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NCCN Guidelines Insights: Survivorship, Version 2.2019

J Natl Compr Canc Netw

2019 Syrjala, Karen L, PhD Karen Syrjala

The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for consequences of cancer and cancer treatment to aid healthcare professionals who work with survivors of adult-onset cancer. Guidance is also provided to help promote physical activity, weight management, and proper immunizations in survivors and to facilitate care coordination to ensure that all needs are addressed. These NCCN Insights summarize some of the topics discussed by the NCCN Survivorship Panel during the 2019 update of the guidelines, including the survivorship population addressed, ways to improve care coordination, and pain management.

Worsening cognitive performance is associated with increases in systemic inflammation following hematopoietic cell transplantation

Brain, behavior, and immunity

2019 Syrjala, Karen L, PhD Karen Syrjala

BACKGROUND: Cognitive decline is a frequently cited concern among patients receiving hematopoietic cell transplantation (HCT), and patients often experience neurocognitive deficits (i.e., stable or worsening neurocognitive performance) throughout the transplant course. Deficits can be most severe during the acute transplant period (i.e., 90 days after transplantation), when patients also typically experience elevated systemic levels of inflammation. Previous studies have identified inflammation as a likely mechanism underlying neurocognitive deficits, primarily in women with breast cancer; however, longitudinal studies have been limited. In this study, our aim was to evaluate the relationship between changes in systemic inflammation and changes in cognition from pre- to post-transplant in patients receiving allogeneic HCT. METHODS: Patients scheduled for allogeneic HCT (n=85) were assessed prior to HCT and 90 days after HCT. Biomarkers of inflammation included IL-6, sTNF-RII, CRP, and IL-1ra, which have been previously associated with neurocognitive deficits in cancer patients. Patients completed neuropsychological testing and self-report questionnaires. RESULTS: Mixed models demonstrated that from pre- to post-HCT, increases in IL-6 and sTNF-RII were associated with neurocognitive deficits, and decreases in CRP were associated with better neurocognitive performance. There were no significant associations between changes in inflammation and self-reported cognitive performance. CONCLUSIONS: Our findings are the first to our knowledge to report a robust relationship between increasing inflammation and neurocognitive deficits from pre- to post-HCT. Additional studies are needed to confirm these findings in a larger sample.

Correlates of anxiety and depression symptoms among patients and their family caregivers prior to allogeneic hematopoietic cell transplant for hematological malignancies

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

2019 Syrjala, Karen L, PhD Karen Syrjala

PURPOSE: Given the complexities and risks of allogeneic HCT, patients and their family caregivers may experience elevated psychological distress, including symptoms of anxiety and depression, in anticipation of the procedure. Patients and caregivers also bring with them their pre-HCT experiences of diagnosis, prior treatment, and associated burdens, thus potentially compounding their acute distress. Identification of clinical, psychosocial, and sociodemographic factors related to pre-HCT distress would allow targeting of patients and caregivers who may require assistance during the HCT process. METHODS: Consecutive patients (n = 111) and their caregivers (n = 110) completed measures of anxiety, depression, cancer distress, perceived threat, perceived control, self-efficacy, relationship quality, and physical quality of life in the week before HCT. Multivariate linear regression analysis was used to identify factors associated with patient and caregiver anxiety or depression, including disease type, donor type, and patient and caregiver sociodemographic, health-related, and psychosocial factors. RESULTS: Family caregivers had higher levels of anxiety and depression symptoms than patients. Thirty percent of caregivers vs. 17% of patients met criteria for clinically significant anxiety and a lesser amount (5% for both) met criteria for clinically significant depression. Patient anxiety was related to younger age (b = - 0.22, p = 0.005) and greater cancer-related distress (b = 0.59, p < 0.001), while caregiver anxiety was related to lower self-efficacy (b = - 0.19, p = 0.011) and greater cancer-related distress (b = 0.58, p < 0.001). Similarly, patient depression was related to lower perceived control (b = - 0.17, p = 0.050), greater cancer-related distress (b = 0.34, p = 0.005), and lower physical functioning (b = - 0.26, p = 0.008), while caregiver depression was related to greater cancer-related distress (b = 0.46, p < 0.001). CONCLUSIONS: Family caregivers may be more emotionally vulnerable than patients before HCT and in need of additional assistance. Cancer-related distress was the strongest correlate of anxiety and depression in both patients and caregivers, suggesting that distress related to their cancer experience and its consequences plays a major role in their emotional functioning prior to HCT.

