Incorporating the Patient’s Voice in the Continuum of Care
Bradford R. Hirsch and Amy P. Abernethy
Building the Palliative Care Evidence Base: Lessons From a Randomized Controlled Trial of Oxygen vs Room Air for Refractory Dyspnea
Thomas W. LeBlanc and Amy P. Abernethy
Palliative care is increasingly seen as a standard component of high-quality comprehensive cancer care. However, several challenges remain to its widespread integration into clinical oncology practice, including workforce problems, reimbursement concerns, and a fledgling evidence base. This article discusses issues surrounding evidence base development in palliative cancer care, using the example of a recently published randomized controlled trial of oxygen versus room air. The Oxygen Trial randomized patients with refractory dyspnea and adequate Pao2 to oxygen or room air, administered via nasal cannula. Both groups experienced improvements in self-rated dyspnea scores, but no statistical differences were seen between intervention arms. These results suggest that supplementary oxygen is often unnecessary in the palliative setting, and that room air is similarly efficacious. This example highlights the importance and need for ongoing development of the evidence base in palliative medicine. The Palliative Care Research Cooperative (PCRC) is a novel National Institute of Nursing Research-funded research infrastructure that seeks to expand the palliative care evidence base. Its first multisite trial was recently completed, assessing the pragmatic question of whether statin medications can be safely discontinued in end-of-life settings. The PCRC will be a vehicle through which a high-quality evidence base will continue to expand and develop. Such ongoing research efforts are needed to inform and improve palliative care practice.
Emerging Issues and Opportunities in Health Information Technology
Elizabeth A. Nardi, Lisa Korin Lentz, Katherine Winckworth-Prejsnar, Amy P. Abernethy, and Robert W. Carlson
When used effectively, health information technology (HIT) can transform clinical care and contribute to new research discoveries. Despite advances in HIT and increased electronic health record adoption, many challenges to optimal use, interoperability, and data sharing exist. Data standardization across systems is limited, and scanned medical note documents result in unstructured data that make reporting on quality measures for reimbursement burdensome. Different policies and initiatives, including the Health Information Technology for Economic and Clinical Health Act, the Medicare Access and CHIP Reauthorization Act, and the National Cancer Moonshot initiative, among others, all recognize the impact that HIT can have on cancer care. Given the growing role HIT plays in health care, it is vital to have effective and efficient HIT systems that can exchange information, collect credible data that is analyzable at the point of care, and improves the patient-provider relationship. In June 2016, NCCN hosted the Emerging Issues and Opportunities in Health Information Technology Policy Summit. The summit addressed challenges, issues, and opportunities in HIT as they relate to cancer care. Keynote presentations and panelists discussed moving beyond Meaningful Use, HIT readiness to support and report on quality care, the role of HIT in precision medicine, the role of HIT in the National Cancer Moonshot initiative, and leveraging HIT to improve quality of clinical care.
