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FINAL REPORT OF SANTA FE SUMMIT ’97
Preserving Quality And Value In the Managed Care Equation
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SPECIAL FOCUS REPORTS:
OUTCOME MEASUREMENT FOR
CHILDREN AND ADOLESCENTS & PREVENTION
Section III: Outcomes for
Children and Adolescents with Serious Emotional Disorders
Section IV: A Framework for
Including Prevention
SECTION III. A
SPECIAL SECTION WHICH ADDRESSES OUTCOMES MEASUREMENT FOR CHILDREN AND ADOLESCENTS WITH
SERIOUS EMOTIONAL DISORDERS
This special section was developed after the
initial SANTA FE SUMMIT in recognition of the special methodological and other
considerations necessary to address outcomes measurement in children, adolescents and
families. This initial work focuses on the subpopulation of children most in need of
mental health and substance abuse services.
This work grew out of the OUTCOMES study panel at SANTA FE, and
is included as a virtual stand-alone document. This section models the SUMMIT process from
beginning to end, starting with VALUES, identifying INDICATORS for this risk-adjusted
subpopulation, and then reviewing the relevant MEASURES for this population.
In other sections of the report (PROCESS and ACCESS), the
recommendations for children and adolescents are incorporated into the main text.
AMERICAN COLLEGE OF MENTAL HEALTH
ADMINISTRATION (ACMHA) PROPOSED CHILD OUTCOMES
Introduction
The American College of Mental Health Administration (hereafter
referred to as ACMHA) has endeavored to adapt, for children, adolescents, and their
families, the values-based methodology for identification of service outcomes developed at
the Santa Fe Summit in March of 1997. ACMHA is aware that numerous organizations (e.g.,
the Substance Abuse and Mental Health Services Administration, Center for Mental Health
Services, National Alliance for the Mentally Ill, American Academy of Child and Adolescent
Psychiatry, National Committee for Quality Assurance, American Managed Behavioral
Healthcare Association, various foundation and corporate
collaborators) are developing comprehensive access,
performance and outcome standards for mental health and substance abuse services for
adults and children. The ACMHA Child Outcomes Workgroup focused on outcomes but did not
attempt to specify values, indicators and measures related to child service system access
and performance during its short-lived tenure. For nearly two decades, federal, state, and
foundation sponsored initiatives and policies have supported the development of a
values-based and principle-driven model of service systems for children and their families
known as a system of care (Stroul & Friedman, 1994). Efforts to measure access,
structure, performance, and outcomes in systems of care continue as this report is
written, and efforts of ACMHA and other groups to develop core performance measures for
mental health and substance abuse care for children and families should incorporate
aspects of system structure and coordination shown to improve access to an appropriate
range of least restrictive services in such systems of care.
ACMHA gratefully acknowledges the feedback provided by the
individuals convened by the Substance Abuse and Mental Health Services Administration
(SAMSHA) to review a working draft of this document. Many of these individuals are
participants in one of the afore-mentioned group efforts to develop comprehensive
performance and outcomes standards for child and family mental health and substance abuse
services. Some of their recommendations were incorporated into the attached document;
others were not. Rationale for non-inclusion generally revolved around the extent to which
recommendations represented: (1) significant deviations from the values agreed upon at the
Summit; (2) the concern of a single advocacy, administrative, or academic group (thus
requiring deviation from the consensus process forged at the Summit); and/or (3)
significant increases in data collection and response burden. The most vexing challenge
faced by the Child Outcomes Work Group was that of reconciling measurement-related
concerns with ACMHA’s commitment to brevity, pragmatism "simplicity and
relevance" -- attributes likely to be valued in the marketplace, where the burden and
costs associated with the collection of outcome data will be borne by providers and
consumers. Measurement in the field of child and adolescent mental health outcomes is
still in an early stage. On the other hand, several symptom checklists, global rating
scales, diagnostic interviews, and multidimensional functioning measures have been well
validated. However, most are lengthy, require extensively trained interviewers, or rely
exclusively on clinician judgment. Thus, the group has recommended subscales from
instruments with demonstrated validity, despite the violation of psychometric rigor this
strategy represents. Without support for further validation work, the ultimate value of
outcomes standards will not be realized. In this vein, the "Methodological Standards
for Outcome Measures" prepared by the CMHS Adult Outcome Measurement Standards
Committee provides an excellent overview of the methodological issues to be addressed to
develop outcomes standards that actually reflect treatment-related change (or maintenance
of gains) in consumer populations.
