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PART V
CONCLUSIONS AND
RECOMMENDATIONS
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13
Conclusions and
Recommendations
rT\he Social Security Administration (SSA) and the
~ Congress have acknowledged difficulties in eval-
uating claimants for disability benefits whose complaints and dysfunc-
tion are not fully accounted for by clinical evidence of disease or injury.
Persons with chronic pain, especially musculoskeletal back pain, are
thought to constitute the largest category of such claimants.
The Institute of Medicine (IOM) was asked by the SSA to follow up
on the work of the Department of Health and Human Services (HHS)
Commission on the Evaluation of Pain to further elucidate the factors
that influence the course of development from acute to chronic pain, to
explicate the concept of illness behavior as applied to chronic pain, to
review the state of the art of assessing and measuring pain, to consider
making recommendations about how the SSA disability programs
might better evaluate claimants with chronic pain and provide incen-
tives for rehabilitation, and to make suggestions about research that
holds promise for improving our understanding of chronic pain and the
disability process.
The SSA disability program is the largest in the world. Thousands of
people at the local, state, and federal levels are involved in the
eligibility determination process and program administration. As
discussed in Chapter 4, differences in the perspectives and goals within
various program elements and among the many levels of review and
adjudication create a variety of tensions and conflicts. For example,
differences in the perspectives of physicians and administrators and of
SSA-employed physicians and consulting physicians are likely to have
263
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264 CONCLUSIONS ED RECOMMENDATIONS
a differential impact on judgments about eligibility for benefits.
Furthermore, despite detailed rules and regulations for determining
eligibility for benefits, subjectivity is inherent in the process. This is
most striking at the administrative law judge level of appeal (the only
time a claimant is seen face to face), where approximately half the
decisions of the administrative paper reviews are overturned.
The entire program operates within the constraints of laws and
congressional and public pressures that reflect economic conditions
and societal views about the extent and nature of governmental
responsibility to care for those who are unable to work (see Chapter 21.
Like other cash transfer programs, there is a constant tension between
forces trying to expand the program and forces trying to keep it tightly
constrained. This derives in part from conflicting views about whether
the provision of benefits is inherently a disincentive to work.
In conducting this study the lOM committee assumed that it was
inappropriate to consider recommending changes in the legal defini-
tion of disability under which the SSA operates, which implies a total
and permanent inability to work in any gainful occupation. Not only
would such considerations go far beyond the study's mandate, but the
definition is too central to the basic philosophy of the SSA disability
program to expect Congress to seriously entertain revisions. Nonethe-
less, within the constraints of the existing definition of disability, the
committee did explore numerous procedural issues.
In reviewing data from the SSA, hearing testimony from SSA
officials and experts in pain assessment, analyzing the published
literature, and in its own discussions, the study committee was struck
by the complexity of the disability system and by the extraordinary
complexity and multifaceted nature of chronic pain. Several crucial
gaps in knowledge about chronic pain and its relation to disability bear
importantly on the study mandate. These include, for example:
· inconsistencies in definitions and measurement that make it
difficult to generate reliable estimates about the numbers of people in
the population with chronic pain and associated dysfunction; these are
the people at risk for becoming unable to work and applying for SSA
disability benefits;
· lack of data about the numbers and characteristics of SSA cIaim-
ants and beneficiaries in the disability program whose primary com-
plaint is pain and how they fare over time;
· lack of reliable methods for predicting which patients with acute
and subacute pain will develop chronic disabling pain; although many
factors are known to correlate with chronic disabling pain, predictive
models have not been developed;
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CONCLUSIONS ED RECOMMENDATIONS 265
· untested assumptions about the ability of early treatment and
rehabilitation to interrupt the course of chronic pain; although there is
general agreement that the longer a person has had a chronic condi-
tion, the more difficult it is to achieve rehabilitation, there are few data
that attest to the effectiveness of early intervention; and
· imperfect correspondence between severity of pain and dysfunc-
tion; people can have severe pain with minimal functional limitations
or minimal pain with severe limitations.
In light of these and other considerations that will be discussed, the
committee cannot responsibly make recommendations for major
changes in the way the SSA disability programs operate. In the
absence of more specific and refined data, the implications of such
changes cannot be accurately estimated in terms of their monetary
costs, administrative burden, or their effects on the fair and equitable
functioning of the programs. However, the committee does recom-
mend one important change that holds promise for improving the
way the SSA handles chronic pain complaints (see Recommenda-
tion 31. Furthermore, in order to clarify a number of aspects of the
problem and provide the basis for making well-informed decisions
about other significant changes that might be entertained in the
future, the committee recommends several demonstration projects and
research studies. The committee also makes recommendations about
clinical practice and the education of health professionals to improve
the prevention, diagnosis, treatment, and rehabilitation of chronic
pain.
On the basis of its deliberations and an analysis of the available
literature, the TOM study committee makes six major recommenda-
tions.
