Inadequate survivorship care after allogeneic hematopoietic cell transplantation: A retrospective chart review

Introduction

Patients who undergo allogeneic hematopoietic cell transplantation (HCT) are typically exposed to chemotherapy and radiation therapy as part of their cancer treatment and transplant conditioning regimens. Two-thirds of HCT survivors have at least one chronic medical illness, and one-fifth of survivors have at least one severe health condition². Their life expectancy is estimated to be 30% lower than the general population because of excess risk of death from second malignancy, cancer relapse, infection, chronic graft-versus-host disease (GVHD), and pulmonary and cardiovascular diseases³. Follow-up care after HCT is essential to screen for long-term complications and institute preventive therapies. To standardize management of complications after HCT, a collaborative group led by the Center for International Blood and Marrow Transplant Research (CIBMTR) published guidelines for survivorship screening and preventive practices for long-term survivors after HCT⁴. The guidelines provide specific monitoring recommendations categorized into 13 organ systems commonly affected in transplant survivors. Although the guidelines were published in 2012, adherence to these guidelines among transplantation oncologists and other clinical providers has not been evaluated.

To determine whether providers utilize HCT survivorship care guidelines, we conducted a retrospective, single-institution case series of provider adherence to the guidelines at the 2-year follow-up visit after HCT. In addition, we analyzed whether survivorship-focused care, provider gender, or provider years of practice influenced adherence to the recommended guidelines for managing HCT survivors.

Methods

Results

Discussion

HCT survivors are at risk of developing long-term complications. Guidelines for survivorship care of HCT recipients were published in 2012; however, the degree to which these guidelines are incorporated into clinical practice is unknown. In the present study, we demonstrate that adherence to the 2012 guidelines is sub-optimal and identified areas needing diligent assessment attention in the long-term care of HCT recipients. While all providers followed certain guidelines of survivorship care, such as liver function screening, renal screening, and blood pressure screening, there were several areas identified where extra training in survivorship care would enhance the implementation of screening measures. Our study showed that survivorship-focused providers performed more extensive screening assessments and counseling in 7 organ systems (ocular, oral, cardiovascular, musculoskeletal, central nervous system, mucocutaneous, and second cancer screening) as compared to other providers. Given the discrepancy in these areas, further oncology education in HCT survivorship care for all providers is needed to improve the health of HCT survivors.

Caring for HCT survivors requires understanding their long-term morbidity and probability of high mortality. The challenge for clinicians in caring for HCT survivors is tremendous and a major responsibility of the transplant team. In our case series, there were several important areas where clinicians could improve their assessment of HCT survivors, including immunization assessment and completing immunizations on schedule, assessment of endocrine dysfunction, cardiovascular disease, cognitive function, sexual function, psychosocial and quality of life, inquiry of family functioning, substance abuse, counseling on physical activity, fall prevention, supplementation with calcium/vitamin D, and awareness of second malignancies. All of these areas were noted to be significantly deficient in many patients in our series. Having a provider with a background and interest in survivorship care improved the number of long-term health screenings an HCT recipient received; however, there is still room for improvement as less than a quarter of HCT survivors received a truly comprehensive clinical assessment during their 2-year visit.

Over a decade ago, the Institute of Medicine proposed that all cancer survivors have a survivorship care plan (SCP), which should include a treatment summary and follow-up care plan^5,6. The American Society of Clinical Oncology and other professional organizations put tremendous effort into developing various survivorship care models, such as the SCP, treatment summaries, and implementation strategies to attain improved quality care for all cancer survivors; however, the implementation of these SCPs has not been satisfactorily accomplished in oncology practices^7–10. There are several practical issues: lack of time and staff, lack of coordination and communication among providers, and potentially reimbursement. In addition, evaluation of the benefits in terms of improved outcomes of survivorship care is ongoing^11,12.

