Multidisciplinary Collaborative Interstitial Lung Disease (ILD) Clinic
The Multidisciplinary Collaborative Interstitial Lung Disease (ILD) Clinic (MDC ILD) is located in the Kaye Edmonton Clinic at the University of Alberta. Dr. Kalluri is the founder and director of the MDC ILD Clinic, which was created in 2012 and looks after a large group of patients from Northern Alberta, some from Northern BC, Saskatchewan, Northwest Territories and Yukon. The clinic offers in person and virtual appointments. The clinic team works with radiologists, pathologists, rheumatologists and occupational medicine specialists as needed to ensure rapid and accurate diagnosis of ILD.
- We focus on early treatment (antifibrotic and other therapies), referral to lung transplantation when needed and improving our patients’ quality of life.
- Patients can also participate in clinical trials when available.
- Family members or support persons are encouraged to attend appointments so that caregivers can be engaged in decision-making and care.
This unique clinic focuses on the individuals’ needs (education, information, support), and not only on medications and monitoring. This includes “talking to patients about their quality of life, how to live their best life possible, advance care planning and supportive or palliative care to facilitate patient goals and wishes, right from their first visit with us” Dr. Kalluri notes. Patients will have access to a highly trained ILD team who can support them at all points in their journey. Our research revealed (1) improved symptom care and advance care planning, (2) high patient and family satisfaction and improvement in perceived quality of life and death, (3) decreased hospitalizations and hospital deaths, and (4) cost savings in our clinic model compared to traditional care.
Patient Centered ILD Care Components
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- ILD experts at our center will work with a team of doctors to make an accurate diagnosis and discuss all treatment options with you. This may include medication including lung transplantation. You may be invited to participate in clinical trials
- We use specialized screening tools to assess symptoms and other needs in advance of the appointment.
- In clinic, we provide personalized care plans and education based on patients’ identified needs. Patients learn to self-manage at home and avoid unnecessary hospitalizations. For example, breathlessness is a very challenging symptom, and when you cannot breathe nothing else matters. Therefore, we address these needs at every clinic visit.
- We help patients and families anticipate problems and troubleshoot issues that may arise at home. When patients and their families know what to expect, they are better prepared, more confident and have less anxiety.
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Planning ahead
This is a key step in managing your disease and ensuring your care is in alignment with your values, wishes and goals.
- We spend time listening and talking to patients and their families to learn of their goals and needs.
- We encourage reflection, open and honest discussion with families and care teams.
- These conversations help identify and document your preferences for care, end of life and a decision-maker who can speak on your behalf should you lose capacity.
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- These group sessions are run by respiratory therapists and other professionals and held at Kaye Edmonton Clinic or Edmonton General Hospital or in a virtual format.
- Sessions provide education, time for discussions and supervised exercise in a safe environment. You will have the opportunity to interact with and learn from exercise therapists, dietitians and other patients.
- Research shows that such programs can help patients manage symptoms, understand their disease and become “experts” in self-management.
Pulmonary Fibrosis support group for comradery and connection
The clinic team has also facilitated the development of the Pulmonary Fibrosis Patient Support Group of Alberta in collaboration with Alberta Lung Association. Our patient support group is active and meets regularly. They have resumed online services during the pandemic and have many interesting opportunities for engagement as well activities planned for ILD patients and their families. There are additional opportunities to participate in annual workshops and education days during the Pulmonary Fibrosis awareness month (September)
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Linking with community supports
We refer patients to available in home community services (rehab, allied health, home care, oxygen providers). We work closely with these members when needed. This type of collaborative care helps patients live well at home, as well as giving them quick access to local services when needed. This approach helps address patient problems early and within the comfort of their own homes. Patients and their families find this type of support very useful and appreciate the coordination and seamless communication between teams. The clinic team together with home care teams provides care at home for those with advanced disease unable to travel or preferring to receive care at home. This type of whole person care is ideal and desired by most patients. Unfortunately, many patients do not receive this type of support, education and palliative care when needed. This leads to unnecessary distress and suffering that is avoidable. We recognize the need to support patients from the first visit and strive to provide end-to-end care, education and support through our community teams wherever possible.
Multidisciplinary ILD Clinic Team
The ILD Clinic is fortunate to have an excellent team dedicated to the care of our patients. Please see our contact information for more about how to reach out to us!
