Patterns of Care
The National Cancer Institute’s (NCI) Division of Cancer Control and Population Sciences (DCCPS) has, since its creation, fostered research into the dissemination of state-of-the-art cancer-related therapies in the community. Population-based data resources supported by DCCPS have allowed researchers to examine variations in the patterns and quality of care delivered in diverse health care settings, identify populations at risk for receiving suboptimal care, and examine multilevel factors influencing disparities in the delivery of effective and timely care.
These three areas—patterns of care, quality of care, and disparities in care—are deeply interrelated and cannot be examined in isolation. Therefore, although this review of current and potential DCCPS research focuses on patterns of care research, it also highlights research of relevance to the other two areas. Additional information about DCCPS research in quality of care issues, especially Patient-centered Communication and Care Coordination, is presented in the Patient-centered Communication and Care Coordination Research section.
While DCCPS has actively pursued research in patterns of care, gaps in research and knowledge persist. The disparity by racial/ethnic groups and age for those who receive guideline-consistent therapy and those who do not continues to be a problem for certain cancers. This likely contributes to, but does not fully explain, the survival disparities that exist by racial/ethnic and age groups. Insurance coverage also influences the therapies provided to patients, but precisely how this influences the selection of therapy is not well understood. The discoveries of new assays to direct treatment continue to expand our understanding of cancer progression, and the application of novel molecularly targeted therapeutic therapies has the potential to improve cancer outcomes. However, we still have much to learn about how these new assays are disseminated into community practice and how their results are applied to the selection of therapies, including novel agents.
Patterns of Care in Breast Cancer
Does compliance with recommended therapy vary by racial/ethnic groups? Are there health facility or family characteristics that influence compliance with and completion of treatment? Are the side effect profiles different?
Do the characteristics of the physicians consulted differ, and if so, how do these differences influence treatment? How do recommendations for therapy vary by physician and patient characteristics?
What are the characteristics of the facilities available to African American and White patients with breast cancer? Are the same facilities available to both populations of patients? Do they choose different facilities, and if so, why?
What are the relationships between insurance type or changes in insurance and timely access to care and treatment?
What are the differences in delays between symptoms, mammograms, surgery or chemotherapy? How do specific factors influence these delays? Do any family or personal issues interfere with or encourage timely therapy, such as child care, transportation (including distance, location and travel time), employment, or support from a spouse/partner or family?
Patterns of Care by Age
How do age and functional status influence treatment selection in the elderly? Does age influence treatment irrespective of functional status? Is functional status more important with the relatively young and age more important with the oldest patients? How do comorbidities influence treatment by age?
What are the patient and physician factors that influence treatment decisions for primary treatment and for progression or recurrence by age? Are older patients offered therapy and what are the reasons they may refuse? Does the aggressiveness of therapy decrease with age? Do caregivers describe the benefits of therapy as being less for older patients? How do family members and social support influence decisions about therapies that older patients receive?
What are the complications related to treatments for cancer in the elderly population, such as side effects, dose reductions, failure to complete therapy regimens, re-hospitalization? How do these vary with increasing age?
Are markers that predict response or recurrence being analyzed for this population? Are novel therapies being given, and how do these vary by age and functional status? What is the lag time for dissemination of novel agents in older compared to younger populations with cancer?
How do geographic variables, such as urban versus rural residence, area of the United States, and high-socioeconomic status area versus low-socioeconomic status area, influence patterns of care for older patients?
Patterns of Care by Insurance Status
How does insurance status influence therapy? Do certain types of insurance include restrictions on therapies? Do health facilities refuse some types of insurance?
Are the referrals to specialized care related to insurance status? Do the characteristics of the referral physician differ by insurance status? What are the characteristics of physicians who accept or refuse particular types of insurance?
Is insurance a proxy for some other factors that are influencing care, such as family resources, employment status, or wealth?
Why does insurance influence therapy differently by racial/ethnic groups? Do different racial/ethnic groups select different therapies regardless of insurance type? Do different racial/ethnic groups select different physicians regardless of insurance type?
Patterns of Care in Molecularly Targeted Therapies and Predictive Biomarkers
How can we collect utilization data to improve the evidence base for genomic cancer medicine technologies, such as molecularly targeted cancer therapies and genomic testing of predictive biomarkers?
Which physicians and types of patients are using molecularly targeted treatments and predictive biomarkers? How are cancer predictive biomarkers influencing choice of treatment?
What beneficial and adverse health outcomes are associated with the use of cancer predictive biomarkers and molecularly targeted treatments? What are the unintended consequences of these agents?
Patterns of Care and Rare Cancers
What proportions of patients with rare cancers receive only palliative care? How do patterns of care vary by location or stage of the tumor?
Which chemotherapeutic agents are being given? How does surgical specialty influence aggressiveness of the surgery?
What is the decision process for selecting adjuvant chemotherapies? What treatment options are presented to patients? Are patients offered clinical trials? What are the characteristics of patients who refuse treatment and/or referral?
Are patients with rare cancers being treated in “centers of excellence,” comprehensive cancer centers, or in community hospitals? What are the characteristics of patients being referred to “centers of excellence,” comprehensive cancer centers, or not being referred? What are the referral patterns? Does therapy vary by treating facility? Does survival vary by treating facility?
Do therapies vary by physician characteristics? Are physicians with subspecialty training or physicians who treat larger numbers of patients with rare diseases more aggressive with surgery and chemotherapies than are other oncologists?