In the material which follows, we have laid out; 1) working
assumptions; 2) values; and, 3) indicators and suggested measures that index these values.
Child Outcomes Work Group Assumptions
The four assumptions that guided the group’s work are
enumerated below.
-
The target population is children and adolescents who exhibit
symptoms and impairments sufficient to persistently and significantly interfere with
functioning across multiple settings (e.g. school, home, and in community settings).
These children might be described as having a serious emotional disturbance (SED) and also
as a "risk adjusted" population. As such, they are distinguished from the
general population of children and adolescents who, at various stages of development,
exhibit problem behaviors and experience emotional distress that are transient in nature.
-
Child outcomes will reflect change at the client
(child and family) level. This approach contrasts with a report card approach that
reflects the status of a managed care entity with respect to certain indicators of an
enrolled population at a single point in time. Assessment over time is essential to
examining whether treatment delivered under the auspices of any care entity (managed or
not), has an impact, and is particularly critical when dealing with children, for whom
changes in behavior, stress, and distress vary (often considerably) over the course of
normative development even in the absence of treatment. Thus, it is recommended that data
pertinent to the indicators be collected at the outset of treatment, during the course of
treatment, upon treatment termination, and up to 18 months year following treatment
termination. for youth receiving treatment during any calendar year.
-
Data will be collected from multiple informants,
including the child’s caregiver and child, archival data from public agencies legally
mandated to collect such data (e.g., schools, juvenile justice agencies, child protection
agencies), and medical records.
-
Each indicator should be supported by some
psychometric data, yet brief, thus requiring careful selection of subsets of items or
scales rather than full measures. Although some valid and reliable measures of child
and adolescent behaviors, symptoms, and functioning exist, and were reviewed by the work
group, many of them require significant administration time and training. Research
regarding the sensitivity of these measures to the experiences of the target
(risk-adjusted) population of youth, and to treatment-related changes within such a
population, is also limited. Moreover, there are no valid measures to index some of the
values articulated at the Summit as they relate to children. The group selected measures,
subscales, and, single-items supported by psychometric data whenever possible, views
further psychometric work as essential to the identification of meaningful but pragmatic
outcomes measures, and recommends that such work be supported once final consensus about
the indicators to be measured is reached.
American College of Mental Health
Administration Child Outcomes Work Group
Consensus Values, Indicators, and Data Sources
VALUE 1::
Youth will reside in the homes of their
families
Indicator: Children and adolescents should have a
stable living situation in a home with a family.
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RECOMMENDED MEASURES:
-
Child’s residence and the restrictiveness of the living
environment rated in accordance with Robert Hawkins and colleagues’ Restrictiveness
of Living
-
Environment Scales (ROLES; Hawkins, Almeida, Fabry, & Reitz, 1992).
-
Number of placement changes experienced by the child
during treatment and at 6 month intervals following treatment termination, up to 18 months
following treatment.
-
Number of days in out-of-home placement during treatment
and at 6 month intervals following treatment termination, up to 18 months following
treatment.
Data Sources
-
Caregiver reports elicited at the outset and termination of
treatment and at 6 month intervals during treatment and up to 18 months following
treatment, the reporting window being the month prior to data collection.
-
Archival data kept by placing agencies for placements occurring
during treatment and at 6 month intervals up to 18 months following treatment, the
reporting window being the previous 6 months. The ROLES rating scale can be distributed to
these agencies, or to the managed care entity collecting the placement data from these
agencies, so that restrictiveness of placements can be scored in a standardized manner.