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Program Director: |
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Dr. Meena Kalluri |
| Associate Professor | |
| Department of Medicine | |
| Division of Pulminary Medicine | |
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Dr. Kalluri is the founder and director of the Multidisciplinary Collaborative Interstitial Lung Disease (MDC ILD) Clinic, Kaye Edmonton Clinic, AHS. She is an Associate Professor of Medicine at the University of Alberta, Edmonton. She completed her medical training including her residency in internal medicine and fellowships in pulmonary and critical care medicine with additional training in interstitial lung diseases in South Carolina, USA. Her research focus is on studying how a patient's health-related quality of life can be improved through better treatment for breathlessness and cough (most common symptoms) and increasing self-management literacy. Her team is studying how better doctor-patient-family communication can affect illness course, care received and thus reduce burden and suffering for patients. Her research has shown that a clinic model that focuses on patient & family centered care with an early integrated supportive/palliative approach can not only improve care, and patients perceived quality of life; it can decrease family burden, reduce hospitalization rates and save healthcare dollars. She has also developed a medical education program to train learners, next generation doctors in delivering person/patient centered holistic care. |
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| ILD Clinic Team: | |
| Physicians | |
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Dr. Meena Kalluri, Dr. Giovanni Ferrara, Dr. Ashley Whidden |
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Dr. Giovanni Ferrara graduated in Medicine in 1998, at the University of Chieti, in Italy. He received his specialist training in Respiratory Disease at the University of Modena and Reggio Emilia, between 1998 and 2002. He has a PhD in Experimental Medicine (2006). His thesis work was on immune response and new immunological assays for the diagnosis of latent tuberculosis infection. He had the opportunity to spend 18 months at the New York University, as visiting researcher, during his PhD. He was appointed as assistant professor in Respiratory Disease at the University of Perugia, in Italy, in 2007. He moved to Sweden in 2010 and worked both clinically and in research at the Karolinska University Hospital and at the Karolinska Institute, receiving also the title of associate professor. He continued to cultivate his interest for TB, immunology of the lung and rare pulmonary diseases. He developed the Swedish Registry for Idiopathic Pulmonary Fibrosis and was the chairman of the group. He moved to the University of Alberta in February 2019 and joined the ILD clinical team, where he plans to continue his research in rare pulmonary diseases and TB. |
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Dr. Whidden completed her medical degree and residency training with a Respirology fellowship at the University of Alberta. In addition to practicing general Respirology in the Edmonton area, she has an interest in Interstitial Lung Disease. She focuses on the patient's experience of their condition and symptom management to help patients feel empowered and supported. When she is away from the hospital and clinic, she enjoys spending time with her young family and getting outdoors in all of Alberta's natural beauty.
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| Dr. Sana Vahidy | |
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Dr. Vahidy’s educational background includes completing Medical School, Internal Medicine and Respirology training in Edmonton. After graduation, she went on to pursue additional clinical and research training in Interstitial Lung Diseases under the supervision of Dr. Chris Ryerson in Vancouver, British Columbia. Dr. Vahidy strives to provide excellent care to patients and their families. |
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Registered Nurse |
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Catharine Carson is a registered nurse and has been working in the capacity of ILD clinic coordinator since 2016. She received her nursing diploma from University of Alberta School of Nursing. She has 23 years of experience in chronic disease management in pulmonary and cardiovascular surgery. As part of this outpatient ILD team, she coordinates care, provides education and longitudinal care between appointments. Her focus is on symptom management and empowering patients to live well with ILD. From day one she has been inspired by Dr Kalluri’s passion for a patient centric approach and the impact that it has on patients, their families and the teams members themselves. |
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RD; Dietitian |
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Minh Huynh is a registered dietitian who is passionate about chronic disease management. She received her Master’s degree in Human Nutrition from the University of Alberta. Over the years she has provided nutrition counseling in a variety of areas including: diabetes, kidney and heart disease. She is currently helping patients with nutrition concerns in the MDC ILD clinic. The best thing about this work is the ability to follow patients closely and tailoring to each person’s nutrition concerns. |
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Administrative Support |
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Anne-Maree Moreau is the administrative assistant for the ILD clinic. She has been working with the team since 2017. She has extensive experience as an admin assistant in various positions including in Nuclear Medicine as a technologist at the Royal North Shore Hospital in Sydney, Australia for 25 years. She is the friendly voice on the other end of the line whenever patients call the office, and will do her best to help with whatever is needed for patients and the ILD clinic team. |
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Breathe easy program - Pulmonary Rehabilitation |
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| Link here! | |
| * Patients cannot self-refer to rehab programs; all referrals must come from their respirologists | |
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ILD Rehabilitation Program: |
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| RRT contact: Darla VanSpengen | |
| Location: KEC and online classes (780-735-3492) | |
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* Patients cannot self-refer to rehab programs; all referrals must come from their respirologists |
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Community Teams: |
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| Home care teams- across the province (patients can self refer using the link below | |
| AHS Home care teams located across the province (link here) | |
| AHS Palliative care (link here) | |
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Dr. Janice Richman Eisenstat - Respiratory palliative care expert |
| Oxygen providers (link here) | |
| Community Pharmacists | |
| The Lung Association - AB & NWT Support Groups (link here) | |
| Pulmonary Fibrosis Patient Support Group of Alberta | |
| (contact pfgroup@ab.lung.ca ) | |
ILD are a group of lung diseases that cause inflammation and scarring of the lungs (pulmonary fibrosis- PF). There are many different types of ILD, with different causes, treatments, and disease courses. In patients with PF, the lung tissue becomes scarred and stiff, and over time may become more widespread. The scarred up lungs lose their ability to transfer oxygen to the blood, resulting in shortness of breath and vital organs being deprived of the necessary oxygen to survive. As a result, patients suffer from breathlessness, cough and tiredness that lead to a poor quality of life and early death. The incidence and prevalence of ILD are on the rise worldwide. Please see the Canadian Pulmonary Fibrosis Foundation (CPFF) website for more information.
