Table 2:
Surveillance system attributes evaluated across the potential national surveillance data sources
Attribute | NHIS | MEPS | NHANES | NAMCS | NEHRS | NHCS | EHRs |
---|---|---|---|---|---|---|---|
Usefulness | Has already provided prevalence estimates and baseline data for surveillance and HP2030. | MEPS is the US standard for estimating nationally representative healthcare expenditure and therefore ideal data source for estimating costs of high-impact pain. Difficult to assess chronic pain without linking to NHIS. | Generic pain questions have not been administered since the 2011–2012 survey. Unable to assess chronic pain or high-impact chronic pain. | Useful for surveillance of pain issues, such as pain management, for those using the healthcare system. | This is a physician survey, so pain questions are not reported at the individual-level. The survey is useful for assessing pain management and prescribing trends in the health care setting. |
Useful to assess opioid- and pain-related hospital visits, potentially as a result of differences in pain management practices. | The nonexistence of data standards for electronic health record or medical claims data make it difficult to perform national chronic pain surveillance at this time. |
Simplicity | Uses existing data collection infrastructure and standardized survey methodology. Data can be easily obtained from survey website and interactive data tool46. | Uses existing data collection infrastructure and standardized survey methodology, but its complexity, especially when linking to NHIS, is substantial. | Uses existing data collection infrastructure and standardized survey methodology. Data can be easily obtained from survey website. | Uses existing data collection infrastructure and standardized survey methodology. Data can be easily obtained from survey website. | Uses existing data collection infrastructure and standardized survey methodology. Data can be easily obtained from survey website. | Uses existing data collection infrastructure and standardized survey methodology. Data can be obtained from NCHS Research Data Center. | The fragmented nature of the US healthcare system makes the use of EHRs for national surveillance complex. |
Flexibility | Moderately flexible. With some lead time the ability exists to add sponsored emerging health topics as needed; many additional pain questions were added for 2019 and later surveys. | Unknown. | Moderately flexible. With lead time the ability exists to add sponsored emerging health topics as needed. | Administers standard questions, survey has not been redesigned recently. Limited ability to add emerging health topics. | Moderately flexible. With lead time the ability exists to add sponsored emerging health topics as needed. | Moderately flexible. Since survey includes a short questionnaire and submission of all diagnosis codes, NHCS can quickly adapt to changing information needs. | Difficult to add questions in EHRs nationally, differences in EHR vendors complicate the process. |
Data quality | Chronic pain and highimpact chronic pain questions were developed and cognitively tested prior to being added to the survey. Potential for recall bias. | Pain interference question has been shown to discriminate across different levels of health status and health care utilization. Potential for recall bias. | Prescription medication data obtained by NHANES is high quality based on collection procedures. | Validation of diagnosis codes for assessment of persistent, nonmalignant pain has not been performed. | The frequency with which physicians prescribe controlled substances in this questionnaire has not be validated. | Validation of diagnosis codes for assessment of persistent, nonmalignant pain has not been performed. | Poor data quality, issues with inaccuracies, missingness and no data standardization specific to chronic pain surveillance. |
Acceptability | Question refusal rate for CP and HICP are low, only 0.05% and 0.01% respectively, in 2016. Total household response rate was 67.9% in 2016. | Survey response rate for the public use MEPS files was 46.0% in 2016. | Acceptability is declining, in the 2015–2016 survey 61.3% of persons asked to do the interview completed the survey. | Participation rates for eligible physicians who completed at least one patient record form was 39.3% in 2016. | The overall unweighted response rate of the 2015 survey was 51.9%. | ~20% of the 581 hospitals sampled during the 2013–2016 survey years participated. | Acceptability of EHRs in health care setting across the U.S. is growing. |
Representa tiveness | National; representative of the U.S. civilian, noninstitutionalized population. Does not include individuals in institutional care facilities, therefore may underrepresent older population. | Derives from prior year’s NHIS; National; representative of the U.S. civilian, noninstitutionalized population. Does not include individuals in institutional care facilities, therefore may underrepresent older population. |
National; representative of the U.S. civilian noninstitutionalized population. Does not include individuals in institutional care facilities, therefore may underrepresent older population. | National; representative of physician visits in the U.S. | Survey data are nationally representative of physicians practicing in U.S. health care settings. | Response rates are not high enough to produce nationally representative data. | Representative of individuals who seek health care within specific EHR catchment areas; not nationally representative. |
Timeliness | Survey conducted annually; survey data are made available ~nine months after survey completion. | Survey conducted annually and begins one year after NHIS completion. Survey data are made available ~nine months after survey completion. | Survey data are released biennially; no generic pain questions administered since the 2011–2012 survey. | Survey conducted annually; survey data are not available for use in a timely manner | Survey conducted annually; survey data are made available ~12–18 months after survey completion. | Survey conducted annually; survey data are made available ~two years after survey completion. | Rapid, EHR data is available in near real-time. |
Stability | Established in 1957 and repeated annually since. Well-accepted standard approaches to the survey and data preparation exist. | Established in 1997 and has been repeated annually since. Survey data are highly consistent over time, however there are redesigns that may affect comparability of data. | Established in 1999 and has been repeated biennially since. Pain questions are intermittently administered. | Established in 1973. Survey is now annual and has remained stable since 2006 when a subset of community health centers was added. There was a transition from ICD-9 to ICD-10 codes in 2016. | Established in 2008. Became an independent survey in 2012 and has been administered annually since. | Established in 2013. Survey continues to be administered regularly. There was a transition from ICD-9 to ICD-10 codes around 2015. | EHRs are continually evolving and there is now widespread adoption. There was a transition from ICD-9 to ICD-10 codes around 2015. |
Positive predictive value and sensitivity were unable to be assessed due to the non-existence of a gold standard for pain measurement. HP2030 = Healthy People 2030; NHIS = National Health Interview Survey; MEPS = Medical Expenditure Panel Survey; NHANES = National Health and Nutrition Examination Survey; NAMCS = National Ambulatory Medical Care Survey; NCHS = National Center for Health Statistics; NEHRS = National Electronic Health Records Survey; NHCS = National Hospital Care Survey; EHRs = electronic health records.