1. The SSA should develop a better system for routine data collec-
tion and information retrieval for the disability programs in order to
know more about the numbers, characteristics, and outcomes of
claimants and beneficiaries generally and to know more about pain
claimants and other troublesome categories of claimants specifically.
2. Neither "chronic pain syndrome" nor "illness behavior" should be
added to the listings of impairments.
3. Significant pain, even in the absence of clinical findings to
account for it, should trigger a functional assessment of the capacity
for work.
4. The SSA should support the design and execution of two major
demonstration/evaluation projects: one to develop and compare several
methods for assessing pain claimants early in the evaluation process,
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266 CONCLUSIONS ED RECOMMENDATIONS
and one to assess the efficacy of early multidisciplinary rehabilitation
interventions with chronic pain patients.
6. The Secretary should take the lead in ensuring that a broad
research initiative on pain and disability is undertaken within HHS.
This should include at least one major longitudinal epidemiological
study to identify the determinants of chronic disabling pain; clinical
studies on the efficacy of commonly used treatment modalities and the
optimal timing of interventions to prevent chronic disabling pain;
methodological studies to develop and validate measures of clinical
phenomena, psychosocial variables, and pertinent outcomes relevant
to chronic pain and disability; and health services research to elucidate
the contributions of important sociocultural variables to illness pro-
gression and illness behavior and to study the interactions of the
health care delivery system and disability programs with patient/
claimant behavior.
6. The training of health care professionals should entail a compre-
hensive and multidisciplinary approach to patients with pain that
includes attention to important psychological, social, and cultural
contributions to the development of chronicity and associated illness
behavior. Such an orientation is likely to improve the diagnosis,
treatment, and rehabilitation of chronic pain patients and to prevent
or mitigate long-term negative outcomes.
A discussion of each of these recommendations and the conclusions
on which they are based follows.
Recommendation ~
DATA COLLECTION AT THE SSA
In the course of its activities, the committee found that specific
figures and reliable estimates about the numbers and characteristics of
pain claimants in the SSA disability programs and about what
happened to claimants and beneficiaries over time were not available.
Thus, the committee finds that routine data collection activities for the
entire disability system should be improved. Recognizing that the
creation of a data collection system for such a large program is a major
undertaking, the committee suggests that collaboration with other
government agencies, especially the National Center for Health Sta-
tistics and the Bureau of the Census, on routine and special data
collection activities, might be especially useful and efficient. Better
data collection and retrieval capabilities would provide valuable infor-
mation to the program administrators and would also facilitate re-
search by the agency or others.
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CONCLUSIONS ED RECOMMENDATIONS 267
An improved data collection system would permit the SSA to define
more concretely its problem with chronic pain claims. The committee
recommends that the SSA commission a study to address the following
questions.
· What proportion of claims are based primarily on pain?
· What proportion of pain claimants are found eligible under the
existing rules and at what level of review or adjudication?
· What share of the appeals at each level are pain cases and what
are the results?
· How much time elapses between the onset of chronic disabling
pain and application for the disability benefits?
· Is the SSA a last resort or a first resort for chronic pain patients?
To what extent do Social Security Disability Insurance pain claimants
also seek and receive benefits from Workers' Compensation or other
public and private disability programs?
e What happens to people with claims based primarily on pain who
are denied eligibility? How many ever return to work or enter the
disability system at a later time?
Expert consultation should be sought for the design of both the
information system and the study to ensure their scientific validity
and maximum utility to the SSA.
Recommendation 2
NO NEW LISTINGS FOR PAIN OR ILLNESS BEHAVIOR
"Chronic pain" alone should not be added to the SSA regulatory
listing of impairments that allow a presumption of disability, nor
should "chronic pain syndrome" be added to the listings. Likewise,
"illness behavior" should be neither a diagnosis nor a listing.
Although acknowledging the value of the terms chronic pain syn-
drome and illness behavior in certain contexts, the committee has
reservations about their use. First, the lack of consistent definitions of
each term is likely to cause confusion and misunderstanding. Second,
each term risks reifying conditions that are highly variable, thereby
implying a homogeneity in patients and conditions that does not exist.
As discussed in Parts lIT and IV of this report, chronic pain does not
present a coherent, clearly defined constellation of symptoms and signs
that can appropriately be called a clinical syndrome or a medical
diagnosis. There has been no demonstration of a common etiology, a
predictable natural history, or specific treatment for the various pain
conditions that would suggest a basis for positing a single chronic pain
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268 CONCLUSIONS ED RECOMMENDATIONS
syndrome. Therefore, the committee recommends using terms that are
more specific to the particular complaints, problems, and deficits being
discussed.