Idiopathic Pulmonary Fibrosis (IPF) is a common type of ILD without a known cause; a progressive disease that tends to worsen with time. Most ILD including IPF have no cure. Some are familial with known genetic abnormalities. Research is ongoing to understand the biologic pathways and develop new therapies. In the meantime, the public can reduce their risk of ILD by avoiding smoking (including second hand and third hand exposure) and minimizing workplace exposures (talk to your doctor if you have concerns about your exposures at work or home). Acid reflux is also linked to progression of ILD and managing it well may help. Maintaining a healthy diet, exercise regimen and body weight will help with general health.
Patient Stories
Patient perpectives: How IPF has changed our lives
International Resources
- Living Well with Pulmonary Fibrosis (https://www.youtube.com/c/PulmonaryFibrosisFoundation/featured)
- American Pulmonary Fibrosis Foundation
- European Respiratory Society
Canadian Resources
- Canadian Pulmonary Fibrosis Foundation
- BREATHE | the lung association
- Scleroderma Canada: Home End of Life Resources
- Exercise and Pulmonary Fibrosis
- One Breath at a time - exercise video for Pulmonary Fibrosis
- Virtual Exercise Programs for Pulmonary Fibrosis Patients
Alberta Resources
- MyHealth
- Breathe Easy Program - Pulmonary Rehabilitation Program
- Palliative Care - About Us
- Who Will Speak for You?- advanced care planning kit for Albertans
- List of Oxygen Companies in Alberta
Support Groups
- Accessing your Pulmonary Fibrosis Support Group
- Pulmonary Fibrosis Patient Support Group of Alberta (pfgroup@ab.lung.ca ); http:// pfgroup@ab.lung.ca
- Scleroderma Alberta Facebook page
- Scleroderma Alberta website
- Article: Patient support groups are a lifeline for those living with idiopathic pulmonary fibrosis (The Lancet Respiratory Medicine)
COVID-19 and Pulmonary Fibrosis
- Webinar by CPFF - "Pulmonary Fibrosis and COVID-19", April 2020
- Webinar by CPFF - "Pulmonary Fibrosis during COVID-19: what patients need to know and how to cope", May 2020
- PFF Webinar - "PFF response to COVID-19: the current landscape", July 2020
MDC ILD Clinic Resources
For Physicians and Health Care Providers
- Tool - Multidimensional Dyspnea Scale (MDDS)
- This is a clinical scale developed for early, individualized recognition of dyspnea to facilitate appropriate management
- For licensing information, please contact Mr. Qunag tran (qmtran@ualberta.ca)
For Patients
Media Stories
New tool helps start conversations about end of life - Folio, October 23, 2019
New clinical model to manage terminally ill IPF patients decreases suffering and costs - Pulmonary Fibrosis News, July 31, 2019
Innovative patient-centered lung clinic reduces suffering along with costs - Folio, July 25, 2019
Edmonton collaborative care approach for IPF delivers true patient-centered care - CPFF Newsletter, May 2019
Awards
- Dr. Kalluri and the team received the Jon B Meddings Clinical Innovation award from the Department of Medicine in 2019.
MDC ILD Clinic story was published in AHS palliative and end of life newsletter (link) and recognozed nationally by the Canadian Foundation for Healthcare Improvement in 2017 as an emerging innovation in Palliative care.
Featured talks and educational tools:
PILOT Education Transforming Pulomnary care
- Website link -Animated video series
- PDF link - Optimizing care for patients with ILD
- PDF - Palliative medicine in pulmonology
- Real World Impact in IPF: How to make system level changes? - slides
Selected Publications: (past 6 years)
Fong, S., Richman-Eisenstat, J., & Kalluri, M. (2020). Buccal Hydromorphone Syrup for Managing Dyspnea in Idiopathic Pulmonary Fibrosis. American Journal of Hospice and Palliative Medicine®, 1049909120969126.
Kalluri, M., Bendstrup, E., Lindell, K. O., & Ferrara, G. (2020). Early referral to palliative care in IPF–pitfalls and opportunities in clinical trials. Respiratory Research, 21(1), 1-4.