VALUE 2:
Youth are engaged in productive activity.
Indicator: Youth attend and perform in school (including
vocational).
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RECOMMENDED MEASURES:
Data regarding the following are collected from caregivers and
school records.
1. Number of days absent
2. Incidents of truancy
3. Number of disciplinary incidents
4. Expulsions
5. Pass/Fail within the last year
Caregiver reports are solicited at the outset and termination of
treatment, and at 6 month intervals following treatment, the previous month being the time
frame for reporting. Archival data regarding these items are obtained for the month prior
to treatment, and for 6-month intervals up to 18 months after termination.
VALUE 3:
Youth have good physical and behavioral health.
Indicator: Youth maintain or improve health status and improve
behavioral health status
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RECOMMENDED MEASURES:
Physical Health:
-
Youth and caregiver response (about youth) on Item #1 of the
Children’s Health Questionnaire (CHQ; Landgraf and Ware, 1991, 1996) at the outset,
during, and upon termination of treatment, and at 6-month intervals up to 18 months
following termination of treatment.
-
Youth pregnancy, as reported by youth and/or caregiver
elicited at the outset and termination of treatment, and at 6-month intervals up to 18
months following termination of treatment..
Behavioral Health
-
Reports of suicide attempts made to caregiver, provider, or
admitting hospital during treatment and at 6 month intervals up to 18 months following
termination of treatment.
-
Symptoms related to mood (negative and positive) as
described in CHQ Item 6.1.
-
Symptoms related to concentration, activity, eating,
sleep, antisocial behaviors, as described in the Adolescent Outcomes Module (ATOM;
University of Arkansas for Medical Sciences, 1995).
Substance abuse
Recommended: Drug Preference and Drug Involvement subscales of
the Drug Use Screening Inventory adapted for adolescents (DUSI; Tarter & Hegedus,
1991).
Also proposed: Hair analysis to replace urine screens for youth
involved in court-ordered substance abuse treatment, as hair analysis is less intrusive
and offers more specific findings.
VALUE 4: Youth are safe from criminal victimization, abuse,
and neglect.
Indicator: Youth will not experience victimization, abuse, or
neglect.
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RECOMMENDED MEASURES:
-
Caregiver reports of criminal victimization of the youth prior to,
during, and at 6 month intervals up to 18 months following termination of treatment.
-
Child Protective Service reports of abuse or neglect
prior, during, and at 6 month intervals up to 18 months following termination of
treatment.
VALUE 5:
Youth are not in trouble with the law.
Indicator: Youth in treatment will not be arrested, detained,
or incarcerated.
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RECOMMENDED MEASURES:
Data regarding the following are collected from youth and/or
their caregivers and from the archives of county or state juvenile justice
authorities/courts.
1. Number of arrests
2. Severity of crime coded in accordance with FBI Uniform Crime
Reports
3. Number and length of incarcerations
4. Number and length of probation terms
For youth/caregivers and archival sources the reporting interval
is the month prior to treatment, months during treatment, and month prior to 6 month
intervals up to 18 months following termination of treatment.
VALUE 6:
Youth have social support.
Indicator: Youth have prosocial peers and access to support
from adults.
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RECOMMENDED MEASURES:
Peers
Subscales from the Family, Friends, and Self (FFS) Assessment
Scales (Simpson & McBride, 1992) that tap peer involvement, involvement with peers who
get into trouble, and parent familiarity with peers. Responses follow a Likert type format
ranging from "none" to "all." Youth responses are elicited at the
outset, during, and at termination of treatment, and at 6 month intervals up to 18 months
following treatment termination.
Adult (non parent) support
No valid measure of social support for youth from adults outside
the family has been identified yet.
VALUE 7: Youth perform developmentally appropriate
activities of daily living.
Indicator: Youth performs developmentally appropriate
self-care and life skills.
RECOMMENDED MEASURE:
No valid measure spanning childhood and adolescences was
identified; the Structured Vineland Scale for youth ages 4-5 and 6-12 has good
psychometric properties but requires trained administrators and significant administration
time.