Similarly, the committee's judgment is that illness behavior is
neither a disease nor a diagnosis. As described in Chapter 8, the term
refers to a concept intended to describe the behavior of individuals
responding to illness or to the belief that they are ill. All individuals
exhibit such behaviors in varying ways. The concept and the perspec-
tives associated with it facilitate appropriate inquiry and provide a
framework for understanding behavior but are not intended to de-
scribe clinical status. The key variables underlying the concept are the
particular types and intensity of the behavioral manifestations of
illness.
The recommendation that there be no listing for chronic pain
syndrome and illness behavior certainly does not mean that chronic
pain, and chronically painful conditions, should be ignored in the
a~ninistrative process. On the contrary, as discussed throughout this
volume, the committee believes that pain should be attended to in a
more thorough and systematic fashion in clinical practice and in the
determination of eligibility for disability benefits.
-
Recommendation 3
SIGNIFICANT PAIN SHOULD TRIGGER AN ASSESSMENT
The committee recommends that significant pain as a primary
complaint should trigger a functional assessment, even in the absence
of objective clinical findings that could reasonably produce the pain. In
the current sequential evaluation process (see Chapter 3), once it has
been established that the claimant is not working, the second step is to
determine whether the claimant has a "severe impairment" (e.g., one
that interferes with the performance of basic work activities). When
symptoms such as pain are alleged, there must be objective physical
findings to substantiate the presence of an "impairment" (the SSA
uses the term impairment to refer to both a disease and to an inability
to do something that results from a disease) that could reasonably
produce the symptoms. If such findings do not exist and it has been
determined that there is no mental impairment (as defined in the
SSA's Listing of Impairments) to account for the pain, the claim is
denied on medical grounds alone without considering vocational
factors. If the impairment is determined to be severe, the third step is
to determine whether the impairment "meets or equals the listings."
The listings include diagnoses and associated signs, symptoms, and
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CONCLUSIONS ID RECOMMENDATIONS 269
findings, usually at a specified level of severity, all of which must
be present in order to meet the listing. Many listings, such as arth-
ritis, include pain as one criterion that must be present along with
several others. If a claimant meets or equals the listings, benefits are
granted; if a claimant does not satisfy the listings, the evaluation
proceeds to an assessment of the cIaimant's residual functional capac-
ity to perform past relevant work. It is at this fourth stage that
vocational factors are considered. An assessment is made of exertional
and nonexertional limitations in order to determine whether the
claimant has the capacity to perform work-related physical and mental
functions despite the limitations caused by a medically determinable
impainnent. The residual functional capacity assessment is based on a
paper review of medical findings that must therefore be detailed
enough to permit a medical judgment about the cIaimant's functional
capacities.
In this sequential evaluation, a pain claimant without clinical
findings to account for the symptom would be denied benefits at the
second level. The committee's recommendation is for a primary com-
plaint of pain to allow assessment of the claimant's functional capac-
ities for work in other words, essentially to proceed to the fourth
level. The SSA's recently revised mental illness listings provide a
precedent for this approach. They are based on integrated functional
criteria, not simply a diagnosis, by which claimants are evaluated
primarily on their ability to function in activities of daily life, includ-
ing work.
Disability benefits have not been awarded on the basis of self-reported
pain uncorroborated by objective findings, nor does the committee believe
they should be. However, the kinds of acceptable evaluation and corrob-
oration should not be limited to medical evidence of an underlying disease
process. With or without such findings, consideration should also be given
to serious functional limitations and serious problems on measures of
integrated behavior. This means not only assessing physical abilities
such as sitting, standing, lifting, and walking, but also examining how
the limitations imposed by pain affect aspects of the individual's daily life:
sleeping, eating, self care, interpersonal relationships, the ability to
concentrate, and work activities. In the comm~ttee's view, an increased
emphasis on functional assessment of claimants early in the evaluation
process holds promise for preventing some errors of commission and
omission in eligibility determinations and for averting at least some of
the later appeals for higher review and adjudication. Moreover, while
recognizing that government agencies and programs con never be
shielded finally from politics, it is important to protect individual disability
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270 CONCLUSIONS ID RECOMMENDATIONS
determinations from political pressures by making judgments as scien-
tifically and clinically sound as possible given the inherent difficulties
and subjectivity involved.
Recommendation 4
DEMONSTRATION PROJECTS
The committee recommends two distinct but interdependent types
of studies. One type is research to further scientific understanding
of chronic pain and disability and to develop improved methods for
conducting such studies (see Recommendation 5~. The other type is
demonstration projects with immediate policy relevance whose purpose
is to assess the feasibility and consequences of changes in SSA proce-
dures.
