures
Data Collection
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Consent
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Interview scheduling, logistics, and multiple visits
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Digital recordings
Data Entry
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Quantitative – Data entry, data cleaning, data verification
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Qualitative – Transcription and verification of transcripts
Data Analysis
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Thematic coding of qualitative data using NVIVO9 software (Kerry)
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Quantitative descriptive analyses using SPSS & SAS
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Status Update
Data Collection
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Complete- 116 Interviews
Data Entry
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Quantitative – Data entry, data cleaning complete
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Qualitative- all interviews (116) transcribed; 92 thematically coded
Data Analysis
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Qualitative coding nearing completion
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Quantitative and qualitative analyses in progress
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Preliminary Results
The Patient Population
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Patients from all units interviewed – (N=116)
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73% Complex Continuing Care, 27% Complex Rehab
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58% Female
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Mean age: 63 (range: 19-96) SD = 16.96
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80% Caucasian, 87% English Primary Language
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27% have a partner (married or common law)
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43% High School or less, 57% Post-secondary education
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How the study sample compares
to the broader hospital population
Demographics
BP Study Sample
(n = 116)
All Patients in Hospital
During Data Collection
Period
(n = 865)
Age (mean and range)
63
19-96
71
18-97 years
Gender
58% female
56% female
Marital Status
27% married or living
common law
25% married or living
common law
Primary Language
87% English
93% English
Education
43% high school or less
No data available
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Findings: Symptoms and
Functions
We asked patients if they experienced the following…(N=111)
Symptoms Experienced
Functional Challenges Experienced
Pain
78%
Mobility
83%
Weakness
71%
Activities of Daily Living
60%
Emotional Upset
70%
Equipment/Devices
43%
Illness-related
symptoms
46%
Paying Attention
48%
Sensory Challenges
43%
Carrying on a
Conversation
27%
(e.g., nausea, vomiting,
chest pain, breathing
problems, etc.)
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Preliminary Results
Medical and Physical Health
Typically more than one condition with complications (e.g., wounds,
infections, etc)
Reasons for Admission:
• Sudden unexpected event (e.g., car or work accident)
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Post acute recovery (surgical)- such as hip fracture with
complications (wounds, infections)
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Post acute recovery (non-surgical)- such as stroke recovery
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Degenerative (long-term patient or recent relapse)
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Preliminary Results
Medical and Physical Health
Husband: “She's had MS for 35 years.”
Patient: “And it never... The only thing I couldn't do was walk. And it didn't bother me. We
built a house. And then all of a sudden this osteomyelitis hit me and my world just crashed. I
went right down as low as you go. Not in my mind but in my body.”
“Well, I suffered a heart attack while my wife were shopping, and I fell down and hit my head.
And also I went to another hospital. I can't... I have a bad memory now because of this, and I
can't think of the name of it… I was taken to the hospital. And in the hospital, I fell out of bed
for some reason and broke my left arm and my shoulder.”
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Preliminary Results
Mental Health
Centre for Epidemiological Studies Depression Scale-10 (N = 104)
- Depression Screening Measure (maximum score = 30)
Significant Depressive Symptoms*: 44%-- *scored 8 or greater
Borderline Significant: 4%
Non-significant: 52%
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Preliminary Results
Mental Health (Addictions)
“I have a few issues with depression. It's basically because I was in a car
accident in 2007 and I lost my daughter…there were 3 of us. There was my
wife, my ex-wife. We're separated actually…and we were going home, and
we got hit by a drunk driver. And basically that led to a separation with my
wife… I was in quite a bit of trouble with the law probably because of my
depression, probably because I didn't give a damn about much….I went
through rehab for 6, 7 months because when my daughter passed away, I got
into sleeping pills really strong, really heavy.”
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Preliminary Results
Mental Health (Coping and Adaptation)
“I don't have any belief in my health. So it's hard to say because if I was feeling good, they would
probably help me better. “
“You know, the first time I got sick, I was only 33. And my youngest son was only 4. My oldest
was not even 12. And we were very new in this country. Language problem, reading problem,
neighbours problem. Two times the police came to our house because the children were alone at
home. And my husband was with me in the hospital…But family is nice supporting – my
husband, my children. Like after everything, still we are doing good. That is one thing.”
“Your muscles are telling you give it up. Everything's telling you, you can't do this. And the only
way you can do it is get mad, fight all the pain. Like running a marathon…”
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Preliminary Results
Social Health
Of patients in the study (N=108):
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40% reported that family and/or friends live nearby now
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90% reported receiving visitors while at Bridgepoint
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Patients reported that they often or always:
• Lacked companionship – 61%
• Felt alone – 61%
• Felt left out – 66%
• Felt alone, even when with other people – 69%
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Preliminary Results
Overall Self-Assessed Health
Compared to one year ago, how would you rate your…now
Item
Worse
Same
Better
N
Overall Health
49%
27%
24%
112
Physical Health
55%
21%
24%
111
Mental Health
26%
47%
27%
111
Social Support
7%
43%
50%
109
Financial Situation
31%
51%
18%
106
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Preliminary Results
Health Experiences
“One person comes to see you to ask you one question. The next person comes to see
you, they are asking you different questions but that one question you had before
comes up again….Why can’t you correlate everything you’ve got to ask to one
person?”
“God help you if you need anything during huddle time.”
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Preliminary Results
Health Experiences
“They come from one hospital, finish their job there, 8 hours and they continuously
work 8 hours. So in one respect they are making good money. But who suffers?”
I know it’s governed and mandated that once a week you get a shower. But come on,
really! You know, really!”
“Like I understand understaffing and I think….I really think they are great nurses. I do.
But because they have such a high patient load, generally I wish some of my needs
could be met a bit faster.”
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Preliminary Results
Health Experiences
“I'm a little frustrated about having to be, I have to say the word, thrown out
because I am no longer actively improving on the wounds that have been
keeping me here….There are things that we might not be able to take
care of at home but since they are not changing, they say it's no longer
rehabilitation and say that I really need long term care. Which is far too
expensive for me to be able to deal with. I have to go home. There's no option.
But they recommend instead that I go to a nursing home, which is just
completely out of the question. I have a partner that has to be housed, and I
can't afford 2 locations.”
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The BP Study is Shedding Light
on….The Layers of Complexity
Micro- The Individual (number and range of
health conditions, mental health, coping style, etc)
Meso- applicability of best practices, care burden,
access to care, etc.
Macro- Socio-economic/political context including
the welfare state, access to healthy food,
safe neighborhood, etc.
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Summary
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Note that these are preliminary findings
• Data analysis ongoing
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What can we say with confidence at this point?
• Mental health, coping and adaptation are prominent themes
• Transitions are of particular importance (intake, hospital stay,
discharge, and follow-up)
• There is variability in the spectrum of needs across the patient
population
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Many changes needed
Data
Assessment
Model of Care
Skill Mix
Funding Formula
Practice Guidelines
Accreditation?
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Opportunities for Collaboration:
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Definitions and methods
Models of care/care coordination
Self-management
Evidence-based complex rehab
Health systems change
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“When Tommy Douglas brought our first universal
publicly funded health system to the province of
Saskatchewan, he passionately argued that Medicare must
not only ensure that people get the health care they need
when they need it, but it must implement public policies
for keeping people well, not just patching them up once
they get sick.”
---Dr. Carolyn Bennett
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