VALUE 8:
Youth enjoy a positive quality of life.
Indicator: Youth report having a positive quality of life.
RECOMMENDED MEASURE:
No valid measure of the construct was identified, and downward
extensions of adult quality-of-life measures were deemed inappropriate for youth, for whom
the nature of the construct is yet to be defined. Thus, a range of constructs potentially
related to a child’s sense of well-being (e.g., child’s self-esteem or
self-efficacy, positive family relations), and valid measures of them were considered.
Most of these are quite lengthy. Section #7 of the CHQ (Landgraf & Ware, 1991,
1996) is relatively brief, and ,although entitled "Self Esteem," it appears to
tap a child’s assessment of quality of life at home, school, and with friends and
includes omnibus questions about life in general, and is offered as a potential starting
point for measurement of the quality of life construct.
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References
Center for Mental Health Services, Adult Outcome Measurement
Standards Committee (1997) Methodological Standards for Outcome Measures (Draft).
Rockville, MD: Author.
Hawkins, R.P., Alameida, M.C., Fabry, B., &
Reitz, A.L. (1992). A scale to measure restrictiveness of living environment for troubled
children and youth. Hospital and Community Psychiatry, 43, 54-58.
Langraf and Ware (1991, 1996).
Child Health Questionnare
--Child Self Report Form 87 (CHQ-CF87). Authors.
Simpson, D.D., & McBride, A.A. (1992). Family, friends, and
self (FFS) assessment scales for Mexican American youth. Hispanic Journal of Behavioral
Sciences, 14,1212-1216.
Stroul, B.A., & Friedman, R. M. (1994).
A system of care
for children and youth with severe emotional disturbances. Washington, DC: Georgetown
University Development Center.
Tarter, R.E., & Hegedus, A.M. (1991). The drug use screening
inventory. Alcohol Health & Research World, 15, 65 - 75.
University of Arkansas for Medical Sciences (1995).
Adolescent
Treatment Outcomes Module (ATOM). Little Rock: Author.
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Acknowledgments
Members of the ACMHA Child Outcomes Work Group are:
Barbara J. Burns, Ph.D., Duke University
Robert Cole, Ph.D., Washington Business Group on Health
Connie Dellmuth, M.S.W., Washington Business Group on Health
Sonja K. Schoenwald, Ph.D., Medical University of South Carolina
Sybil Goldman, Georgetown Child Development Center, also provided
assistance, and
Kimberly Hoagwood, Ph.D., National Institute of Mental Health
made excellent recommendations regarding measures of certain indicators and provided
copies of measures and psychometric data for them. In the end, however, instrument length
and administration training precluded their inclusion -- and that of other well-validated
but lengthy instruments -- in the current report.
The assistance of the Substance Abuse and Mental Health
Administration in general, and of Eric Goplerud, Ph.D., and Dorothy Webman, Ph.D., in
particular, in convening a review group and coordinating feedback mechanisms is gratefully
acknowledged.
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SECTION IV. A
Framework for Incorporating Prevention.
ACMHA is deeply indebted to the National
Mental Health Association for their contribution to the SUMMIT and this report. As noted
above, the NMHA had already begun a consensus initiative focusing on prevention, and we
are pleased to include in this document several sections prepared especially for the
SUMMIT report; additional materials will be forthcoming in a larger, independent document
published by NMHA on this topic. We thank Robert J. Gabriele, Senior Vice-President of
NMHA for his leadership of this effort.
I. The Need for Purchasers to Value Prevention and Incorporate
Overarching Values in Preventive Health Care into Health Care Policies
Purchasers of managed health care services, including all
purchasers for commercial businesses and non-profit organizations and all Federal and
state government payers, want to keep their employees/citizens healthy and productive.
There is a logical continuum of health care for achieving this goal. Treatment and
maintenance services are essential for individuals who have early-stage or chronic
physical or mental illnesses, but the continuum is not complete without prevention of the
initial onset of disorders and problems. Only when high quality services are provided for
the entire continuum will there be a reduction in the incidence, prevalence, and overall
costs of the disorders.
