ATAQ-LAM, a LAM Specific Quality Of Life Instrument
BY JEFF SWIGRIS, DO, MS, LAM CLINIC ASSOCIATE DIRECTOR, NATIONAL JEWISH HEALTH, DENVER
I don’t need to tell you what it’s like to live with LAM (or live with someone affected by LAM)—you’re the experts on that topic. Drawing on that expertise has created the underpinnings of my research program: go to the experts to try to more fully understand how a chronic respiratory disease affects patients (and their loved ones). It is only through such understanding that we—as clinicians and researchers—are able to try to devise strategies to lessen the negative effects these diseases have on how patients feel and how they function.
How we human beings feel (physically and mentally), how we function (physically, in our homes and the swath of the world that we frequently “use”) and how we interact with the environment (people and places) within which, or with whom, we interact, to a great extent, determines our quality of life. My research mission is to understand how chronic respiratory diseases impact patients’ quality of life, to devise ways to accurately measure how patients feel and function and what their quality of life is, so that, ultimately, we can find ways to improve them.
As a patient with LAM, FEV1 is also important, right? We don’t want to see the FEV1 go down; and we’d love it if a drug (or other intervention) in our armamentarium made the FEV1 go up. But I’d argue such changes in FEV1 are really most important if they translate into something beneficial in the patient-centered realm…like fewer or less-severe symptoms…or improved physical functioning…the ability to be more active with kids or partners. Those patient-centered things are what I’m most interested in.
That, in a nutshell, is how ATAQ-LAM (A Tool to Assess Quality of life in LAM) was born. ATAQ-LAM is a questionnaire developed to assess quality of life, and those domains that are important for determining quality of life in patients with LAM. For those of you who don’t know, we developed ATAQ-LAM by conducting focus groups and interviews with several of women with LAM (and we thank you for your generosity and willingness to share your time and feelings with us). We asked you about the things that mattered most to you (in terms of LAM and how living with it affects your lives) and then formulated questions around them. My hope is that we can use ATAQ-LAM in research moving forward to determine if therapies on the horizon alter things—really important things—other than FEV1.
Jeff Swigris, DO, MS
Associate Professor of Medicine
Director, Interstitial Lung Disease Program
National Jewish Health
Southside Building, Office #G011
1400 Jackson Street
Denver, Colorado 80206, USA