Bendstrup, E., & Kalluri, M. (2020). Real-World Data on Bleeding Risk and Anticoagulation in Patients with IPF Treated with Antifibrotics. Drug Safety, 43(10), 953-955.
Archibald, N., Bakal, J. A., Richman-Eisenstat, J., & Kalluri, M. (2020). Early Integrated Palliative Care Bundle Impacts Location of Death in Interstitial Lung Disease: A Pilot Retrospective Study. American Journal of Hospice and Palliative Medicine®, 1049909120924995.
Kalluri, M., Luppi, F., & Ferrara, G. (2020). What Patients With Idiopathic Pulmonary Fibrosis and Caregivers Want: Filling the Gaps With Patient Reported Outcomes and Experience Measures. The American Journal of Medicine, 133(3), 281-289.
Kalluri, M., Lu-Song, J., Younus, S., Nabipoor, M., Richman-Eisenstat, J., Ohinmaa, A., & Bakal, J. A. (2020). Health care costs at end-of-life for patients with idiopathic pulmonary fibrosis: evaluation of a pilot multidisciplinary clinic. Annals of the American Thoracic Society, (ja).
Kalluri, M., & Richman-Eisenstat, J. (2019). From consulting to caring: care redesign in idiopathic pulmonary fibrosis. NEJM Catalyst, 5(2).
Moran-Mendoza, O., Colman, R., Kalluri, M., Cabalteja, C., & Harle, I. (2019). A comprehensive and practical approach to the management of idiopathic pulmonary fibrosis. Expert Review of Respiratory Medicine, 13(7), 601-614.
Kalluri, M., Claveria, F., Ainsley, E., Haggag, M., Armijo-Olivo, S., & Richman-Eisenstat, J. (2018). Beyond idiopathic pulmonary fibrosis diagnosis: multidisciplinary care with an early integrated palliative approach is associated with a decrease in acute care utilization and hospital deaths. Journal of pain and symptom management, 55(2), 420-426.
Pooler, C., Richman-Eisenstat, J., & Kalluri, M. (2018). Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers’ experiences. Palliative medicine, 32(9), 1455-1464.
Daoud, A., Richman-Eisenstat, J., & Kalluri, M. (2018). The impact of advance care planning in interstitial lung disease (ILD). Chest, 154(4), 802A.
Johannson, K. A., Pendharkar, S. R., Mathison, K., Fell, C. D., Guenette, J. A., Kalluri, M., ... & Ryerson, C. J. (2017). Supplemental oxygen in interstitial lung disease: an art in need of science. Annals of the American Thoracic Society, 14(9), 1373-1377.
Kalluri, M., & Richman-Eisenstat, J. (2017). Early and integrated palliative care to achieve a home death in idiopathic pulmonary fibrosis. Journal of Pain and Symptom Management, 53(6), 1111-1115.
Kalluri, M., Claveria, F., Haggag, M., & Richman-Eisenstat, J. (2016). Early integrated palliative care in a multidisciplinary interstitial lung disease (ILD) collaborative reduces hospitalizations for idiopathic pulmonary fibrosis (IPF). Chest, 150(4), 472A.
Ryerson CJ, Camp PG, Eves ND, Schaeffer M, Syed N, Dhillon S, Jensen D, Maltais F, O'Donnell DE, Raghavan N, Roman M, Stickland MK, Assayag D, Bourbeau J, Dion G, Fell CD, Hambly N, Johannson KA, Kalluri M, Khalil N, Kolb M, Manganas H, Morán-Mendoza O, Provencher S, Ramesh W, Rolf JD, Wilcox PG, Guenette JA.High Oxygen Delivery to Preserve Exercise Capacity in IPF Patients Treated with Nintedanib: Methodology of the HOPE-IPF Study. Ann Am Thorac Soc. 2016 Sep;13(9):1640-7.
Kalluri M, Puttagunta L, Ohinmaa A, Nguyen T, Wong E. Cost Impact of intra procedural Rapid on site evaluation (ROSE) of cytopathology with endobronchial ultrasound (EBUS). Int J Technol Assess Health Care. 2015 Jan;31(5):273-80.
Du Plessis, J., Kalluri, M., & Richman-Eisenstat, J. (2015). A Multidisciplinary Team Approach to the Care of Patients With Advanced Interstitial Lung Disease (ILD) in the Outpatient Setting. Chest, 148(4), 400A.
Kalluri M, Richman-Eisenstat J. Breathing is not an option. Dyspnea is. Journal of Palliative Care August 2014;30(3):188-91
Rajwani. N, Puttagunta L, Barrie J, Kalluri M. Pulmonary Ossification Syndrome in a patient with Chronic Thromboembolic Pulmonary Hypertension. Can Respir J. 2014; 21 (2):83-5.
Notes of appreciation:
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