The purchasers of health care services have had the opportunity
to affect a great change in the health status of this country. They are doing this by
broadening the delivery system and incorporating prevention along side treatment and
maintenance. To do this has required several paradigm shifts: from an illness model to a
health orientation, from a discrete intervention model to a holistic orientation, and from
a focus on individuals to a focus on families and how illness in one member puts others at
risk. Until recently, interest in prevention has been focused on physical illnesses and
injuries. Preventive interventions in physical health care have been based on scientific
evidence, and much has been learned about immunizations to prevent childhood diseases and
changes in diet and exercise to prevent cardiovascular problems. Now there is evidence
that risks can also be significantly reduced in the mental health and in physical
illnesses whose onset is primarily related to behavior. There are empirically validated
studies which demonstrate the efficacy, cost-offset, and improved outcomes for a variety
of mental health and medical problems through psychosocial interventions. It is now
possible—and prudent—to incorporate preventive services for behaviorally related
problems into general health and behavioral health systems of care.
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OVERARCHING VALUES:
The over arching values related to
prevention that underlie any system of care that will achieve the purchaser’s goal of
keeping employees/citizens health and productive include the following:
The system of care, including outcomes, must be
operationalized, defined and evidence-based.
There must be aggressive outreach in service delivery.
Access barriers to health care must be eliminated.
Consumers must be involved in a process of self-management and
empowerment with an existing partnership between consumers and purchasers in determining
policy and individual services.
Health care services should build on consumers’ strengths
and increase their potential.
Children and families should be the highest priority.
A risk and resilience model should be used in assessment and
service delivery.
A prime goal of service should be to foster healthy life
development.
Health care should be collaboratively linked to other
community resources.
Risk profiling of important populations is necessary. The
issue of what is important may vary among purchasers and consumers. Risk factors vary in
different populations, but they should be identified at rates predicted by epidemiological
data.
Risk populations should be identified as early as possible
with screening at key access points in the health delivery system.
The interventions that are provided should be appropriate. The
interventions should be associated with the risk profiles of the enrolled population and
should focus on risks (resiliencies) amenable to change.
Wherever possible, the interventions should be based on
identified programs which have a strong evidence base.
Enrollees with identified high risk factors should be engaged
in the interventions, receive the full course of the program, and be encouraged to
maintain their behavioral changes.
For those who receive the preventive intervention, there
should be an enhanced performance outcome. There should be a reduction of risks and
reduction of onset of illnesses in the areas targeted and meaningful to purchasers and
customers.
Provision of these services will affect the management and
finances of purchasers. There will be significant resource (dollars and staff) associated
with risk profiling, risk reduction, and resiliency promotion. Appropriate staff will need
to be hired to provide the services, and they are likely to need additional training.
How Should Purchasers Define Prevention?
The classical public health definition of prevention includes
primary prevention (focused on incidence), secondary prevention (focused on prevalence),
and tertiary prevention (focused on disability). This definition originated at a time when
the etiologies of illnesses were thought to be more straightforward than what is now known
to be true.
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Very few illnesses have a single causal agent that can be
singularly targeted, such as vaccines to prevent polio. The complexity of risk and
protective factors in the etiology of many behaviorally related diseases, both in mental
health and physical health, led a committee of the Institute of Medicine of the National
Academy of Sciences to seek a definition of prevention that would add clarity to this new
knowledge. The committee also realized that by using the term prevention for all health
interventions it is difficult to really know what the targets and content of the
interventions are. The committee formulated a new classification system for interventions
for all of mental health. The system is based on an earlier formulation by Gorden (1985)
for physical health, and indeed the new system is equally applicable to interventions for
physical problems. In the classification system, the word prevention is reserved for those
interventions targeted to a population before the initial onset of a problem or disorder.
Treatment involves screening for already existing disorders and appropriate standard care,
including efforts to avoid relapse. Maintenance involves after-care service. Unlike the
classical public health definition where the use of the word primary implies a type of
hierarchy, this system values all three components equally and recognizes that all are
necessary for a complete system of care.
