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Comprehensive follow-up care model stands to serve current, future HSCT survivors
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SALT LAKE CITY — Long-term follow-up clinics with telemedicine access can ensure hematopoietic stem cell transplant survivors receive appropriate care for symptoms and recommended screenings, according to a presenter at the BMT Tandem Meetings.
Multidisciplinary long-term follow-up care is crucial for survivors of HSCT because of their increased risk for late complications, Mary E. Flowers, MD, director of the long-term follow-up program at Seattle Cancer Care Alliance; member of the clinical research division, long-term follow-up at Fred Hutchinson Cancer Research Center; and professor in the medical oncology division at University of Washington School of Medicine, said during her presentation.
For instance, study data show HSCT survivors have higher risk for chronic health problems compared with their siblings (overall, RR = 1.88; 95% CI, 1.39-2.11; grades 3-5, RR = 3.52; 95% CI, 2.31-5.38) and have higher incidence of secondary malignancies.
Challenges faced by HSCT survivors involve many systems and span across disciplines, including neuropsychological, cardio, liver, gonadal, bone health, kidneys, pulmonary and infectious diseases.
“Just look at the magnitude of the systems that can be affected tells us the importance and complexity of taking care of these patients,” Flowers said. “And it does take a village.”
Adherence to recommendations
Specific screening and preventive practice guidelines have been developed for HSCT survivors, but it is unclear how well this guidance is followed.
Flowers and colleagues conducted a cross-section study of adherence to screening and preventive care practices of HSCT survivors transplanted at Fred Hutch/Seattle Cancer Care Alliance using a healthy survey of 236 questions and a 45-item module about guideline adherence. The survey also included a one-page copy of guidelines to serve as a reminder for patients, presenting an opportunity for researchers to inquire whether the guidelines were known by the patients and implemented.
A total of 1,549 survivors responded to the survey, for a 51% response rate. The median age of respondents was 54.5 years (median age at transplant, 42.4 years), 95% were white, 51% were men, and 92% had a myeloablative condition.
Median adherence to recommend preventive care based on age and sex was 75%, which appeared higher than adherence according to National Center for Health Statistics data on the general population from 2008.
For example, 90% of females aged older than 40 years had a mammogram in the past 2 years in the Seattle Cancer Care Data, compared with 68% of the general population. Also, 82% of respondents aged older than 50 years had a colonoscopy/sigmoidoscopy, compared with 62% of the general population.
Flowers and colleagues found factors associated with lower adherence included autologous transplant, concerns about medical costs, non-white race, male sex, lower physical functioning, absence of chronic graft-versus-host disease, longer time since transplant and poor knowledge of recommended tests.
Factors associated with the lack of knowledge about survivorship recommended tests included autologous HSCT, male sex, absence of chronic GVHD, and 15 or more years since transplant.
Flowers also noted there was a high rate of concern about medical costs, despite that 98% of the cohort had private insurance.
“There were two modifiable predictors that we identified in our study: the medical costs and lack of knowledge,” Flowers said. “I think there is an opportunity here to improve the communication of those guidelines.”
Care delivery models
Overall, there is a lack of evidence for care delivery models for survivors of HSCT, Flowers said, and the models of care delivery that exist vary depending on many factors.
However, two models have emerged in the last 2 years. One is a patient-centered care coordination model that was recently reviewed in Blood Advances. Also, ASBMT practice guidelines committee survey on long-term follow-up clinics for HSCT survivors have been submitted for publication.
“This is very good timing of these efforts,” Flowers said. “There has been a great development in the last 2 years, a wave of trying to understand, reach out and prevent those late effects.”
The traditional management of patients posttransplant involves the transplant center providing the primary source of care, not the PCP.
“The problem with this for many of the big centers is the geographic diversity of patients being transplanted,” Flowers said. “Having a direct transplant-patient care traditional model would not work for us. We really needed to have a collaborative management model, where we advise the PCP, and we advise the patient, and then we collaborate with those doctors.”
Fred Hutch/Seattle Cancer Care Alliance’s model incorporates a follow-up care clinic and collaboration with the patient’s primary care provider or hematologist/oncologist.
The general timeline for the model includes an HSCT consultation, intake, arrival conference and data review conference prior to transplant. Three months later, patients are prepared to return to their PCP or community hematologist/oncologist and are incorporated into the long-term follow-up care clinic, which provides services for the rest of the patient’s life.
“Long-term follow-up at our institution is a dedicated program that has a consultation aspect and continuum of care for more complex patients who are more difficult for PCPs to provide care for. Those patients come back to the transplant center until they are stable and able to return to their PCP,” Flowers said. “At the long-term follow-up care clinic, we provide resources for these patients for life. Which means, any patients transplanted in our center has access to telemedicine, and afterwards, even if it’s the weekends, we have on-call providers who can be accessed to help with the patient’s issues.”
This care also provides a research component, as patients with chronic GVHD continue to live longer and require additional types of care. The Seattle long-term follow-up research population included 4,819 patients in 2014, and the clinical service — which includes patients in long-term follow-up who have been returned to their PCP — included 6,100 patients.
The model includes a consultation service in the long-term follow-up care clinic prior to discharge, at 80 to 100 days posttransplant. During this service, nurses or advance practice providers deliver departure classes and perform physical examinations for the patients, who receive a letter summarizing their testing recommendations, a medication list, a calendar for recommended monitoring, general guidelines and contact information for the long-term follow-up clinic. The attending physician reviews graft function, disease status, chronic GVHD risk and monitoring, and recommendations regarding immunosuppressive medications and antibiotics.
“All the follow-up care is not necessarily provided by us, but we provide a roadmap for the care,” Flowers said.
Following discharge, the long-term follow-up clinic provides telemedicine consultation for patients to contact the center by email or telephone. Nurses triage these requests, and patients with severe conditions are sent back to the transitional transplant clinic.
“The idea here is to alleviate the high burden of care by PCPs,” Flowers said. “But, we cannot always offer that, because some of our patients are in Alaska and it’s very expensive for them to come back. So, we work the hematologist/oncologist taking care of that patient via telephone.”
Centers should consider collaborative management models “because of reality and the geographic disparity of survivors,” Flowers said.
“We did a transplant to cure disease, but we may leave the patient with other problems that we did not intend,” she added. “We owe it to these patients to be proactive, provide dutiful care, and continue to do research to improve cancer care for the survivors of tomorrow.” – by Alexandra Todak
Reference:
Flowers ME. Compliance and survivorship care delivery models. Presented at: BMT Tandem Meetings; Feb. 21-25, 2018; Salt Lake City.
Disclosures: Flowers reports no relevant financial disclosures.