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Findings and Conclusions

From its review the committee reached consensus on eight main conclusions with relevance to SSA’s evaluation of an individual’s severity of disability and appropriateness for benefits. For each conclusion, the committee presents its rationale and summarizes the information and findings that it reviewed and that are discussed in the report.

OVERALL CONCLUSIONS

1. Tremendous progress has occurred in the development of new—and the improvement of existing—diagnostic and evaluative tests used in clinical practice over the last 30 years.

The committee reviewed evidence on many selected diagnostic and evaluative tests that demonstrate increased accuracy over previously generally available tests or that fulfill functions for which tests were previously unavailable. In many cases these important advances are helping improve the ability to diagnose conditions in the pre-symptomatic phase of disease (such as genetic testing for neurodegenerative conditions) or at the early stages, when the disease may be less severe. Earlier diagnosis allows earlier treatment initiation, which may help reduce the risks and disabling consequences of severe disease.

2. Despite displaying new or improved diagnostic capabilities, new diagnostic tests are limited in their ability to provide information regarding the presence or severity of disability.

Many of the new and improved diagnostic techniques reviewed provide information that was previously unavailable about the presence and nature of a disorder or disease and its stage of development. Diagnostic tests may demonstrate that an individual has a condition that is serious enough to cause severe, long-lasting, or permanent impairments and thus support a determination of disability. Advances in medical diagnostics could also increase the opportunities for disabled individuals to be diagnosed with another condition in the pre-symptomatic or early symptomatic phase that eventually may also be disabling. However, diagnostic accuracy is not always sufficient, and even medical tests that make possible the precise measurement of disease characteristics may not provide accurate or useful informative about the degree of an individual’s functional limitations. In the context of continuing disability review, new or improved diagnostic tests will often yield little or no information on the functional consequences of previously identified health conditions.

3. Evaluative tests can measure functioning and disability. There is insufficient evidence to conclude that any new or improved evaluative test could demonstrate that an individual is more or less disabled than had been previously found in the disability determination process.

There are a wide variety of evaluative tests available that measure functioning and disability, addressing the interplay among body functions and structures at the organ level, activities at the person level, and participation at the societal level. Many of these tests have excellent validity and reliability and can help identify functional limitations that lead to disability. However, the committee’s review did not reveal sufficient evidence from high-quality comparative evaluations between various evaluative tests to demonstrate that any particular evaluative test is more precise or accurate than other tests to the point that an individual evaluated using that test should be deemed more or less disabled than the person was when previously evaluated. Furthermore, focusing solely on the accuracy or precision of any one evaluative test to understand whether an individual may be more or less disabled oversimplifies the dynamic nature of, and contextual influences on, disability. A change in a person’s level of functioning may be due to the nature of his or her health conditions, to medical treatments, or to the influences of the physical and social environments on health.

4. Measuring functional limitations accurately requires gathering multiple sources of information as no single source can reliably and definitively determine a person’s ability to engage in substantial gainful activity.

Results from functional testing are important in disability determinations because there is not always a strong correlation between diagnosis

and an individual’s functional limitations. Furthermore, rarely is a single evaluative test adequate to determine whether a person can or cannot perform substantial gainful activity. It is essential to interpret the results of evaluative tests in the context of an individual’s history, findings on physical examination, and other relevant testing (e.g., functional testing in a real work or school environment) in assessing disability. A test of a person’s capacity (e.g., 6-minute walk test) cannot provide a comprehensive understanding of the consequences of an individual’s functional limitations in real-world settings. Contextual factors (physical and social environment) and personal factors (such as motivation) that influence a person’s performance in everyday settings are critical in the assessment and interpretation of disability. In the pediatric population, tests used to assess impairments are often similar to those used in adults but are normed based on age, development, and size. Understanding the developmental trajectory in children is crucial to interpreting findings from measures of physical functioning in children. Overall, the committee found that SSA’s current process for examining residual functional capacity would likely benefit from improvements in the systematic collection of information from multiple sources, increased objectivity in the process, and more comprehensive examination of all aspects of whole person function.

5. There are barriers to the widespread use of diagnostic and evaluative medical technologies.

Even for generally available diagnostic and evaluative tests, barriers to access and availability often exist, depending on the social, economic, and other characteristics of patient, provider, insurance coverage, and health care systems. Studies show that people unable to access timely, appropriate care are less likely to be diagnosed with early-stage disease, are more likely to have co-morbid conditions, and are more likely to experience poorer health outcomes overall, including disabling consequences. If an individual does not have access to important diagnostic and evaluative tests, it limits the clinician’s ability to determine the nature and severity of the person’s condition with increased specificity. Many modern diagnostic techniques today use highly specialized equipment and require specific expertise in the use and interpretation, and neither the equipment nor the expertise is uniformly available across health care settings. There is greater access to these resources at major medical centers, academic centers, and in specialty medical practices. The variable distribution and availability of diagnostic and evaluative resources can be a barrier to the integration of these resources into routine clinical practice in some areas of the country.

6. Functional assessments using patient-reported measures are valid and reliable indicators which deserve greater attention by SSA.

The use of patient-reported measures in functional assessments can provide an enhanced understanding of the effects of disease on health, functioning, and quality of life, and thus these are important tools in monitoring disease progression across a wide spectrum of diseases. There are hundreds of validated patient-reported measures relating to nearly all body regions and conditions that are used clinically to assess a range of functional outcomes, such as return to work, physical function, cognitive function, emotional function, support network, and social supports. Functional Assessments for Adults with Disabilities (NASEM, 2019) is an important source of information and insight about functional assessments in disability and provides a detailed compendium of functional assessment instruments, including patient-reported measures.

7. There are important gaps in the literature and in knowledge for each of the body systems regarding how diagnostic and evaluative tests perform differently across subpopulations and in comparison with other tests.

The committee found important gaps in the existing research literature regarding how various diagnostic and evaluative tests may perform differently across racial/ethnic groups, by age of the participants, or by other sociodemographic characteristics. Furthermore, the committee notes that some diagnostic or evaluative tests may not be culturally or linguistically sensitive and results may not be reliably compared between subpopulations. Research focused on determining the validity of generally available diagnostic and evaluative tests across the full range of developmental, demographic, cultural, linguistic, and socioeconomic groups would enhance SSA’s ability to make disability determinations.

8. Advances in health care are constantly occurring, which makes staying abreast of new and improved diagnostic and evaluative tests important for assessment and care.

Frequent updates to SSA program guidance performed in a timely manner would help ensure that the disability evaluation process consistently reflects the best current practice in clinical diagnosis and in the evaluation of disability.

REFERENCES