Purchasers who use this classification system, which has gained
wide acceptance in the mental health field, will more easily be able to track the targets
and content of the full range of interventions it obtains for its employees/citizens. The
risk/protective model is relevant for prevention, treatment, and maintenance, but the risk
factors and protective factors are frequently for initial onset, relapse, and chronic
morbidity.
Why Should Purchasers Value Prevention ?
The Costs of Not Providing Prevention Are Huge.
Of the ten major causes of disability worldwide, five are mental
health and substance abuse problems, with major depression being the first one. Eleven
percent of all disability world wide is due to major depression.
Of the ten major causes of mortality, seven are directly related
to individual behavior (McGinnis and Fogey). The effect of mood on an individual’s
use of tobacco and alcohol is compelling. Those with high depressive symptom levels -- but
not yet major depression -- are much less likely to quit smoking.
There Is the Potential that Prevention Will Be Cost Effective.
There is the possibility that outlays for health care could be
reduced or slowed down. There is both cost effectiveness in the short-term and in the
long-term. As more and more people are in managed health care settings, even long-term
cost benefits might come back to save the purchaser money. The government particularly has
a long-term interest in the public’s health and is also significantly impacted by
cost shifts from one system to the next. For example, with the child Medicaid population,
children with substance abuse and mental health problems frequently end up in the child
welfare and juvenile justice systems. The real long-term cost savings may be in these
areas even more than in behavioral health care itself.
Prevention can have short-term cost benefits that show up
department by department and sector by sector. It has the potential of reducing
utilization rates and secondary consequences/costs. For example, the potential cost
savings from behavioral prevention programs is not going to be just in the behavioral
health care component but in other parts of the system where there are also enormous
costs, such as visits to the primary care doctor for physical complaints and reassurance.
The impact of providing behavioral prevention services must be assessed across general
health and behavioral health areas. Most of the immediate outcome cost savings that have
been documented are short-term in the physical health arena.
There is the possibility is that employee productivity for
businesses in the commercial marketplace could be increased.
The data on depression alone are suggestive of potential
significant savings if effective prevention and intervention strategies are used.
It may turn out to be the right thing to do for the people
being served.
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The only way that prevention will be incorporated into policies
and purchasing contracts is if purchasers attribute to prevention a high value deserving
immediacy and support. The only way that effective prevention will occur is if purchasers
insist that the highest quality programs based on the best scientific evidence be used.
II. A Risk and Evidence Based Framework for Maintaining and
Measuring Prevention Services in Managed Care.
Maintaining and measuring high quality, effective prevention
services in managed care presupposes that a series of underlying decisions have been made
with clarity, integrity, and scientific evidence. These decision points can ensure that
the goals are clear, that the best available science is used to select the prevention
programs, that the programs are delivered to whom they are intended, and that the
interveners are knowledgeable about what they are doing.
The following framework, presented in a logical series of steps,
can lead to the end goal of a managed care company delivering high quality and effective
prevention services to its customers.
(1) The term "prevention" should be reserved for
only those interventions that occur before the initial onset of disorder.
Preventive interventions can be of three types: universal,
selective, and indicated. Universal preventive interventions are targeted to the general
public or a whole population group that has not been identified on the basis of individual
risk. Selective preventive interventions are targeted to individuals or a subgroup of the
population whose risk of developing a disorder is significantly higher than average.
Indicated preventive interventions are targeted to high-risk individuals who are
identified as having minimal but detectable signs or symptoms foreshadowing disorder, or
biological markers indicating predisposition for disorder, but who do not meet diagnostic
levels at the current time.
(2) The target disorders or conditions to be prevented and
the target populations for the preventive interventions should be identified and selected
by the purchasers (i.e., the true payers of the health care plan) in collaboration with
the behavioral health care organization. Thus, the decisions will ultimately reflect the
values of both the purchasers and service providers. Through the imposition of contract
requirements, purchasers will require service vendors to provide quality preventive
intervention services for specific risk groups.
