Guest Column | April 14, 2023

The Caregiver Impact On Access To alloHCT Treatment

By Anna DeSalvo, MS, CGC, and Jaime Preussler, MS, National Marrow Donor Program/Be The Match

Mature couple holding hands at a doctors office GettyImages-1390156782

When you think of barriers a patient might face in accessing cancer care, insurance coverage, financial constraints, or language may come to mind first. But have you considered the impact a formal or informal caregiver has on patient access to cancer care or clinical trials?

Published studies have found that having a person to drive the patient to appointments, attend appointments and ask questions, review paperwork, provide emotional support, and help the patient adhere to treatment plays a major role in cancer care.1,2

The caregiver role is important for all patients with cancer. But for those who need allogeneic hematopoietic cell transplantation (alloHCT) for a blood cancer or disorder, a formal caregiver isn’t just important, they are usually required.

Most transplant centers require patients to have a caregiver 24 hours a day, seven days a week for up to 100 days — just over three months — after receiving alloHCT because of the treatment intensity and the regimen a patient must adhere to during recovery. That 100 days is in addition to any support the caregiver provides before transplant.

If a patient does not have a full-time caregiver, this potentially curative and lifesaving treatment likely will not be an option.

It’s not clear where the caregiver requirements came from, and there are no written guidelines recommending against alloHCT for patients who have poor social support.3 In addition, “social support” is a broad term that lacks definition, and studies on how social support impacts outcomes for patients have conflicting results.4

This demonstrates a need for formal research to better understand which components of caregiving and social support impact patient outcomes.

Gold Standard For Caregiver Requirements Is Lacking

The National Marrow Donor Program (NMDP)/Be The Match is determined to understand caregiver requirements, barriers to securing or becoming a caregiver, and the impact on access to care. In 2022, we began a caregiver requirement study that continues today. While the study is specific to alloHCT, many learnings could be transferable to other treatments and clinical trials.

Web-based focus groups with U.S. transplant center social workers who work with adult HCT patients revealed center-to-center variation in the caregiver requirements. While all 22 social workers said their transplant center required a caregiver in order for a patient to go to transplant, the length of time the centers required a patient to have a caregiver ranged from 60 to 180 days.

Other variations included:

  • How near to the transplant center the patient and caregiver needed to stay after transplant center discharge
  • How many days the patient and caregiver needed to stay close to the transplant center after HCT
  • Whether or not centers made exceptions to caregiver requirements

The social worker focus group participants said that, on average, two patients a year do not proceed to transplant because they do not have a caregiver. One social worker stated, “If you don’t [have a caregiver], you really can’t go through the process. It’s almost impossible.”

Social workers also expressed concern that some patients who do not have a strong support system may not be getting referred for transplant.5

All participants stated that it would be helpful to have a “gold standard” list of requirements that all transplant centers followed. However, there was no consensus on what those requirements would include.

Many Barriers Prevent Patients From Securing A Caregiver

The requirement of a 24/7 caregiver for an extended period can make it difficult for some patients to secure a caregiver, even if they have a spouse or partner. Common barriers to securing or becoming a caregiver include:5–8

  • Caregiver cannot afford to lose income or take time away from work
  • Caregiver has other family members that require care, such as elderly parents or small children
  • Caregiver has health concerns that would prevent them from carrying out the necessary duties
  • Patient has limited social ties
  • Patient is concerned about losing independence or feeling like a burden so resists asking for help

Along with social worker focus groups, we interviewed adult patients who received alloHCT and caregivers of adult alloHCT patients to understand their perspective and experience.

One patient said, “Actually just going to people and asking…that was a big thing for me. It wasn’t for those that I asked, but for me to ask, it was hard.”

Another shared that the system doesn’t seem like it is set up for success for every patient saying, “I’m not married, and I don’t have children. And so, [in] a lot of ways these situations are set up for a default where you have one caregiver. Usually, it’s your spouse or your kid or your significant other...Not everybody has a significant other or children or a built-in structure.”

Understanding what the caregiver role itself entailed was another common barrier. Some patients and caregivers said they didn’t get enough information, while others reported being overwhelmed with too much information. This shows a need for clear information to help patients and caregivers understand the role requirements.6

Healthcare Community Must Take Steps To Ensure Treatment Access For All

When a patient cannot secure a caregiver, it can prevent or limit access to transplant and other curative therapies. When a patient does have a caregiver, the caregiver must have information and support to be able to help the patient. The caregiver also must have support to take time for themselves.

What can we do as a community to find solutions for patients who cannot secure a caregiver or to ease the burden on caregivers? It will likely require a change in long-standing practices.