Demonstration: The Feasibility and Consequences
of Early Assessment
Because of the general lack of information about pain claimants and
how best to assess them, the committee recommends that a well-
designed and well-evaluated demonstration project be undertaken by
the SSA: (1) to evaluate the effects of assessing pain complaints at the
initial state level of review, (2) to compare several methods of evalu-
ating pain and associated dysfunction, and (3) to determine and
compare the impact of each type of assessment on the following kinds
of procedural and outcome variables:
~ allowance and denial rates for pain claimants in general and to
determine whether certain types of pain claimants are more likely
than others to be found eligible with each method;
· appeal rates for each method among pain claimants who are found
ineligible for benefits at the initial determination;
· reversal rates for cases appealed to the administrative law judge
level;
· average length of time to final decision for each method;
· overall costs to the program for each method; and
· claimants' and evaluators' views of the fairness of the process, and
evaluators' views of the ease with which the assessment can be done.
The recommendation for a demonstration project to evaluate various
methods for assessing pain early in the eligibility determination
process is based on a number of observations and conclusions. First,
the TOM committee concurs with the HIS Pain Commission that pain
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CONCLUSIONS ACED RECOMMENDATIONS 271
is subjective and that there is no completely reliable or valid way to
measure it. Furthermore, because pain and functional impairment are
imperfectly correlated, even if there were an instrument to measure
pain, it would not necessarily provide an accurate assessment of
functional impairment—which should be the key to eligibility for
disability benefits.
As discussed in Chapter 7, by measuring nervous system activity
one can measure activity that reliably produces pain; but pain itself
cannot be measured in an equivalently objective way. Because the
perception of pain is subjective, it will always be an inference from
neural activity or observations of behavior. Because pain cannot be
measured directly, various indirect methods have been developed to
assess the effect of pain as perceived by the patient or by observers. No
one method is complete by itself. Each method has some positive and
negative features in terms of practical considerations (e.g., how Tong
each takes to administer, ease of interpretation, and costs) and in
terms of reliability.
Second, although a number of sophisticated means of assessing
chronic pain claimants have been developed, as discussed in Chapter
11, it has not been demonstrated that these methods provide more
accurate measures of pain or of the relation between pain and func-
tional impairment than some simpler methods, such as systematic
observation of the claimant directly or using videotape recordings.
Third, the committee believes that assessment for clinical purposes
and assessment for the purpose of certification/eligibility are and
should be distinct processes. Clinical assessment is performed to
diagnose and treat pain. Assessment for SSA disability screening or
other certification purposes, however, is done to determine whether the
claimant qualifies for benefits. While risky evaluation procedures may
be acceptable in the context of treatment that includes discussion with
the patient and fully informed consent, from an ethical perspective it
would be inappropriate to require claimants to undergo such proce-
dures to determine their eligibility for benefits. Furthermore, using
the same personnel for treatment and for eligibility determination
risks compromising the doctor-patient relationship and producing
conflicting obligations for the physician. From a programmatic per-
spective, practical considerations, including costs, may further con-
strain the nature and extent of assessment.
Finally, the committee cautions that an unnecessarily sophisticated
assessment process for disability determinations is likely to delay
decisions and increase costs. In the interest of developing a decision-
making process that is optimally efficient in terms of time and money,
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274 CONCLUSIONS ID RECOMMENDATIONS
must be able to demonstrate a potential to work and benefit from a
rehabilitation program. These two requirements work at cross-pur-
poses.
Third, as noted by the Pain Commission, although the Social Security
disability programs include features intended to provide incentives for
rehabilitation (e.g., a trial work period with continuation of disability and
medical benefits), such opportunities are seldom used. This appears to be
due largely to two factors: fear of losing benefits and lack of knowledge
about the existence and details of such provisions. The committee
strongly endorses the Pain Commission's recommendation that a con-
certecI educational/informational campaign should be undertaken to
acquaint beneficiaries, physicians, lawyers, and employers with the
existing SSA provisions for rehabilitation and return to work.
Finally, although the details go well beyond the scope of this
inquiry, the committee notes that the lack of coordination between
agencies providing disability benefits and those providing rehabilita-
tion services in terms of their eligibility requirements, administration,
and funding does not encourage rehabilitation. Furthennore, the
committee notes that several basic features of the SSA disability
program, including the definition of disability and the 5-month wait-
ing period, may preclude rehabilitation as a realistic goal on a large
scale because most of those who qualify for disability may simply be
too impaired to return to work.
The HHS Pain Commission's Proposal
A key recommendation of the Pain Commission was that the SSA
undertake a demonstration project "to determine what proportion of
individuals determined to meet the [commission's] selection criteria
for impairment due primarily to pain can be reactivated and vocation-
ally rehabilitated through intensive treatment in appropriate treat-
ment centers anchor vocational rehabilitation centers and the treat-
ment modalities which achieve maximum success with these
individuals." The cost-effectiveness of rehabilitating this population
and of"incorporating a reactivation/vocational rehabilitation program
as an integral part of case evaluation in disability claims where
impairment is due primarily to pain" are to be evaluated. The
commission's proposal is to test the efficacy of rehabilitation quite late
in the chronic pain/disability process. The IOM committee endorses
this recommendation, but also suggests that a related demonstration
project should be designed to assess the effects of intervention earlier
in the course of chronic pain.
