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Published in final edited form as: J Geriatr Oncol. 2019 Jul 17;11(2):350–354. doi: 10.1016/j.jgo.2019.07.012

Geriatric oncology health services research: Cancer and Aging Research Group Infrastructure Core

Melisa L Wong a,*, Stuart M Lichtman b, Gary R Morrow c, John Simmons d, Tomma Hargraves d, Cary P Gross e, Jennifer L Lund f, Lisa M Lowenstein g, Louise C Walter h, Cara L McDermott i, Supriya G Mohile c, Harvey Jay Cohen j
PMCID: PMC6980419  NIHMSID: NIHMS1535054  PMID: 31326392

Introduction

Founded by the late Dr. Arti Hurria, the Cancer and Aging Research Group (CARG) is a collaborative, interdisciplinary team of investigators dedicated to improving the care of older adults with cancer through research, advocacy, and other scholarly initiatives.1 As part of the CARG National Institute on Aging R21/R33 infrastructure grant to harness the available expertise and prioritize the development of high-impact research, the Health Services Research (HSR) Core was developed to foster and advance HSR in geriatric oncology. The mission of the HSR Core is to support clinical investigators to design and conduct high-quality HSR focused on older adults with cancer and their caregivers including patterns of care, comparative effectiveness, and care delivery. At the first R21/R33 conference held at City of Hope in October 2018, Dr. Harvey Jay Cohen (Chair, CARG Oversight Board and HSR Core) led the development of this Core. In this perspective paper, we present a review of HSR in geriatric oncology to build a foundation for the Core rationale; proposed Core function, workflow, policies, and procedures; anticipated interactions with other CARG Cores; and proposed plans for sustainability.

Geriatric Oncology HSR and Core Rationale

HSR remains an important approach to answer clinically meaningful cancer and aging research questions to improve the quality of care for older adults. The Institute of Medicine (now the National Academy of Medicine) defines HSR as “a multidisciplinary field of inquiry, both basic and applied, that examines the use, costs, quality, accessibility, delivery, organization, financing, and outcomes of health care services to increase knowledge and understand the structure, processes, and effects of health services for individuals and populations.”2 Because older adults remain underrepresented in cancer clinical trials3–5 despite ongoing efforts to improve representation,6–11 HSR is especially critical to understand cancer treatment effectiveness, safety and tolerability, and impact on patient-centered outcomes among older adults. Furthermore, sparse evidence exists to inform how to best deliver appropriate goal-concordant cancer care for older adults.

HSR in geriatric oncology can be challenging as many large cancer data sources (e.g., cancer registries) do not contain detailed geriatric characteristics (e.g., functional status, cognition) and many large aging research data sources (e.g., The Health and Retirement Study12) do not contain detailed cancer characteristics (e.g., stage, treatment). HSR expertise in linking and analyzing these large data sources plus geriatric oncology expertise in study design and selection of appropriate outcomes for older adults are necessary to successfully conduct cancer and aging HSR. For example, frailty indices based on administrative claims and diagnostic codes have been developed to estimate frailty when direct measures are not available.13–19 Application of these claims-based frailty indices to geriatric oncology research, and understanding which index may be most appropriate for a specific population of interest,20 can enhance the scope of research questions that can be answered with administrative data.

Measurement of comorbidity in large cancer registries represents another geriatric oncology HSR challenge. For example, the National Cancer Database (NCDB)21–23 utilizes the Charlson-Deyo Comorbiditiy Index24,25 mapped from up to ten diagnostic codes from hospital discharge abstracts or billing face sheets. The NCDB’s approach has been shown to underestimate comorbidity in patients with surgically resected breast, colorectal, or lung cancer.26 Therefore, expertise in understanding the strengths and limitations of specific data elements is essential in geriatric oncology HSR. To address these challenges, the HSR Core will frequently partner with the Biostatistics, Epidemiology, and Research Design Core since HSR study design is informed by statistical analysis and vice versa.

Available data sources for geriatric oncology HSR include cancer registries (e.g., NCDB; 21–23 National Cancer Institute Surveillance, Epidemiology, and End Results [NCI SEER];27,28 Veterans Administration Central Cancer Registry [VACCR]29), administrative datasets (e.g., Nationwide Inpatient Sample30), large existing cohort studies (e.g., Cancer Care Outcomes Research and Surveillance Consortium [CanCORS]31), and electronic health record (EHR) and insurance data resources32 (e.g., American Society of Clinical Oncology CancerLinQ,33 Flatiron Health,34 iKnowMed,35 OptumLabs36). SEER data can be linked to Medicare claims data,37,38 the Medicare Health Outcomes Survey (MHOS),39 and the Consumer Assessment of Healthcare Providers and Systems (CAHPS)40. The SEER-MHOS database, which includes functional status, quality of life (QOL), and symptoms, provides a rich opportunity to investigate clinically meaningful research questions such as depressive symptoms in older colorectal cancer survivors.41 The SEER-CAHPS database allows for evaluation of factors associated with the patient experience of cancer care among older adults.42 Additionally, cohort studies with detailed geriatric assessment (GA) can be linked to administrative, EHR, cancer registry, or other data sources to develop an enriched combined datasource.43 Examples of geriatric oncology HSR projects are described below to highlight different types of studies for potential future HSR Core consultation.

