LUNGCANCERNEWS.ORG / JUNE 2020
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Making Mesothelioma Patient Research Happen: The UK Experience By Liz Darlison, MBE, EN, RN, BSc, MSc; Clare Gardiner, PhD, BSc (hons); Catherine Henshall, MN, RN, MA, PhD; and Angela M. Tod, PhD, MSc, MMedSci, BA (hons), RN
This article has been condensed for print. The full version, including information about the role of a clinical nurse specialist and how they benefit care, as well as more detailed information about each study, can be found at lungcancernews.org.
The United Kingdom has the highest incidence of mesothelioma in the world. More than 2,700 people in the United Kingdom are diagnosed each year.1 Despite epidemiologists predicting that the peak would be reached approximately 5 to 10 years ago,2,3 the incidence continues to rise. Established almost 16 years ago, Mesothelioma UK is a national charity dedicated to the disease. Mesothelioma UK funds audit and research, and over the last 4 years this has translated into
Losing the Personal Touch
to travel to the appointment and stay over in a hotel, so I had a telephone visit with my provider. This particular visit continue to be one of the few profes- was important because it was to discuss sions that, before COVID-19, have pathology results from a recent biopsy. insisted on seeing people in person. There was concern that my cancer had The idea that seeing a doctor over a returned after 4 years of being stable. device is the same as seeing a doctor My oncologist informed me that the in person has many faults. A doctor cancer had, indeed, returned. It was may need to see things like the color a difficult call to have over the phone of a patient’s skin, because I felt such the clearness of a disconnect with I do concede that there are her eyes, and how my provider. I also situations in which telehealth her heart and lung didn’t have time may be appropriate. However, sound. In addito have a family going to a model of anything tion, patients need member on the call close to 100% telehealth would lead to a significant decline in to feel a personal with me. Therefore, the quality of care. connection with questions went their doctors to unanswered, and share details that might be important. I didn’t really remember the answers A patient may not feel comfortable or to the questions I did ask. The entire like he is in a private space when at call lasted 8 minutes, according to my home, which might lead the patient to phone’s timer. Thankfully, I have his withhold information that might be email address, and he is great about foluncomfortable to discuss. lowing up. He also knows that I have a Because of the pandemic, travel- local doctor who puts “eyes” on me and ing was not advised, as I would need addresses the needs he can. from page 6
EDITOR Corey J. Langer, MD, FACP ASSOCIATE EDITORS Fabrice Barlesi, MD, PhD Caicun Zhou, MD, PhD EDITORIAL GROUP MEMBERS Ross Camidge, MD Edgardo S. Santos Castillero, MD, FACP José Francisco Corona Cruz, MD Marianne Davies, DNP, ACNP, AOCNP Anne-Marie C. Dingemans, MD, PhD Narjust Duma, MD Ivy Elkins Mary Jo Fidler, MD Janet Freeman-Daily, MS, Eng Shirish Gadgeel, MD Deepali Jain, MD Karen Reckamp, MD
Christian Rolfo, MD, PhD, MBA Witold K. Rzyman, MD Beth Sandy, MSN, CRNP Ricardo Sales dos Santos, MD, PhD Joan Schiller, MD Suresh Senan, MD Brendon Stiles, MD Aaron Tan, MD Ricardo Terra, MD, PhD, MPH MANAGING EDITOR AND PUBLISHER Joy Curzio, Curzio Communications COPY EDITORS Alana Williams and Elaine Michl PRODUCTION DIRECTOR Doug Byrnes
spending of almost £1 million ((U.S. $1.2 million). The charity y is the sole funder of the National n nal Mesothelioma Audit and d has released research funds through a number of partner organizations.4 Another major focus for the charity is equitablee access to the best treatment, en nt, care, and support available, lable, able
with a p particular emphasis on clinical tr trials. tria Mesothelioma UK also als so provides support and information for anything in rrelated to mesothelioma including symptoms, support groups, and end-of-life care. This provision is enhanced aand probably dependent on o n the charity’s growing continued on page 12
I do concede that there are situations in which telehealth may be appropriate. The healthcare system may be overrun, at certain times, if everyone went to the doctor for every cold or cut. If someone needs a simple antibiotic or a referral to another doctor, then a simple video
conference or telephone call may be appropriate. However, going to a model of anything close to 100% telehealth would lead to a significant decline in the quality of care. There are many situations in which seeing a doctor face-toface is essential. ✦
Adapting to the New Virtual Environment
necessity of the COVID-19 pandemic, but it is a change to my practice that I believe is here to stay. Some of that will likely be due to the same necessity of COVID-19. However, I anticipate that some will be due to patient demand for telehealth as we continue to refine it and as we make the experience even better for patients. ✦
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to virtual visits. These patients navigate New York City to come in for their yearly scan, are stuck in the waiting room with other patients, and generally get to see me for just 5-10 minutes, during which I usually tell them that their scans are ok and that I will see them again next year. We can certainly do that over telehealth, ensure that they are well, and still maintain our personal connection. In conclusion, my experience with telehealth has been positive. Adopting it into my practice was sped up by the
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About the Author: Dr. Stiles is a thoracic surgeon at NewYork-Presbyterian Hospital and an Associate Professor of Cardiothoracic Surgery at Weill Cornell Medicine, New YorkPresbyterian Hospital. He is a member of both the IASLC Communications Committee and the ILCN Editorial Group. Follow Dr. Stiles on Twitter @BrendonStilesMD.
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