For example, right now a patient receiving alloHCT must have a caregiver 24/7. If the caregiver cannot afford to miss work but can be present the rest of the time, could telehealth or wearable technology fill the gap? Telemedicine could allow the healthcare team to check in on the patient. Wearable technology could monitor the patient’s vitals to ensure the patient has not spiked a fever or monitor heart rate and blood pressure.9,10,11

These solutions could also benefit patients and caregivers who live further away from the transplant center or who have other transportation obstacles. These examples can translate to the clinical trial environment, too, where follow-up tests and appointments are often necessary.

We must all think about what we can do to decrease the burden on caregivers and patients to ultimately improve access to potentially life-saving treatments. We can start by taking a hard look at caregiver requirements to determine which requirements are truly necessary and required for patient health and safety.

As a healthcare community, we have a responsibility to patients and caregivers to take steps to lower the burden and ensure equal and equitable access to care.

References

  1. Hendren S, Chin N, Fisher S, et al. Patients’ Barriers to Receipt of Cancer Care, and Factors Associated with Needing More Assistance from a Patient Navigator. J Natl Med Assoc. 2011;103(8):701-710. doi: 10.1016/s0027-9684(15)30409-0
  2. Davis RE, Trickey AW, Abrahamse P, et al. Association of Cumulative Social Risk and Social Support With Receipt of Chemotherapy Among Patients With Advanced Colorectal Cancer. JAMA Netw Open. 2021;4(6):e2113533. doi: 10.1001/jamanetworkopen.2021.13533
  3. Sharma A, Johnson LM. Should Poor Social Support Be an Exclusion Criterion in Bone Marrow Transplantation? The American Journal of Bioethics. 2019;19(11):39-41. doi: 10.1080/15265161.2019.1665736
  4. Beattie S, Lebel S, Tay J. The Influence of Social Support on Hematopoietic Stem Cell Transplantation Survival: A Systematic Review of Literature. PLoS One. 2013;8(4): e61586. doi: 10.1371/journal.pone.0061586
  5. Preussler JM, Huberty P, DeSalvo A, Schoeppner K, Sees Coles J. Can You Spare 100 Days? The Allogeneic Hematopoietic Cell Transplant Caregiver Requirement. Blood. 2022;140(s1):5015. doi: 10.1182/blood-2022-167699
  6. Preussler JM, DeSalvo A, Tweeten B, O’Brien B, Schoeppner K, Sees Coles J. Can You Spare 100 Days? Allogeneic Hematopoietic Cell Transplant Caregiver Requirements from the Perspective of Recipients and Caregivers. Poster presented at: Transplantation and Cellular Therapy Tandem Meetings of ASTCT and CIBMTR; February 16, 2023; Orlando, FL. https://tandem.confex.com/tandem/2023/meetingapp.cgi/Paper/22176.
  7. Preussler JM, Mau LW, Majhail NS, et al. Caregiver availability and patient access to hematopoietic cell transplantation: social worker perspectives inform practice. Support Care Cancer. 2019;27(11):4253-4264. doi: 10.1007/s00520-019-04696-2
  8. Frey P, Stinson T, Siston A, et al. Lack of caregivers limits use of outpatient hematopoietic stem cell transplant program. Bone Marrow Transplant. 2002;30(11):741-748. doi:10.1038/sj.bmt.1703676
  9. Mayo Clinic. A Study to Evaluate the Use of a Novel Wearable Device for Temperature Monitoring in Cancer Patients Who Underwent Autologous Stem Cell Transplant. Accessed March 24, 2023. https://www.mayo.edu/research/clinical-trials/cls-20426329.
  10. Campagna BR, Tutino R, Stevanovic K, et al. Acceleration of mobile health for monitoring post‐transplant in the COVID‐19 era: Applications for pediatric settings. Pediatr Transplant. 2022;26(1):e14152. doi: 10.1111/petr.14152
  11. Vaughn J, Jonassaint J, Summers-Goeckerman E, Shaw RJ, Shah N. Customization of the TRU-PBMT App (Technology Recordings to better Understand Pediatric Blood and Marrow Transplant). J Pediatr Nurs. 2018;42:86-91. doi: 10.1016/j.pedn.2018.07.007

About The Authors:

Anna DeSalvo is a practice implementation principal at the National Marrow Donor Program (NMDP)/Be The Match. In this role, she helps translate research findings into meaningful programs and standardized practice to provide the best care and outcomes for patients. Previously, she worked with the Clinical Trials Search and Support team within NMDP/Be The Match. Prior to joining NMDP/Be The Match, DeSalvo worked as a genetic counselor in multiple clinical settings including oncology and clinical genomics. She graduated from the Icahn School of Medicine at Mount Sinai genetic counseling program in 2016 and received a certificate in implementation science from the University of California San Francisco.

Jaime Preussler is a health services research analyst at the NMDP/Be The Match. In this role, she conducts quantitative and qualitative research to identify and address barriers to care for individuals with blood cancers and disorders and their caregivers. Jaime has a Master of Science in health services research, policy and administration from the University of Minnesota and is currently working on her doctorate in population health from the University of Wisconsin-Madison.