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Dilini Vethanayagam Severe Asthma: The Patient Journey Asthma Society of Canada University of Alberta May 7, 2016
Outline / Objectives • Background Severe Asthma • Canadian Severe Asthma - Patient Journey • Review of Canadian Health System - in relation to asthma management • Next Steps
Respiratory - or Asthma Symptoms?? • Wheezing • Chest tightness • Cough / Sputum • Exercise limitation • Dyspnea (shortness of breath) - Perception of Dyspnea Differential diagnosis - many causes for each symptoms
Spectrum of Obstructive Airways Disorders Asthma
Adult BPD
Bronchiectasis
COPD
Other
Difficult-to-Treat Asthma Robinson, et al. Eur Resp J 2003
• 12/100 - did not have asthma • 7/100 - additional diagnoses • 55/100 - physiologic confirmation asthma present • 20/100 - not confirmed physiologically • 10/100 - major psychiatric component
Developing Severe Asthma Consensus • ATS Refractory Asthma Workshop (AJRCCM 2000) • Consensus Statement (Chanez JACI Jun 2007) • Uniform Definition of Severe Asthma (Bousquet JACI Nov 2010) • Canadian Severe Asthma Network (CSAN) CTS, Allergen, CIHR (devel. grants) Asthma Society Patient Groups - NAPA, CSAN
Defining Severe Asthma - Today Untreated Severe Asthma
• Treatable respiratory symptoms
Difficult-to-Treat Severe Asthma
• Adherence • Triggers • Co-morbidities
Treatment-resistant Severe Asthma
• Refractory symptoms despite optimization of management
Severe Asthma: Patient Journey (e-Pub) • Late 2013, ASC conducted a study of Canadians about their experience with SA as well as the complex health, social and economic issues related to SA • Included in-depth interviews as well and on-line survey • Studied how SA affects a patient’s quality of life, expectations for the future, medication preferences and experience with the healthcare system
Expert Advisors • Expert advisors helped create definitions within the constructs of a patient-recruitment study, establish the project scope, address barriers and challenges, devise a methodology of data collection tools, assistance (in part) with participant recruitment • Mr. Rob Oliphant - CEO, ASC (2013, 2014) • Dr. Susan Waserman - Professor, McMaster University • Dr. Jason Lee - Private Practice Lecturer, University of Toronto • Dr. Dilini Vethanayagam - Associate Professor, University of Alberta • Dr. Céline Bergeron - Assistant Clin Professor, Université de Montréal • Dr. Clare Ramsey - Assistant Professor, University of Manitoba
Rationale and Study Objective • High morbidity / mortality severe asthma • High health care costs • Objective: To examine the journey for patients with severe asthma from the patient’s standpoint
Study Methodology - Mixed Design • Examined patients in four urban centres located in three provinces (Alberta, Ontario and Quebec) using: • Qualitative survey (n=24) involving a lengthy personal interview • Online-based quantitative survey (n=200) to validate the results of the in-depth interviews
• Participants were Canadian adults 18 years and older who live with controlled or uncontrolled SA, and who have been diagnosed with asthma by a physician (specialist if feasible) • Indicators used to determine the severity of asthma were based on a variety of indices of asthma control such as those listed by GINA; reviewed by a team of expert advisors
An Invisible Illness “The worst part of living with asthma used to be that nobody believed me. It’s kind of an invisible illness. You don’t always want to say ‘I am not feeling well, I have asthma’ because there is still a stigma. Even when you go to the hospital, they ask, ‘Well, how bad is your asthma attack?’ What difference does it make? An asthma attack is an asthma attack and I need help, otherwise I wouldn’t be here.” - A Canadian Severe Asthma Patient
Main Findings 1. SA is not well-managed for most patients 2. Inconsistent diagnoses and treatments impair quality of care 3. Patients are not equipped to manage their Severe Asthma. 4. Financial challenges create significant barriers to better health outcomes. 5. SA significantly impairs a patient’s quality of life Weaknesses: Definition of SA - vs Control (pxn perspective) Poor capture of certain groups (i.e. First Nations)
What Patients With SA Want • To function normally while completing household activities, walking and enjoying life (98% very important, 1% somewhat important) • To not have to visit the emergency department visits or hospital admissions (89% very important, 9% somewhat important) • To sleep without nighttime symptoms (87% very important 11 % somewhat important) • To exercise without asthma symptoms (80% very important 17% somewhat important)
What Patients With SA Want • To go to work (84% very important, 5% somewhat important) • To improve breathing test results (74% very important 17% somewhat important) • To live without daytime symptoms (68% very important, 26% somewhat important) • To lower the overall amount of asthma medication taken (69% very important 17% somewhat important) • To escape from dependence on reliever medications (55% very important, 24% somewhat important)
Call to Action • Patients: Know your rights - and responsibilities; patient groups • Health Professional Groups: Establish clear guidelines for SA *Canadian guidelines don’t work well across all of Canada • Licensing Bodies (and CCFP): Empower guideline adherence • Health Systems / Administrators: Encourage integrated interdisciplinary teams (including SW, CRE’s)
• Government (Provincial, Federal): Education on Severe Asthma, targeted research funding, evaluation of health systems funded
Call to Action – Health Care Teams • Primary Care: More rapid access to services “when you can’t breathe, nothing else matters” • Specialty Clinics (hospital-based clinics): - models of care that promote early access as required (non-ED After-hours structure, free parking!) - consider adjunct tools for diagnostics & phenotyping (sputum cell counts); alternate therapies for some (i.e. CBT, biologics, thermoplasty) • Medical School Curriculums (17 in Canada): - ↓ educational time on respiratory physiology
Health Care Costs - Single Payer System Costs? 3o Care
2o Care
1o Care
Primary Care - Continuity of Care • Large number of Canadians do not have primary care “Primary Care Breakdown” • Primary care, when available, needs to work closely with sub-specialists for asthma management
• 40% Albertans do not have 1o care with a continuity of care model of care (CIHI report) • Large number of severe asthma patients do not have a primary care set up
BNA Act (1867): Differences Across Canada • Established Federal-Provincial relationship for health • Variations in care by Provinces • Variations in care by health jurisdictions
• Canadian Health System: based on effective 1o care • Specialty / sub-specialty services more effective with
effective primary care
Canadian Infoway • Infoway concept introduced in 1991/1992 • 2011-2016: Rapidly increasing specialty and primary care clinics with Electronic Medical Records (EMRs) and Electronic Health Records (EHRs) • Alberta Netcare (EHR) – introduced in 2003 (Edmonton), province-wide for imaging, labs, OR reports, some consultations 2009 • Full EMR (Edmonton) since June 2012 • Most EMR’s do not have physiology monitoring tools (vs diabetes blood sugars) • E-systems do not necessarily “talk” well to one another - inter-operability of EMRs*
Newfoundland: Birthplace of Telehealth
Dr. Maxwell House
“When I found out I had asthma I felt like I was drowning: I was having difficulty breathing which made me feel like I was struggling under water. Everything was so overwhelming that I didn’t know where to turn or what to do.” - A Canadian Severe Asthma Patient