The post-transplant visit is allocated 30 minutes for each patient, with labs studies completed prior to the provider visit. Addressing complex medical issues and potential complications during 30 minutes is challenging for providers. A high-quality post-transplant visit can only be completed with expert time management and thorough preparation and coordination of care among providers. Using electronic methods or automation to ensure the thirteen identified areas are covered during the 2-year visit would ensure that all HCT patients receive the recommended care.

One proposed strategy to overcome the above-mentioned barriers is a risk-stratified shared-care model with delegation of roles and responsibilities between the oncologist and primary care provider. For example, subspecialists such as a dentist, an ophthalmologist, and a psychologist could be closely involved in coordination of long-term follow-up care¹³. It has been shown that the frequency of health promotion and health behavior discussions are suboptimal by clinicians because of the fact that approximately 25% of cancer survivors are not engaged in any such discussions¹⁴. Cancer survivors are likely to receive appropriate interventions for their comorbid conditions if they routinely follow up with their primary care providers¹⁵. Educating HCT survivors with ongoing care by their primary care providers will be an important element in post-transplant care. In general, coordinating the shared care of a cancer survivor between oncology and primary care appears insufficient because of primary care providers’ knowledge, attitudes and comfort in caring for cancer survivors^16,17. With effective and efficient communication, this strategy is likely a feasible option to achieve.

Several transplant centers have adopted the concept of a dedicated clinic of providers that focus on the long-term effects of cancer and previous treatment and deliver education on healthy lifestyle behaviors to reduce complications and lower the risk of additional cancers, while the non-transplant oncologist focuses on cancer surveillance. Our study suggests the potential benefit of having dedicated providers for HCT survivors as the providers’ interest, enthusiasm and additional training would likely lead to a comprehensive review of all important clinical assessment in a well-organized fashion.

Several professional oncology organizations have proposed a SCP in a denotable template and web applications with data storage (e.g., The American Society of Clinical Oncologists, Journey Forward and OncoLink) to assist in developing a survivor’s own care plan and delivering health education. It is critical to allow the survivors to be actively involved in their SCP. One other potential approach would be to have patients complete their clinical assessment questionnaire prior to their visit; this questionnaire would allow the provider to focus on clinical assessment and counseling rather than data collection. In addition, the electronic medical record could be customized to ensure a comprehensive assessment by providing clinicians with a SCP to-do list.

Our analysis also supports the notion that some categories in assessment (eg, laboratory testing for liver function, renal function and blood pressure measurement) were completed 100% of the time as simply a result of routine practice. Further work is needed to examine how the electronic medical record can more efficiently automate these measures.

Our analysis may be limited in that it is a retrospective chart review at a single transplant center a few years after guidelines were published. It captures one time point in the management of HCT survivors who are likely followed by their primary care clinic in addition to our transplant clinic; important clinical issues during other visits or by their primary care providers may have occurred. Given there is currently no standard for being an expert in survivorship care, providers also self-reported their expertise in survivorship care. Another factor that has to be taken into account in this chart review is the comprehensiveness of the documentation of topics addressed at these visits. For example, mental health screening may have occurred; however, if not documented, the screening was not captured. Nonetheless, this study is the first step to recognize how effectively HCT survivorship care is being provided. Despite these limitations, this study demonstrates that providers need more education in long-term complications of cancer treatment, as well as strategies and tools about how to implement these screening recommendations in a timely, efficient manner given the other demands of their clinical practice.

In conclusion, post-transplantation care by survivorship-focused providers was more likely to achieve the long-term screening recommendations set forth by experts from international transplant professional societies; however, there is room for improvement in adherence to the guidelines even within this group of providers. Our study highlights the critical need of survivorship education for providers as well as better tools to automate this process. Given the complexity of caring for HCT survivors, new comprehensive and efficient tools to improve adherence to these guidelines are needed to provide optimal survivorship care.

Data availability

Dataset 1: Underlying study data with data dictionary 10.5256/f1000research.15633.d215885¹⁸