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CONCLUSIONS ED RECOMMENDATIONS 275
Demonstration Project for Early Rehabilitation
By the time claimants apply for SSA disability benefits, chronicity is
well established and functional impairments are severe. Early identi-
fication and rehabilitation hold promise for preventing Tong-term
disability, which would ultimately reduce the number of claimants and
beneficiaries. Thus, in the committee's view, it is appropriate for the
SSA to sponsor this demonstration.
The possible value of early and active rehabilitation for pain
patients should be thoroughly explored. The committee recommends a
demonstration/evaluation project to identify pain patients before they
apply for disability benefits and to over them a package of multidis-
ciplinary rehabilitation, time-limited cash benefits, and medical ben-
efits.
Several critical questions must be addressed in planning such an
effort. For example:
· When is the optimum time to identify those at risk?
· How can they be identified? VVhat screening tools should be used?
A relatively simple screening method should be developed to attempt
to identify those at highest risk for Tong-term disability. The informed
judgment of the committee is that a mobility scale may prove to be a
reliable indicator of those at high risk for maintaining a chronic pain
problem in the long term; such scales assess the functioning of an
individual in his or her usual activities, such as working, household
responsibilities, leisure activities, and use of transportation. This and
other methods should be tested and compared.
· Who should identify the study population?
· What kinds of people are being sought? Are there particular
categories of people, such as those with back pain of uncertain origin or
those with pain and depression, for example, who are at high risk for
the development and maintenance of chronic pain problems?
· What should constitute appropriate rehabilitation services and
what standards should be set to allow for comparative studies?
· Who should provide rehabilitation services? Presumably a sample
of multidisciplinary pain clinics would be selected, but the population
of such specialized centers is difficult to define because of the variation
among such centers in their approaches to pain rehabilitation.
The committee recognizes that these are difficult issues to resolve,
but not prohibitively so. A well-designed, well-evaluated demonstra-
tion to develop and test methods for reliably identifying patients likely
to develop chronic disabling pain and for testing the efficacy of
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276 CONCLUSIONS kD RECOMMENDATIONS
particular rehabilitation techniques will yield invaluable information
for the disability program that may suggest ways to better integrate
the rehabilitation aspect of the program with the disability benefits
part. For clinicians also, this demonstration is of paramount impor-
tance to the prevention, treatment, and rehabilitation of chronic pain.
Evaluation of the Demonstrations
Rigorous evaluation must accompany the demonstrations if they are
to provide reliable information on which to base policy decisions.
Accordingly, we make the following four recommendations.
1. Plans and/or requests for proposals to execute demonstration
projects should be separate from requests for proposals to evaluate
those projects.
2. "Evaluators" should be investigators neither accountable nor
beholden to the "demonstrators" in order to assure objectivity of the
evaluation. Evaluation of demonstration projects should not be con-
ducted by the SSA staff.
3. Requests for evaluation of proposals should require details about
research design, specification and measurement of key variables, as
well as criteria for success of the demonstration and of the evaluation
component.
4. The evaluation should be designed and baseline data gathered
before the demonstrations begin.
The committee recognizes that such evaluation is costly and could be
even more expensive than the demonstration. Justification of the costs
of evaluation and the time needed to do it should be linked to the
resource and cost implications of widespread implementation of a
successful model, or the accrued savings when an ineffective but
politically appealing demonstration is shown to be worthless.
A Note About Research with Human Subjects
The committee is aware that the Social Security Act gives the
Secretary authority to suspend the normal rules for purposes of
demonstration projects without institutional review board review and
all that that entails. Although the federal requirements for research
with human subjects are not strictly applicable to testing modifications
of entitlement programs, the committee voiced concern that in imple-
menting the demonstration projects the Secretary should be sensitive
to the needs of the claimants regarding appropriate notice, ir~forma-
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CONCLUSIONS AND RECOMMENDATIONS 277
tion, and consent. Specifically, claimants should be informed that they
are involved in a demonstration project and that the old rules and
regulations do not apply; they should be informed about the new
procedures and regulations. The right to appeal must be maintained.
Participants should be informed of this right and how to exercise it.
In addition, the committee shares the concern of the Pain Commis-
sion about the interpretation and application of results from demon-
stration and research projects. Caution should be exercised in applying
summary statistics and general research findings to the decisions
made about individual claimants. The Social Security Act requires
personalized adjudication of disability claims. Therefore, research
results documenting aggregate behavior should not be the basis for
denying benefits to an individual. Results of research and demonstra-
tion projects can be useful in designing an equitable system, but they
must not substitute for the personal assessment and adjudication to
which claimants are legally entitled.
Recommendation 5
RESEARCH AGENDA
Throughout its work, the committee found critical information
lacking about every aspect of the chronic painJ6isability problem.