Patterns of Care and Patient Outcomes

Patterns of care and patient outcomes among older adults with cancer have been the focus of many geriatric oncology HSR studies,44–46 which can identify both undertreatment and overtreatment as well as health disparities. The risk of overtreatment is especially pertinent for older adults with cancer, who may have limited life expectancies from comorbidities,47,48 increased risk of toxicity49,50 that may alter the ratio of treatment benefits and harms, or different care preferences that prioritize maintenance of function or cognition.51 The association of age and comorbidity on first-line treatment of non-small cell lung cancer (NSCLC) among older veterans was examined in the VACCR52 and on treatment of NSCLC recurrence in the NCDB.53 Using the Nationwide Inpatient Sample,30 a retrospective cohort study of octogenarians undergoing high-risk cancer surgery found that operative mortality among octogenarians was significantly higher than among patients age 65–69.54 Octogenarians were also less likely to be discharged to home after their surgery.54

Understanding health disparities at the intersection of age and race is an active area of geriatric oncology HSR.55–58 In a study of older men with prostate cancer using the SEER-Medicare dataset, racial disparities in treatment were assessed across strata of clinical benefit, which incorporated tumor risk and life expectancy.59 Racial disparities were largest in the group of men with the highest clinical benefit, suggesting undertreatment among black men. However, the study also identified overtreatment among a large subgroup of both black and white men with low clinical benefit.59

Geriatric oncology HSR spans the entire cancer care continuum, with patterns of care at the end of life representing another important area of investigation.60–63 For example, using the SEER-Medicare dataset, end-of-life healthcare utilization has been shown to vary among older adults with a pre-cancer diagnosis of depression compared with a post-cancer diagnosis of depression.64 However, robust linkages to EHR data are needed to determine if care at the end of life is aligned with patients’ and families’ goals and values.

Comparative Effectiveness and Safety

Comparing the real-world effectiveness of cancer therapies among older adults is a vital area of cancer and aging HSR.65–70 Clinical trials may not directly compare treatments of interest and trial efficacy may not translate to effectiveness, particularly because older adults and patients with poor performance status are often excluded. For example, SEER-Medicare was used to evaluate survival among adults age ≥65 with advanced pancreatic or lung cancer compared with similarly treated clinical trial enrollees.71 Similarly, a study of older adults with stage I NSCLC in SEER-Medicare found that stereotactic body radiation was associated with lower mortality at three months compared with surgery but higher mortality at 24 months, suggesting a relative benefit from surgery in older patients with longer life expectancies.72

To evaluate cancer treatment safety in older adults, SEER-Medicare has been utilized to determine rates of toxicity require hospitalization among adults age ≥70 with stage III or IV NSCLC.73 Toxicity-related hospitalizations were most common among patients with stage III NSCLC receiving chemoradiation (39%) and patients with stage IV disease treated with chemotherapy (32%).73 Furthermore, SEER-Medicare can be leveraged to evaluate geriatric-specific treatment safety outcomes such as function-related adverse events, which incorporates claims for durable medical equipment and skilled care.74

Care Delivery

Care delivery research75,76 for older adults with cancer is an active area of geriatric oncology HSR with multiple ongoing trials. The foundation for these care delivery trials was originally established by the development of inpatient GA and management, which improved pain and mental health among older adults with cancer.77 Dr. Hurria led the development and implementation of GA into cancer cooperative group clinical trials.78,79 Geriatric assessment was then evaluated in a multicenter CARG cohort study and shown to predict chemotherapy toxicity in older adults better than traditional Karnofsky Performance Status.49,50

Care delivery trials are now testing whether GA-driven interventions improve a wide array of patient outcomes including toxicity, functional status, communication, QOL, and healthcare utilization. In the U.S. through the University of Rochester NCI National Community Oncology Research Program (NCORP), a cluster randomized clinical trial of GA with a summary provided to oncologists compared with usual care (no GA summary) found that providing a GA summary to oncologists increased the number and quality of discussions about age-related concerns and improved patient satisfaction.80 At City of Hope, Dr. Hurria conducted a multisite randomized trial of GA-driven treatment versus standard of care with the primary outcome of grade 3–5 adverse events during chemotherapy and secondary outcomes of hospitalizations during chemotherapy, change in functional status, and change in QOL.81 In France82 and Canada,83,84 similar randomized trials of GA-driven treatment are ongoing. Through the Alliance for Clinical Trials in Oncology NCORP, a multicenter cluster randomized trial was recently launched to test the OPTI-Surg toolkit, a strategy of frailty screening to efficiently identify preoperative older patients with vulnerabilities followed by targeted interventions with the goal of improving outcomes (e.g., functional status) following major cancer surgery.85 The OPTI-Surg trial will compare usual care with two experimental arms: OPTI-Surg training and informational materials versus OPTI-Surg training, informational materials, plus individualized practice-level implementation coaching.

