Highlights from the American Society of Hematology's 2020 annual meeting which featured valuable patient-focused research.
Each year, the annual meeting of the American Society of Hematology (ASH) brings together physicians, researchers, patients, patient advocates, and policy makers. Together they deliberate the progress made in the field of blood-based diseases. While the pandemic forced a virtual venue for the meeting, the research shared remained outstanding. Here is a review of some of the patient-focused research that was presented at ASH this year:
In an effort to improve the quality of care delivered to patients with myelofibrosis (MF, a form of cancer), researchers at The University of Texas MD Anderson Cancer Center analyzed the barriers for delivering patient-centered care in three community oncology centers. The focus of this exercise was integrating team-based care for improved care coordination. Thirty-one health care providers at these community centers were asked to fill out a survey to self-report on:
Providers identified the following challenges with team-based MF care:
The study authors pointed out that:
The providers fell short on providing:
Conclusion: At the end of this exercise, 73% of participating providers committed to sharing their treatment action plans with team members while others said they would create a quality task force to oversee implementation of action plans.
A pilot study in 2019 was conducted at the University of Chicago Medical Center in Sickle Cell Disease (SCD). The study identified physician bias as a reason for patients not getting adequate analgesic medicine for their pain. The group followed up these findings by conducting a survey among frontline care providers. These were residents in internal and emergency medicine (IM and EM, respectively) who care for SCD patients. The survey looked to adequately address these biases with an intervention. The residents who participated in the survey ranged in age from 20-39 years and were of all races: White, Asian/Asian-American, Black/African American, and Latinx. The survey found that:
The following findings from the study are concerning:
Conclusion: The authors recommend developing education, training, and wellness programs to address these biases among residents and to help them deliver more patient-centered care for the SCD patient population.
The utilization of telehealth broke a lot of records during the COVID-19 pandemic, because patients were forced to stay away from clinics and hospitals for safety reasons. However, telehealth services may not be easily accessible to all. Community-based organizations in five states across the country (California, Colorado, Oregon, Nevada, and Arizona) directly reached out to SCD patients to understand their challenges with seeking care remotely during the pandemic.
Among the nearly 200 patients or their caregivers who were interviewed as part of the study:
When asked about how they were specifically managing access to care and treatment during the pandemic:
Conclusion: While access to technology was not a barrier among survey participants, the authors identified the need for access to knowledgeable care providers to improve patient competency and comfort with self-managing their condition using telehealth resources.
Can integrating a mobile health app (mHealth) in the care plan help adolescents and young adults (AYA) improve self-management of their SCD? This was the question posed by researchers in Cincinnati who analyzed data from 26 AYAs who participated in a regular group intervention session and used mHealth. All participants were African American and between 13 and 21 years old.
The study noted the following:
Conclusion: While the study population was small, findings hint toward a beneficial effect of mHealth. Effects include achieving their self-management goals, documenting pain symptoms, and mood, resulting in an overall health improvement in the SCD population.
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How does the cost of care influence patients’ health care decisions. Decisions such as delaying treatment or appointments with care providers. How does that in turn affect their physical and mental health? Researchers surveyed cancer patients (multiple myeloma and chronic lymphocytic leukemia) enrolled in the Cancer Support Community’s patient registry and shared the results at the ASH meeting.
The responses showed a strong association between financial burden and delaying care, leading to a poor quality of life. A majority of survey participants were non-Hispanic white, with an average of 5 years since their cancer diagnosis.
What was the downstream impact of the financial burden of cancer care on these patients?
The other more disturbing finding from the survey was that 66% of respondents said that the financial impact of care was never brought up by anyone on their care team. The squeeze on their finances forced:
Conclusion: The authors recommend that cancer patients could benefit if they had access to low-cost or free preventive and supportive psychosocial care and financial counseling. Several patient organizations, including Patients Rising Concierge, already provide such services. The focus of future research should be on improving patient-physician communication.
Are you a researcher who has done patient-focused research? Contact me, Jim Sliney Jr. We’d like to read about it and maybe share it with our audience.
Surabhi Dangi-Garimella, Ph.D. is a biologist with academic research experience, who brought her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.
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