Epidemiological, clinical, health services, and methodological studies
are needed. Recognizing that such a broad research initiative goes far
beyond the immediate concerns of the SSA, the committee recom-
mends that the Secretary coordinate this effort within HHS in consul-
tation with SSA officials and other federal agencies that have pro-
grams and conduct research relevant to these issues.
Epidemiological Initiatives
Epidemiological initiatives should be directed primarily to a pro-
spective study of at least two cohorts. Such a study will help elucidate
the determinants of chronicity, disability, and other poor outcomes.
As discussed at length in Chapter 6, virtually all of our information
about chronic pain comes from cross-sectional studies. Although rec-
ognizing that prospective studies are expensive and difficult to execute,
the committee feels strongly that such a study is the only way to get
the critical information needed to understand who is at risk for
developing chronic pain, and hence, who is a potential claimant for
disability benefits. Until the size of the universe of potential pain
claimants has been estimated and their characteristics described,
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278 CONCLUSIONS ED RECOMMENDATIONS
entertaining proposals for major changes in the disability programs
would be unwise. Furthermore, such a study would point the way to
the development of successful prevention strategies, including the
critical issue of the optimal timing of interventions and directing
efforts at those most likely to require and benefit from them.
Clinical Research
Clinically, the compelling need is to demonstrate the effectiveness of
commonly used therapeutic and rehabilitative interventions used
singly and in various combinations. The most powerful method for
investigation is the randomized controlled trial. There have been very
few such studies to assess the benefits and harms of the many
medications, physical therapy techniques, and surgical interventions
that are frequently used for back pain. Little is known about the
characteristics of those for whom particular interventions are likely to
be more or less successful or about the optimal timing of specific
treatment methods. Important factors such as concurrent diagnoses
and compensation status have rarely been described in detail or
controlled for in clinical trials. In the rehabilitation studies there are
significant biases in the selection criteria for admission to programs.
What happens to people who are not admitted and the effects of such a
selection on outcomes have not been analyzed clearly.
As discussed in Chapter 12, none of the studies that purport to
address the question of whether receipt of benefits affects rehabil~ta-
tion potential has systematically examined the particular elements
within the categories of "compensation" versus "no compensation" that
may account for the findings in either direction. Although it is
certainly possible that receiving benefits could be a deterrent to
rehabilitation, as discussed in Chapters 4 and 12, many other equally
plausible explanations have little to do with compensation itself.
Related to the need for clinical trials of commonly used interventions
is the need to apply promising findings from laboratory research to the
treatment of pain patients. A National Academy of Sciences Research
Briefing Panel on Pain and Pain Management (1985) found that
clinical research had lagged behind laboratory research and that there
was an unfortunate delay in disseminating laboratory findings to
clinical settings. The pane} urged the establishment of multidiscipli-
nary research centers to promote the development and the application
of new knowledge in pain and pain control. This committee concurs
and recommends that the results of basic biological, neurological, and
behavioral pain research be better tested in clinical settings and used
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CONCLUSIONS ID RECOMMENDATIONS 279
in the planning and evaluation of research on clinical management
and therapeutic procedures.
Furthermore, a number of basic clinical questions about pain have
yet to be adequately studied. For example, not much is known about
the relation between chronic pain and the actual diagnosis given to
patients, about the cause and effect relation between chronic pain and
disorders such as depression and alcoholism, and about the natural
histories of the various chronically painful conditions. Prospective
studies particularly cohort analytic studies of at least several
years duration are needed on the clinical disorders and psychosocial
factors related to chronic pain. These could be done as part of the
longitudinal cohort study discussed previously or as separate clinical
studies. Well-designed cross-sectional studies with appropriate control
groups would also be useful.
Health Services Research
Very little is known about patterns of utilization of traditional and
nontraditional health care among chronic pain patients other than the
fact that care from multiple sources is often sought (see Chapters 6 and
81. Studies of the sequence of help-seeking and the effects of different
kinds of care on subsequent health status for patients with various
pain conditions and personal characteristics would provide valuable
information about patients' decision making and about the appropriate
timing of interventions. Such studies would also elucidate the process
of illness behavior and hold promise for identifying critical elements or
stages in the process for successful intervention.
It is generally asserted that features of the health care and disability
systems, and the nature of the interactions with health care profes-
sionals and disability examiners, affect the behavior of pain pa-
tients/ciaimants. This assertion has not been systematically studied.
Such research holds promise for discovering important clues for
altering behavior, optimizing the organization and content of health
services, and identifying elements of the eligibility determination
process that may encourage illness behavior.
