Living Well With Malignant Pleural Improving the Patient

EVOLVING STANDARDS OF CARE

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.

Th e 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.

Losing the Personal Touch to travel to the appointment and stay from page 6 over in a hotel, so I had a telephone visit with my provider. Th is particular visit continue to be one of the few profeswas important because it was to discuss sions that, before COVID-19, have pathology results from a recent biopsy. insisted on seeing people in person. Th ere was concern that my cancer had Th e idea that seeing a doctor over a returned aft er 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 diffi cult call to have over the phone of a patient’s skin, because I felt such the clearness of her eyes, and how her heart and lung

Another major focus for the charity is equitable e access to the best treatment, ennt, care, and support available, lable,able

with a particular emphasis on clinip cal trials. Mesothelioma UK cal triacal tr also provides support and soals information for anything in related to mesothelioma r including symptoms, support groups, and end-of-life care. This provision is enhanced and probably dependent a on the charity’s growing no continued on page 12

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 spending of almost £1 million (U.S. ( $1.2 million). The charity is the y is the is the sole funder of the National nnal Mesothelioma Audit and d has released research funds through a number of partner organizations. 4

I do concede that there are situations in which telehealth may be appropriate. However,

Because of the pandemic, travellocal doctor who puts “eyes” on me and ing was not advised, as I would need addresses the needs he can.

a disconnect with my provider. I also didn’t have time sound. In addigoing to a model of anything to have a family tion, patients need close to 100% telehealth would member on the call to feel a personal lead to a significant decline in with me. Th erefore, connection with the quality of care. 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. Th e 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. Th ankfully, 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

I do concede that there are situations in which telehealth may be appropriate. Th e 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 signifi cant decline in the quality of care. Th ere are many situations in which seeing a doctor face-toface is essential. ✦

Adapting to the New Virtual Environment

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to virtual visits. Th ese 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 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 refi ne it and as we make the experience even better for patients. ✦

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.

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

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