2020 American Society of Hematology – 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:

Patient-Centered Care

Care coordination

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:

  •       Practice patterns
  •       Challenges
  •       Barriers to collaborative MF care

Providers identified the following challenges with team-based MF care:

  1.       Managing MF-associated anemia in patients
  2.       Providing individualized care to patients
  3.       Developing in-house expertise to treat MF

The study authors pointed out that:

  •       None of the providers reported incorporating patient preferences in their decision making
  •       Teams were underutilizing shared decision-making tools
  •       Patient-centered care resources were underutilized

The providers fell short on providing:

  •       Visual aids for patient education
  •       Counseling on financial toxicity
  •       Resources for patients to manage MF-related fatigue
  •       Counseling to reduce risk factors for bleeding, thrombosis, cardiovascular disease

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.

Physician Attitudes Toward Patient Care

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:

  •       38% of all residents believed that SCD patients overreport pain and seek drugs
  •       IM residents were more likely to find SCD patients frustrating to work with
  •       While most residents had empathy for SCD patients, only half of IM residents said they could be friends with SCD patients, compared to 82% of EM residents

The following findings from the study are concerning:

  •       Resident attitudes became increasingly negative with increasing years of training
  •       Advanced residents were more likely to believe SCD patients overreport pain
  •       Advanced residents felt more frustrated working with SCD patients
Are provider attitudes towards #SickleCellDisease patients negative? As per a 2019 study out of U Chicago, YES. Same study found residents believe SCD patients over-report pain, and found SCD patients frustrating to work with. Click To Tweet

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.

Self-management and Telehealth


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:

  •       55% said they had either heard of or had received a telehealth service
  •       85% said they could or had downloaded Zoom
  •       80% said they were interested in using telehealth to connect with a provider
  •       Majority (95%) of respondents had access to WiFi
  •       64% had assistance at home to access the telehealth service and 46% said they would be interested in a community health worker’s support to get started with a telehealth service
  •       94% indicated an interest in having access to a 24-hour SCD care hotline

When asked about how they were specifically managing access to care and treatment during the pandemic:

  •       Only 35% said they had visited an ER to seek care
  •       52% reached out to an SCD care provider rather than visit the ER
  •       53% managed their crisis at home
  •       16% reported difficulty with filling prescriptions, some due to affordability issues

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.

Self-Management Among Adolescents With SCD

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:

  •       Most AYAs logged onto the app at least weekly
  •       88% saved a pain diary entry; common strategies for pain management were:
    •   Resting
    •   Drinking water
    •   Using distractions
  •       Only 54% of AYAs completed at least one self-management goal
  •       Lower confidence level was associated with a lower chance of completing self-management goals

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.

Patients Rising Stories logo

Patient Stories have power.

Across the nation, people are sharing their healthcare stories to raise awareness and affect change.

Lend your voice to the movement and help bring about change in healthcare.

Submit your Story today!

Financial Burden of Health Care

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.

  •       21% earned less than $40,000 annually
  •       22% spent over $500/month in out-of-pocket (OOP) costs for their cancer care
  •       23% spent $250/month in OOP costs for their cancer care

What was the downstream impact of the financial burden of cancer care on these patients?

  •       29% depleted their savings
  •       19% withdrew or borrowed against their retirement plans
  •       13% were forced to liquidate their assets
  •       7% enrolled in unemployment insurance
  •       4% took up another job
  •       4% chose a less-effective treatment (which may have been cheaper)
  •       4% broke a life-insurance policy to get cash
  •       2% had to foreclose their home

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:

  •       12% to postpone their doctor’s appointments
  •       5% to postpone follow-up screening or bloodwork
  •       6% to postpone prescription fills
  •       5% to skip doses of prescribed medicines
  •       16% to postpone mental health counseling

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.

From the Editor:

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.

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.

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.