Improved Methodology and Multidisciplinary Research
As discussed throughout this volume, definitions of key terms, outcome
measures, follow-up periods, assessment methods, intervention strate-
gies, and selection criteria vary widely. Most existing studies rely on
small, poorly described heterogeneous samples and rarely use control
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280 CONCLUSIONS ID RECOMMENDATIONS
groups. Progress in this field depends on developing and refining uniform
definitions and approaches to measuring numerous independent once
dependent variables, including patient classification, psychosocial vari-
ables, the delineation of interventions, and outcomes. Methodological
research of this type is extremely sophisticated and requires input from
experts in a number of disciplines in order to be effective.
Ideally, all of the studies in this research agenda would be designed
and executed by multidisciplinary teams of clinicians and epidemiol-
ogists in collaboration with psychologists, sociologists, economists,
policy analysts, and statisticians as appropriate to the issue being
addressed. The design of the sampling frames will be particularly
important in several of these studies. Recognizing that the recom-
mended research is likely to go well beyond what the agency is able to
do in-house, the committee recommends that the SSA consult with
appropriate experts in research design, measurement, and statistics in
planning these various studies, and that the actual studies be con-
ducted by a multidisciplinary group of outside experts.
The research agenda recommended by this committee will facilitate
judicious inquiry into important clinical and policy-relevant questions.
Much of the agenda pertains to issues of prevention. Epidemiological
studies to identify people at risk for chronic pain before negative
outcomes are apparent, methodological research to develop and test
ways of identifying people early in the pain trajectory who are likely to
go on to chronicity, controlled trials of particular treatment techniques
alone and in combination, and studies of the optimal times to intervene
all hold promise for preventing chronic disabling pain. It is not possible
to estimate the cost of this research without designing the individual
studies. However, the committee notes that the cost of these studies is
likely to be slight compared with the potential savings in medical care
expenditures and disability benefits for chronic pain.
Recommendation 6
EDUCATION TO IMPROVE THE CLINICAL CARE AND
TREATMENT OF CHRONIC PAIN PATIENTS
Among the committee's members were clinicians and researchers
knowledgeable about and experienced in the care of medical and surgical
patients with pain and the course of their illnesses. There was much
discussion of the appropriate and inappropriate treatment of those with
chronic pain, especially musculoskeletal back pain. In addition, the
committee reviewed the available epidemiological and clinical data about
pain and the development of chronic pain in order to determine the range
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CONCLUSIONS ED RECOMMENDATIONS 281
of techniques used in practice and their effectiveness in eliminating,
reducing, and preventing chronic pain and associated dysfunction and
disability. These activities have led to a number of conclusions about the
nature of chronic pain and appropriate clinical management, and to
recommendations about the postgraduate medical training of primary
care practitioners and specialists.
Everyone supers severe pain from time to time; for most of us, each
episode ends with the resolution ofthe symptom or the disorder producing
it. A small but significant proportion of individuals treated may get less
than optimal relief, have recurrences, and develop chronic pain. What
differentiates people who develop chronic pain, who can function with it,
or who become disabled is not well understood. At the time of the first
episode of pain it is difficult to predict the course of the condition for a
given patient, the likelihood of recovery, the response to specific thera-
pies, or the potential for rehabilitation and return to a more active role.
What is known is that physical, psychological, socioeconomic, cul-
tural, and situational factors all interact to influence the development,
course, and outcome of persisting pain. As discussed in Chapter 10, in
order to understand and electively manage patients with chronic
conditions, a mode] is needed that includes attention to multiple variables
including psychological, sociocultural, and behavioral factors.
Pain patients, regardless of the duration of illness, should have a
comprehensive assessment. A thorough history and physical examina-
tion is needed to detect the presence of physical, neurological, or
musculoskeletal abnormalities and to determine what diagnosis, if
any, can be confirmed. Comprehensive clinical assessment requires a
variety of measures and data. Sources of information include subjec-
tive report data, information from others close to the patient, behav-
ioral data, organic findings, and direct observation by physicians and
other professionals experienced in functional assessment. An evalua-
tion of contributing psychosocial and behavioral factors should be
conducted by collecting information on the patient's family, work,
school, and community in which the pain is experienced and by which
it is influenced. Using a variety of methods from many disciplines, it is
possible to build a more accurate picture of the effects of pain on a
patient than by relying on a single method.
Such evaluations require expertise in a number of disciplines and in
skills such as functional and psychosocial assessment and neurological
and muscuToskeletal examinations. Currently, few individual clini-
cians are competent to conduct such multidisciplinary evaluations of
pain patients or to recommend and coordinate appropriate therapy.
The patient is typically referred to a series of experts, each of whom
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282 CONCLUSIONS ~p RECOMMENDATIONS
does part of the assessment and/or part of the treatment. Alterna-
tively, the committee recommends that individual clinicians receive
training in those aspects of the various specialty disciplines that deal
with significant numbers of pain patients (e.g., orthopedics, neurology,
psychiatry, anesthesiology, and physical medicine and rehabilitation).
Such individual clinicians would then be qualified to conduct multi-
faceted evaluations, institute appropriate therapeutic measures, and
coordinate treatments that are beyond their own expertise.
