The NCl Community Cancer Center Program Patients Reported Symptom Surveillance and Disparities Study
- Cancer and its treatment lead to symptoms and side effects. Pain, fatigue, and
emotional distress are three of the most common and distressing symptoms. Patient
report is the gold standard for assessing these symptoms and is critical to
- Symptoms are often under-reported or under-treated leading to impairments in quality of
life, functioning, and treatment adherence. Factors contributing to
under-reporting/treatment occur within patients (e.g., fear of addiction to pain meds),
providers (e.g., lack of training), and the healthcare system (e.g., under-insurance).
- A limited number of studies suggest that the burden symptoms falls unevenly on certain
racial/ethnic, socioeconomic status (SES), and insurance status groups.
- Despite the importance of symptoms in cancer care, there is no method for
systematically collecting patient reported data at institutional or national levels.
Such a system could identify at risk groups, inform intervention, and ultimately
improve quality of care.
- This study uses existing resources to design a cost-effective symptom surveillance
system. The NCI Community Cancer Center Program (NCCCP) provides the infrastructure for
efficiently conducting a multi-site pilot in a real-world setting with a diverse sample
of patients. The Commission on Cancer's Rapid Quality Reporting System (RQRS) will
automate sampling to minimize burden on the cancer center's staff, facilitate data
collection during or soon after treatment, and protect patients' personal identifiers.
The survey instrument is based upon previously validated measures.
- To pilot a method for collecting patient reports of symptom-related experiences that
could be used for surveillance at institutional and, in the future, population levels.
- To investigate disparities in symptom burden and management between racial/ethnic, SES,
and health insurance status groups.
- To pilot the use of patient-reported symptom data for quality improvement of symptom
management at participating cancer centers.
- Diagnosed with Stage I-III breast or colon cancer as first primary cancer between
February 2011 and January 2013
- Age of 21 years or older
- Received cancer care from one of 17 participating NCCCP Cancer Centers.
- This cross-sectional survey will collect reports of symptoms and related experiences
from patients 3-12 months after cancer diagnosis via mailed questionnaire. A
methodological experiment will randomize patients after the second mailing to compare
telephone follow-up to a third mailing. Data on cost and Cancer Center staff time will
be collected to provide scalable estimates of overall cost and examine
cost-effectiveness of telephone follow-up.
- The study will provide prevalence estimates for various symptoms and symptom management
items. More complex, model-based statistics will be used to investigate symptom
disparities (Aim 2). For these models, outcomes will be either continuous (e.g., pain
severity) or ordinal (e.g., symptom management items) and will be analyzed using
Generalized Linear Mixed Models (GLMM) to take into account the two-level structure of
the data (patients nested within Cancer Centers). We expect to enroll 2,550 patients.
To pilot a method for collecting patient reports of symptom related experiences that could be used for the surveillance symptoms at institutional and in the future population levels.
Kathleen Castro, R.N.
National Cancer Institute (NCI)
United States: Federal Government
|Lehigh Valley Hospital||Allentown, Pennsylvania 18103|
|Hartford Hospital||Hartford, Connecticut 06102-5037|
|Penrose Cancer Center||Colorado Springs, Colorado 80933|
|Northside Hospital||Atlanta, Georgia 30342|
|Christiana Care Health Services||Newark, Delaware 19713|
|St. Joseph's/Candler Health System||Savannah, Georgia 31405|
|Sanford Health||Sioux Falls, South Dakota 57104|
|St. Joseph's Orange||Orange, California 92868|
|Our Lady of the Lake/ Mary Bird Perkins||Baton Rouge, Louisiana 70806|
|The Cancer Institute Catholic Health Initiatives||Towson, Maryland 21204|
|Billings Clinical Cancer Center||Billings, Montana|
|CHI, St. Fancis||Grand Island, Nebraska 68803|
|CHI, Good Samaritan||Kearney, Nebraska|
|Spartanburg Regional Hospital||Spartanburg, South Carolina 29303|
|Ascension Health Systems||Mikwaukee, Wisconsin 53211|