Core function, workflow, and policies and procedures

We propose that the HSR Core function as a consultation service for junior geriatric oncology investigators and senior investigators across the U.S. who are new to cancer and aging. Expertise for HSR Core consultations will initially start with a central group of geriatric oncology HSR investigators, with later refinement based on early consultation experiences and needs. Requests for HSR Core consultations will be submitted online through a central CARG intake form on mycarg.org and triaged to the appropriate Core and expert within each Core. Core services will initially be limited to CARG members and expanded as resources allow. Consultations may take the form of brief 30-minute consults for specific well-defined questions or more in-depth consults for complex study design questions. Investigators who utilize the Core will be asked to provide regular updates on the progress of their research and any resulting grants or publications. All publications that benefit from a HSR Core consultation should acknowledge the CARG R21/R33 grant. Short-term goals include testing Core functions by supporting early CARG pilot studies and identifying additional areas of Core expertise needed.

Long-term goals for the HSR Core include development of an inventory of existing datasets used in geriatric oncology HSR and de-identified pilot data to support grant proposals with collated support documents including data dictionaries, data linkage details, and example studies from each data source. The development of a data sharing agreement for geriatric oncology pilot data would facilitate sharing these valuable resources. We also aim to advance the quality of real-world data for older adults by advocating for the inclusion of standardized geriatric-specific domains such as comorbidities, physical function, and cognition in cancer registries, EHRs, and minimum data elements.

Interaction with other CARG Cores

Geriatric oncology HSR supported by the HSR Core may require the services of the Biostatistics, Epidemiology, and Research Design Core to assist with statistical analysis of large datasets. The HSR Core may also lead to the development of an intervention study to test a new model of care to address cancer symptoms in older adults or an intervention to reduce a disparity identified in a secondary analysis, thereby requiring the expertise of the Behavioral, Psychological, and Supportive Care Interventions Core.

Sustainability

Initially, HSR Core consultations will be provided by a central team of volunteer investigators as we gauge the HSR needs of the CARG research community. HSR Core expert volunteers will serve on a rotating basis with additional ad hoc experts based on specific consult needs. However, as Core functions grow and expand to serve more investigators, we propose a two-tiered system where brief 30-minute initial consultations are complimentary and longer in-depth follow-up consultations are supported by hourly recharge fees, which can be included in grant proposal budgets and/or supported by the investigator’s discretionary funds if available.

Potential pitfalls to HSR Core sustainability include difficulty recruiting and retaining the necessary expertise to provide in-depth consultations to CARG members. Additionally, the costs associated with acquiring and linking multiple large datasets will likely require external research funding. The HSR Core can assist with study design for grant applications to support these efforts.

Conclusion

In summary, the HSR Core aims to support high quality geriatric oncology HSR nationally, especially among investigators new to cancer and aging or this research methodology. Our long-term goal is to help design and conduct research to improve the care of older adults with cancer and lead to policy changes to support implementation of evidence-based interventions. Dr. Hurria’s dream was that “one day, all older adults with cancer will receive personalized tailored care, utilizing evidence based medicine with a multidisciplinary approach” (Dr. Hurria’s investiture presentation as the George Tsai Family Chair in Geriatric Oncology at City of Hope National Medical Center, August 2017). The HSR supported by this CARG Core will help expand the evidence base for this personalized tailored care for older adults with cancer.

Acknowledgements

This perspective paper is supported by the National Institute on Aging (NIA; R21/R33AG059206) and the National Cancer Institute (NCI; UG1CA189961, R25CA102618). MLW is supported by the NIA (R03AG056439, P30AG044281), National Center for Advancing Translational Sciences (KL2TR001870), and the University of California, San Francisco Helen Diller Family Comprehensive Cancer Center. SML is supported by the NCI Cancer Center Support Grant (P30CA008748). LML is supported by the American Cancer Society (MRSG-18–225-01). CLM is supported by the National Heart, Lung, and Blood Institute (K12HL137940). SGM is supported by the NIA (K24AG056589). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflicts of Interest

MLW, CPG, JLL, and CLM have reported conflicts of interest outside of the submitted work. MLW reported that an immediate family member is an employee of Genentech with stock ownership. CPG reported travel funding from Flatiron Health and research funding from Johnson & Johnson and Pfizer through the National Comprehensive Cancer Network. JLL reported that an immediate family member is an employee of GlaxoSmithKline. CLM has served as a research consultant for the Biologics and Biosimilars Collective Intelligence Consortium. The remaining authors have no conflicts to report.

Footnotes

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