Patient-Reported Distress in Myelodysplastic Syndromes and Its Association With Clinical Outcomes: A Retrospective Cohort Study
Jesse D. Troy, Carlos M. de Castro, Mary Ruth Pupa, Greg P. Samsa, Amy P. Abernethy, and Thomas W. LeBlanc
Background: NCCN defines distress as a multifactorial, unpleasant emotional experience of a psychological nature that may interfere with patients' ability to cope with cancer symptoms and treatment. Patients with myelodysplastic syndromes (MDS) are at risk for distress due to the largely incurable nature of this hematopoietic malignancy and its symptom burden, yet associations with clinical outcomes are unknown. Methods: We retrospectively reviewed patient-reported distress data from adult ambulatory patients with MDS visiting a single, tertiary care medical center from July 2013 to September 2015. Demographic, diagnostic, treatment, and comorbidity information were abstracted from records along with NCCN Distress Thermometer (DT) and Problem List (PL) scores. Survival was analyzed using the Kaplan-Meier method and Cox proportional hazards regression. Results: We abstracted 376 DT scores (median, 1; range, 0–10) from 606 visits and 110 patients (median, 2 DT scores/patient; range, 1–16). NCCN Guidelines suggest that patients with DT scores ≥4 should be evaluated for referral to specialty services to address unmet needs. A total of 54 patients (49%) had at least 1 DT score ≥4 and 20 (18%) had 2 or more DT scores ≥4; 98 patients (89.1%) reported 1,379 problems during 23,613 person-days of follow-up (median, 4 problems/patient/visit; range, 1–23). The 5 most frequently reported problems were fatigue (181 times; 78 patients), pain (95 times; 46 patients), worry (80 times; 45 patients), sleep (78 times; 41 patients), and tingling hands/feet (68 times; 33 patients). After adjustment for risk stratification at diagnosis, a single point increase on the DT was associated with an increased risk of death (hazard ratio, 1.18; 95% CI, 1.01–1.36). Conclusions: Patients with MDS experience a high burden of distress, and patient-reported distress is associated with clinical outcomes. Distress should be further studied as a prognostic variable and a marker of unmet needs in MDS.
Fatigue is the Most Important Symptom for Advanced Cancer Patients Who Have Had Chemotherapy
Zeeshan Butt, Sarah K. Rosenbloom, Amy P. Abernethy, Jennifer L. Beaumont, Diane Paul, Debra Hampton, Paul B. Jacobsen, Karen L. Syrjala, Jamie H. Von Roenn, and David Cella
Cancer fatigue has been defined and described as an important problem. However, few studies have assessed the relative importance of fatigue compared with other patient symptoms and concerns. To explore this issue, the authors surveyed 534 patients and 91 physician experts from 5 NCCN member institutions and community support agencies. Specifically, they asked patients with advanced bladder, brain, breast, colorectal, head and neck, hepatobiliary/pancreatic, kidney, lung, ovarian, or prostate cancer or lymphoma about their “most important symptoms or concerns to monitor.” Across the entire sample, and individually for patients with 9 cancer types, fatigue emerged as the top-ranked symptom. Fatigue was also ranked most important among patients with 10 of 11 cancer types when asked to rank lists of common concerns. Patient fatigue ratings were most strongly associated with malaise (r = 0.50) and difficulties with activities of daily living, pain, and quality of life. Expert ratings of how much fatigue is attributable to disease versus treatment mostly suggested that both play an important role, with disease-related factors predominant in hepatobiliary and lung cancer, and treatment-related factors playing a stronger role in head and neck cancer.
Development and Validation of 11 Symptom Indexes to Evaluate Response to Chemotherapy for Advanced Cancer
David Cella, Sarah K. Rosenbloom, Jennifer L. Beaumont, Susan E. Yount, Diane Paul, Debra Hampton, Amy P. Abernethy, Paul B. Jacobsen, Karen Syrjala, and Jamie H. Von Roenn
Recent guidance from the FDA discusses patient-reported outcomes as end points in clinical trials. Using methods consistent with this guidance, the authors developed symptom indexes for patients with advanced cancer. Input on the most important symptoms was obtained from 533 patients recruited from NCCN Member Institutions and 4 nonprofit social service organizations. Diagnoses included bladder, brain, breast, colorectal, head and neck, hepatobiliary/pancreatic, kidney, lung, ovarian, and prostate cancers and lymphoma. Physician experts in each of these diseases were also surveyed to differentiate symptoms that were predominantly disease-based from those that were predominantly treatment-induced. Results are evaluated alongside previously published indexes for 9 of these 11 advanced cancers that were created based on expert provider surveys, also implemented at NCCN Member Institutions. Final results are 11 symptom indexes that reflect the highest priorities of people affected by these 11 advanced cancers and the experienced perspective of the people who provide their medical treatment. Beyond the clinical value of such indexes, they may also contribute significantly to satisfying regulatory requirements for a standardized tool to evaluate drug efficacy with respect to symptomatology.