The Bridgepoint Study: Understanding Complex Patients and their Health Care Needs.

Transcription

1 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 1

2 Complex Chronic Disease What is Complexity? Diagnosis + 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 2

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4 The Burden of Complex Chronic Disease (globally and nationally) Life expectancies have increased by years in the last century (WHO,2005), with a corresponding increase in chronic disease (CD). CD accounts for 60% of global disease burden (World Health Organization, 2005). In Canada, acute care hospitalizations are decreasing but length of stay increasing due to the admission of more complex cases (CIHI, 2010). Seniors with multiple chronic conditions use 3x more health services than seniors with no chronic conditions (CIHI, 2011). 4

5 The Burden of Complex Chronic Disease (provincially) One in three Ontarians is affected by chronic disease (CD). 80% of the Ontario population aged above 65 has at least one chronic disease, while approximately 70 percent suffer from two or more. 25% of Ontarians admit it s difficult to lead a healthy life and make healthy choices. The economic burden of CD in Ontario alone is estimated to be 55% of total health costs (OMA, 2010). 5

6 What is Complex Continuing Care? Also known as extended care, chronic care or complex continuing care: Comprises 1/3 of Ontario s hospital beds provides ongoing professional services to a diverse population with complex health needs. may be free-standing or co-located with acute and/or rehabilitation services within one hospital serves individuals who may not be ready for discharge from hospital but who no longer need acute care services. (CIHI) 6

7 What is Complex Continuing Care? Emphasis has evolved from indefinite setting to a temporary setting More resource intensive than facility based long-term care Legislation sets no specifics as to what type of care these facilities are to offer, and most set their own admission criteria. 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 7

8 Bridgepoint Health 8

9 Bridgepoint Health 9

10 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 10

11 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 11

12 Bridgepoint Hospital 12

13 Bridgepoint Hospital In-Patient: Complex Rehabilitation 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 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 Ambulatory Care: Day Treatment 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 13

14 Bridgepoint Collaboratory for Research and Innovation Leading edge research that advances understanding of and action on CCD prevention and care 14

15 Research Themes Quality & Safety Establishing clinical and health system excellence in caring for patients with complex health issues Innovations in Training Advancing healthcare education through the innovative use of technology Excellence in Design Determining indicators of excellence in healthcare facility design Prevention Developing effective strategies to promote health for people living with and at risk for chronic disease Primary Care Advancing health and quality of life for people living with chronic disease in the community 15

16 Our Team Collaboratory Staff 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 Physicians Professional Practice Nursing Executive team Information management 16

17 Advisors Alex Jadad Canada Research Chair Centre for Global ehealth Innovation Scientific Advisors 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 17

18 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. 18

19 The Bridgepoint Study 19

20 The Bridgepoint Study 1. Provide a better understanding of Complex Chronic Disease (CCD). 2. Develop a data system and a measure that captures CCD. 3. Better understand the needs and experiences of people who have CCD. 20

21 What is our motivation for doing this research? - Chronic disease management is expensive $ - We know that acute models of care do not work for complex populations - Little insight into the experiences of this population - Little integration between biomedicine and social determinants of health in research (and measurement) 21

22 What do we hope to accomplish? Better understand individuals with complex chronic disease Use this information to inform data collection, care planning and training Bridgepoint Health- our lab for disentangling complexity 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? 22

23 What do we know about CCD? We want to better understand these Patients. Are these our Bridgepoint patients? *Modified Kaiser Permanente Model 23

24 Conceptual Framework: Contributors to Complexity 24

25 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) 25

26 The System 26

27 Reflections For Complex Chronic Disease Need common data set Systematic collection Rehab and CCC Clinically meaningful, appropriate for research Allows for measurement of patient outcomes, changes in patient characteristics over time, etc. System facilitates extraction of information 27

28 Methods and Procedures 1 Y E A R + Conceptual Framework Development Evidence base, expert consultation (Dr. M. McGill, Dr. P. York), and BP staff Interview Guide Development Item development based on conceptual framework & consultation Survey tool developed to capture bio-psycho-social factors Pilot testing - research assistants, mock patients, and patients Recruitment 4 Research Assistants, 3 Student Interns, 5 volunteers Patient Care Managers to identify potential participants 28

29 Methods and Procedures Data Collection Consent Interview scheduling, logistics, and multiple visits Digital recordings Data Entry Quantitative Data entry, data cleaning, data verification Qualitative Transcription and verification of transcripts Data Analysis Thematic coding of qualitative data using NVIVO9 software (Kerry) Quantitative descriptive analyses using SPSS & SAS 29

30 Status Update Data Collection Complete- 116 Interviews Data Entry Quantitative Data entry, data cleaning complete Qualitative- all interviews (116) transcribed; 92 thematically coded Data Analysis Qualitative coding nearing completion Quantitative and qualitative analyses in progress 30

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32 Preliminary Results The Patient Population Patients from all units interviewed (N=116) 73% Complex Continuing Care, 27% Complex Rehab 58% Female Mean age: 63 (range: 19-96) SD = % Caucasian, 87% English Primary Language 27% have a partner (married or common law) 43% High School or less, 57% Post-secondary education 32

33 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) 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 33

34 Findings: Symptoms and Functions We asked patients if they experienced the following (N=111) Pain Symptoms Experienced 78% Functional Challenges Experienced Mobility 83% Weakness 71% Activities of Daily Living 60% Emotional Upset 70% Equipment/Devices 43% Illness-related symptoms (e.g., nausea, vomiting, chest pain, breathing problems, etc.) 46% Paying Attention Sensory Challenges Carrying on a Conversation 48% 43% 27% 34

35 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) Post acute recovery (surgical)- such as hip fracture with complications (wounds, infections) Post acute recovery (non-surgical)- such as stroke recovery Degenerative (long-term patient or recent relapse) 35

36 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. 36

37 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% 37

38 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. 38

39 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 39

40 Preliminary Results Social Health Of patients in the study (N=108): 40% reported that family and/or friends live nearby now 90% reported receiving visitors while at Bridgepoint 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% 40

41 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%

42 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. 42

43 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. 43

44 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. 44

45 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. 45

46 Summary Note that these are preliminary findings Data analysis ongoing 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 46

47 Many changes needed Data Assessment Model of Care Skill Mix Funding Formula Practice Guidelines Accreditation? 47

48 Opportunities for Collaboration: Definitions and methods Models of care/care coordination Self-management Evidence-based complex rehab Health systems change 48

49 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 49

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