Practitioners must be aware that chronic pain is best understood as
a process that evolves over time. The problem results from the entire
progression of the patient's illness, the sociocultural context in which
it occurs, and the interactions between health care professionals and
patients. Health care professionals may inadvertently reinforce illness
behavior. Medical interventions, whether physical, pharmacological,
behavioral, psychological, or surgical, may also affect the illness'
course. In the case of back pain, for example, some potentially negative
effects of treatment include multiple surgery, prescription of drugs
that risk further compromise of function, and excessive bed rest for
patients who would do better by remaining active. Extended periods of
inactivity often exacerbate the problem of back pain physically (by
weakening muscles), psychologically (by making patients feel that
they are sicker than they are), socially (by restricting interpersonal
activities and altering family interactions), and economically (by
removing them from gainful work).
In the treatment and management of chronic pain, and most partic-
ularly in rehabilitation, it is important to distinguish "hurt" from
"harm." Pain patients, especially those with musculoskeletal pain,
may hurt when they exercise or continue their daily routines and
activities (including working), but they may not be harmed by such
activity. Patients must, of course, be carefully evaluated to be sure
that they do not have undiagnosed underlying disease or injury such
that harm could occur as a result of exercise or other activity. Once
this has been established, however, the committee's judgment is that
patients should be encouraged to remain reasonably active despite
their pain. Surgery, especially multiple operations, is rarely indicated
for chronic back pain. In the long run, repeated surgery for chronic
back pain is likely to cause more harm than benefit (see Chapter 101.
Attention must be paid to any psychological or psychiatric disorders
discovered in chronic pain patients, particularly depression, anxiety,
and alcoholism or other substance abuse. As discussed in Chapter 9,
clinical experience suggests that treating these conditions—whether
they are coexisting, contributory, or conseq;uential~an sometimes
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CONCLUSIONS ID RECOMMENDATIONS 283
alleviate the pain. Even in the absence of pain relief, if the accompa-
nying mental disorder or substance abuse problem can be eased, the
likelihood that the patient can be rehabilitated increases.
On the basis of the available evidence, the committee believes that
practitioners are not adequately trained to manage patients with pain,
despite increased attention to this area in recent years. In light of this
conclusion the committee makes two recommendations. First is that a
cadre of physicians should be trained in those aspects of each of the
medical specialties most relevant to pain. This group of experts would
then be available not only to perform the multidisciplinary assessment
and treatment necessary for patients with particularly difficult pain
problems, but also to help train primary care providers who handle the
majority of pain complaints. Because pain patients typically first seek
help from primary care providers, it is important that these health
care professionals understand the nature of pain and become skilled in
assessment, treatment, and referrals. Thus, the second recommenda-
tion is that organizations and boards that review postgraduate train-
ing programs for primary care providers (family physicians, internists,
pediatricians, gynecologists, nurse practitioners, etc.) examine their
accreditation processes to assure that these programs attend to a
number of educational goals so that primary care providers:
· appreciate the complexity of the chronic pain progression and
associated illness behavior and understand the contributions of psy-
chosocial and cultural factors to the process;
~ are aware of commonly overlooked psychological concomitants of
pain, and physical and psychiatric disorders that may account for the
pain or contribute to it significantly, and of the variety of treatment
modalities that may provide pain relief;
· know about the work of practitioners in other disciplines, are able
to make appropriate referrals, and can participate effectively in
multidisciplinary teams;
· understand the potential for an inadvertent adverse impact of
health care providers on the course of chronic pain problems and
disability; and
~ understand the processes by which the medical records of the
treating physicians are used in the disability evaluation process to
determine eligibility for disability.
* ~ ~
Chronic pain, especially muscuToskeletal pain, is a common health
problem that afflicts a substantial proportion of the adult population
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284 CONCLUSIONS ED RECOMMENDATIONS
and interferes with every aspect of their lives. The chronic pain-
disability course is inextricably intertwined with social, psychological,
economic, and cultural factors. As a clinical problem, chronic pain is
often elusive and intractable. As a public policy problem, determining
whether claimants whose pain and dysfunction are not accounted for
by objective physical findings are disabled for work is difficult to do in
an efficient, fair, and reliable manner. Pain is inherently subjective,
there are no thoroughly reliable ways to measure it, and the correla-
tion between the severity of pain and dysfunction is imperfect. Eval-
uation of pain claimants will always contain a subjective element
regardless of the specificity of the rules and regulations developed to
guide disability examiners.
In this report, the Institute of Medicine study committee has
attempted to elucidate the issues and to provide some guidance to the
Social Security Administration and other disability insurers about
how pain complaints might be better handled. In addition, the com-
mittee hopes that its analysis of the many facets of chronic pain and
the disability process provides useful information to researchers,
clinicians, and others about this complex problem.
Representative terms from entire chapter:
pain patients