Randomized controlled trial of individualized treatment summary and survivorship care plans for hematopoietic cell transplantation survivors


2019 Syrjala, Karen L, PhD Karen Syrjala

Survivorship care plans may facilitate long-term care for cancer survivors, but their effectiveness has not been established in hematopoietic cell transplantation recipients. We evaluated the impact of individualized survivorship care plans on patient-reported outcomes among transplant survivors. Adult (>/=18 years at transplant) survivors who were 1-5 years post-transplantation, proficient in English, and without relapse or secondary cancers were eligible for this multicenter randomized trial. Care plans were developed based on risk-factors and treatment exposures using patient data routinely submitted by transplant centers to the Center for International Blood and Marrow Transplant Research and published guidelines for long-term follow-up of transplant survivors. Phone surveys assessing patient-reported outcomes were conducted at baseline and 6-months. Primary endpoint was confidence in survivorship information, and secondary endpoints included cancer and treatment distress, knowledge of transplant exposures, health care utilization and health-related quality of life. Of 495 patients enrolled, 458 completed a baseline survey and were randomized (care plan=231, standard care=227); 200 (87%) and 199 (88%) completed the 6-month assessments, respectively. Patient characteristics were balanced in the two arms. Participants on care plan arm reported significantly lower distress scores at 6-months and an increase in the Mental Component Summary quality of life score assessed by the SF12 instrument. No effect was observed on the endpoint of confidence in survivorship information or other secondary outcomes. Provision of individualized survivorship care plans generated using registry data was associated with reduced distress and improved mental domain of quality of life among 1-5 year hematopoietic cell transplantation survivors. ( NCT02200133).

Long-term complications in adolescent and young adult leukemia survivors

Hematology / the Education Program of the American Society of Hematology. American Society of Hematology. Education Program

2018 Syrjala, Karen L, PhD Karen Syrjala

Adolescents and young adults (AYAs) with cancer, defined by the National Cancer Institute as having been diagnosed between the ages of 15 and 39 years old, have not benefited from the same improvements in quality of outcomes and survival that have been seen for individuals diagnosed in childhood or as older adults. Although is leukemia composed of a diverse group of diagnoses, leukemia AYA survivors share unique vulnerabilities with other AYA diagnostic groups. They will spend the majority of their lives as survivors, with clear evidence of adverse medical conditions, health care requirements, and social and psychological needs that differ not only from their peers but also, from the needs of other cancer survivor populations. Furthermore, they share a developmental stage of life in which careers, finances, and family concerns are uniquely impacted by the cancer diagnosis and treatment. Leukemia in AYAs typically presents with higher-risk biologic features, and treatment requires multiagent chemotherapy, including alkylating agents, anthracyclines, high-dose steroids, frequently intrathecal chemotherapy, and sometimes, cranial radiation. Thus, AYAs have significant risks for long-term complications, subsequent malignancies, and accelerated development of usual age-related comorbid conditions, such as cardiovascular disease and dyslipidemias. AYAs require specialized health care monitoring, surveillance for late effects, and periodic evaluation of psychosocial, health behavior, and life goal outcomes.

Tailoring a Survivorship Care Plan: Patient and Provider Preferences for Recipients of Hematopoietic Cell Transplantation

Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation

2019 Syrjala, Karen L, PhD Karen Syrjala

PURPOSE: This study aimed to develop a survivorship care plan (SCP) that could be individualized to facilitate long-term follow-up care of hematopoietic cell transplantation (HCT) survivors. METHODS: A sample SCP was developed that included two documents- a treatment summary and preventive care recommendations that combined data on treatment exposures routinely submitted by HCT centers to the Center for International Blood and Marrow Transplant Research (CIBMTR) with long-term follow-up guidelines. Focus groups were conducted by phone to characterize the critical patient-centered elements of the SCP. Focus group eligibility criteria included: 1) adult patients >1 year post-HCT and their caregivers (3 groups, n=22); 2) HCT physicians and advanced practice providers (APPs) (2 groups, n=14); 3) HCT nurses/social workers (4 groups, n=17), and 4) community health care professionals (3 groups, n=24). Transcripts were analyzed for saturation of key themes using NVivo 10 software. RESULTS: Patients/caregivers suggested combining the treatment summary and care guidelines into one document. They also requested sections on sexual and emotion health and the immune system. Providers wanted the treatment summary to focus only on what they absolutely must know. Themes were similar across healthcare professionals, though screening for psychosocial issues was emphasized more by the nurses/social workers. All preferred to receive the SCP electronically; however, hardcopy was considered necessary for some patients. All felt the SCP would facilitate appropriate post-HCT care. CONCLUSION: This study highlighted the need for an SCP instrument to facilitate HCT survivorship care. Furthermore, it demonstrated the feasibility and value of engaging HCT patients, caregivers and providers in developing a survivorship care tool. Their feedback was incorporated into a final SCP subsequently tested in a randomized trial.

Survivorship, Version 2.2018 Clinical Practice Guidelines in Oncology

Journal of the National Comprehensive Cancer Network : JNCCN

2018 Syrjala, Karen L, PhD Karen Syrjala

The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for common physical and psychosocial consequences of cancer and cancer treatment to help healthcare professionals who work with survivors of adultonset cancer in the posttreatment period. This portion of the guidelines describes recommendations regarding the management of anthracycline-induced cardiotoxicity and lymphedema. In addition, recommendations regarding immunizations and the prevention of infections in cancer survivors are included.

Damocles' syndrome revisited: Update on the fear of cancer recurrence in the complex world of today's treatments and survivorship.

Hematology/oncology and stem cell therapy

2018 Syrjala, Karen L, PhD Karen Syrjala

OBJECTIVE/BACKGROUND: Improvements in curative treatments for many types of cancer have emerged over the past several decades, resulting in a growing population of long-term cancer survivors - of both adult and childhood cancers. Despite this incredible medical achievement, long-term survivors of cancer face a unique fear: the fear of relapse. METHODS: We conducted a review of the literature for data on fear of relapse among cancer survivors. RESULTS: The fear of cancer recurrence is present in survivors of childhood and adult cancers as well as family members and often leads to psychological sequelae. CONCLUSION: Literature on the fear of cancer recurrence has begun to emerge. However, herein we provide a unique approach through the use of a metaphor: Cicero's story of Damocles' sword. We aim to outline the many fear-related and emotional challenges faced by cancer survivors with an extensive review of studies demonstrating such challenges.

Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation

Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation

2018 Syrjala, Karen L, PhD Karen Syrjala

The goal of patient-centered outcomes research (PCOR) is to help patients and those who care for them make informed decisions about healthcare. However, the clinical research enterprise has not involved patients, caregivers, and other non-providers routinely in the process of prioritizing, designing and conducting research in hematopoietic cell transplantation (HCT). To address this need, the National Marrow Donor Program (NMDP)/Be The Match((R)) engaged patients, caregivers, researchers and other key stakeholders in a two-year project with the goal of setting a PCOR agenda for the HCT community. Through a collaborative process, we identified six major areas of interest: 1) Patient, Caregiver and Family Education and Support; 2) Emotional, Cognitive and Social Health; 3) Physical Health and Fatigue; 4) Sexual Health and Relationships; 5) Financial Burden; and 6) Models of Survivorship Care Delivery. We then organized into multi-stakeholder Working Groups to identify gaps in knowledge and make priority recommendations for critical research to fill those gaps. Gaps varied by Working Group, but all noted that a historical lack of consistency in measures utilized and patient populations made it difficult to compare outcomes across studies and urged investigators to incorporate uniform measures and homogenous patient groups in future research. Some groups advised that additional pre-emptory work is needed before conducting prospective interventional trials, whereas others felt ready to proceed with comparative clinical effectiveness research studies. This report presents the results of this major initiative, and makes recommendations by Working Group on priority questions for PCOR in HCT.

Opportunities for improving oncology care

The Lancet. Oncology

2018 Syrjala, Karen L, PhD Karen Syrjala