1,066 Myeloma Patients Answer HealthTree Survey of COVID-19’s Effects

1,066 Myeloma Patients Answer HealthTree Survey of COVID-19’s Effects
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Over some four weeks, 1,066 people with multiple myeloma took part in a survey sponsored by HealthTree to better understand how COVID-19 is affecting life for those with this blood cancer.

The survey, announced on April 16, aims to provide patients and physicians with information that will help guide future healthcare decisions. It assesses myeloma patient vulnerability, and the effect of the ongoing pandemic on treatment and disease outcomes.

Initial findings are expected to be released this month, with more extensive results published by December, HealthTree, a myeloma community online division of the nonprofit CrowdCare Foundation, stated in a press release.

“The patients who have decided to participate in this study are helping to accelerate research on COVID-19 and its impact on myeloma treatment and patient outcomes,” Jenny Ahlstrom, HealthTree founder, said in the release.

“HealthTree was designed to empower patients to make the most educated decision at every stage of their disease journey, all while moving the research community closer to a cure,” Ahlstrom added. “The COVID-19 pandemic has created enormous challenges to the cancer community, forcing doctors and patients to delay or make changes to treatment.

“With this study we will capture those challenges and outcomes.”

People taking part answered survey questions related to their health and care during the pandemic. Information gathered in questions was de-identified to protect privacy, and participants also completed a HealthTree profile.

Scientists working in myeloma will analyze the aggregated and anonymous answers to identify recommendations for patient care during the global viral outbreak, which has restricted access to health centers for extended periods of time. The American Cancer Society expects 32,270 new cases of myeloma will be diagnosed this year.

This survey is the first of a planned series of studies measuring how the pandemic is affecting people with myeloma, and cancer patients more broadly. Because this coronavirus is relatively new, little information is available on the risks for this patient group. However, cancer patients in general are considered among those thought at high risk of complications.

With a reported user base of more than 5,200 patients, HealthTree is an online community portal that helps people with multiple myeloma explore treatment options, find appropriate clinical trials, and contribute their de-identified data to aid work toward a cure. The CrowdCare Foundation provides patient education, advocacy, and research funding for myeloma and amyotrophic lateral sclerosis (ALS).

In related news, a case report suggests that Actemra (tocilizumab), an approved treatment for different types of arthritis, may help treat severe COVID-19 infections in people with multiple myeloma or other blood disorders.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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