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Individualized Care Plans Reduce Stress After Stem Cell Transplant


An individualized treatment summary and care plan reduced treatment-related distress among patients who previously underwent hematopoietic cell transplantation (HCT) for cancer treatment.

An individualized treatment summary and care plan reduced treatment-related distress among patients who previously underwent hematopoietic cell transplantation (HCT) for cancer treatment.

“There is distress from a variety of perspectives,” Navneet S. Majhail, M.D., M.S., Director of the Blood and Marrow Transplant Program at Taussig Cancer Institute of the Cleveland Clinic, said in an interview with CURE. “There is the fear of cancer recurrence, that is an ongoing concern that goes on for a long time. And there is the concern about psychosocial issues, like anxiety and depression, that are fairly high in our patient population.”

Survivors who previously underwent HCT are at an increased risk for long-term complications. Guidelines recommend long-term follow-up for these patients, including screening and management of any potential complications. However, as survivorship continues to improve, disparities among care can become “fragmented,” Majhail said.

“You don’t have that care coordination you need to make sure you are getting the care that you need. The whole idea of generating a care plan was to come up with a tool that could empower patients to know what kind of follow-up they need, or what kind of exposures they may have had that would put them at risk for certain complications.”

Therefore, the researchers conducted a randomized study to evaluate the impact of summaries and care plans on survivors’ confidence in survivorship information, and on cancer treatment distress, knowledge of transplant exposures health behaviors, health care utilization and health general self-efficacy. Results of this study were presented at the 59th American Society of Hematology (ASH) Annual Meeting and Exposition.

Survivors in the study were required to be 18 years or older, one to five years after transplantation, proficient in English, and without relapse of second cancers.

The researchers generated treatment summaries using patient-specific clinical data submitted by transplant centers to the Center for International Blood and Marrow Transplant Research (CIBMTR), and focus group feedback from patients/caregivers, HCT physicians/nurses/social workers and general hematologist and oncologists informed the design of paper-based survivorship care plans. Individualized care plans were then developed based on patient risk factors and treatment exposures such as age, sex, HCT type, graft-versus-host disease (GVHD), and use of total body irradiation or steroids. The researchers then published guidelines for long-term follow-up of HCT survivors.

“It is a two-sided, one page treatment summary that tells patients and their providers what were the key things they got around their transplant,” Majhail, also a member of the Case Comprehensive Cancer Center at Case Western Reserve University School of Medicine, said.

To evaluate the care plan impacts, a baseline phone survey was conducted after enrollment and included standardized patient-reported outcomes. Patients were then randomized to survivorship care plans or routine care per their transplant center. A phone survey conducted two weeks later assessed health literacy for patients on both arms and asked questions related to use of care plans for patients on the intervention arm. End-of-study phone patient-reported outcomes surveys were then administered at six months.

Out of 495 patients enrolled across 17 transplant centers, 458 completed the baseline survey. Of those, 231 patients were randomized to receive a survivorship care plan and 227 had routine care, of which 201 care plan participants and 199 routine care participants completed the six-month assessments.

Among patients who received survivorship care plans, 41 percent underwent allogeneic HCT (versus 44 percent), 11 percent received previous HCT (versus 16 percent), and 21 percent had total body irradiation (versus 20 percent) compared with those who had routine care.

Among allogeneic HCT recipients, 63 percent of the survivorship care plan arm and 67 percent of the routine care arm had a history of acute GVHD, while 60 percent and 66 percent had a history of chronic GVHD, respectively.

The researchers observed that receiving a survivorship care plan was not associated with a change in survivors’ confidence in survivorship information, however, this was significantly associated with reductions in cancer treatment distress. They noted this decrease in distress was independent of factors such as sex, transplant type, GVHD status, diagnosis and health literacy.

“To make this study as applicable as possible, the effect we saw in improving distress, that was purely giving them this care plan,” Majhail explained. “We did not do anything else. We were not calling them every so often, doing follow-up or getting this assessment. We gave them a care plan and then followed them six months later. So, just giving them a care plan has this effect. It will hopefully be very useful.”

Lastly, the researchers found that younger patients appeared to have higher levels of cancer treatment distress, however, patient age had no association with the impact of survivorship care plans. In addition, no effect from care plans was observed on other secondary outcomes.

In conjunction with these results, Majhail recommends that patients be their own advocates in their survivorship plans. “They key messages for patients would be to empower yourself with information about what kinds of treatments you have had, what kind of care do you need moving forward. Be your own advocate. Advocate for your own long-term care, your own health and work with your providers on that.”

Moving forward, Majhail would like to implement this strategy using an online approach. “How do you implement this in a real-world setting? We designed a trial as pragmatically as possible. It was a very straight forward,” he added. “With the way we practice currently and the use of technology in health care, I think that would be an ideal place we want to go.”

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