Collaboration between the behavioral health care providers and
the general (physical) health care providers is crucial so that a) the epidemiology of the
covered population is known, and b) preventive intervention outcome measures are not
limited to only one area of health.
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Issues to be considered in the selection process for targeted
disorders and conditions and targeted populations include: what disorders or conditions
cause the highest cost for the purchaser; based on epidemiological data, what disorders or
conditions are most prevalent in the health care population and can high risk groups be
identified, and what disorders or conditions cause the most mortality and morbidity for
the individual enrollee and his or her family. Morbidity can be reflected in productive
work days lost, school days missed, quality of life reduced, and in associated costs,
including physical as well as behavioral health care costs and costs borne by other
service sectors such as social services, education, and justice. Potential cost-offsets of
providing preventive services rather than later treatment and maintenance services should
be estimated whenever possible.
(3) Only disorders or conditions for which there are known
malleable risk and protective factors should be targeted.
The science regarding risk and protection is large, changes
rapidly, and varies by disorder. Sometimes single risk factors can be identified and
targeted, but more often it is the accumulation of risk factors, ideally with the
weighting of the relative importance of each factor, that will yield the most potential
for prevention of later onset of a single or multiple disorders. The use of a risk
reduction orientation within managed care will increase the likelihood that the preventive
intervention services will be effective. Science-based, authoritative resources, such as
those provided by the National Academy of Sciences, the US Preventive Services Task Force,
the Cochrane Collaboration, and many federal agencies and professional organizations,
should be utilized to identify those disorders or conditions that have an evidence base
sufficient to justify mounting preventive interventions.
(4) Only conditions for which there are known, science
based preventive interventions should be targeted.
Authoritative sources should be utilized. In addition to those
listed above, meta-analyses and registries of prevention trials should be reviewed. The
preventive interventions that are chosen should have a realistic chance of being delivered
at a reasonable cost within a health care setting and/or provide a significant cost
offset.
(5) Individuals and families should be screened for the
occurrence of risk fctors that aare associated with the first onset of a disorder or
condition.
Screenings must be science based and should include biological
factors (including genetic history), psychosocial factors, and early signs or symptoms
that do not yet meet full criteria for diagnosis. Protective factors that could offset
some degree of risk should also be assessed. The screening tools must be as reliable,
valid, and efficient as current science permits.
The decision regarding whom to screen is critical. The goal is to
be efficient but not miss those with high risk profiles. Members of high risk groups could
be identified based on a single and apparent risk factor, such as those who have recently
lost their jobs or been
diagnosed with a serious illness or children whose parents are
alcohol dependent (referred to here as Screen A) and then these identified individuals
could be screened more extensively for other risk factors and for protective factors
(referred to as Screen B). For example, persons recently diagnosed with a fatal illness
could be screened for early symptoms of depression, marital conflict, job stability, and
coping style. Adolescents who are known to have a substance abusing sibling could be
screened for school attendance and performance, mood stability, coping style, and
substance use.
Risk assessment tools are more readily available for some
conditions than for others. For example, there are some current tools ready for use in
screening for risks associated with first onset of depression and substance abuse. The
availability of such tools should not act as a constraint because if the scientific
evidence regarding risk factors is available, the screening tools can be developed.
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Screening for risks associated with onset of substance abuse and
mental health problems introduces critical issues regarding fairness, labeling, and
privacy. The key is for an individual to not get penalized for an assessment of high risk
but to get rewarded for behavioral changes that lead to positive health outcomes. Risk
profiles should receive the same privacy protections that all health records are accorded.
The dual levels of screening that are described above will
provide point prevalence data regarding risk factors for particular disorders and
conditions for specific populations within the identified health care population. They
will also provide point prevalence data on those with already existing disorders.
(6) All those identified through screening (levels A and B)
as being at high risk for developing a particular disorder or condition must be offered
the preventive intervention to prevent that condition. If they accept the offer, the
preventive service must be provided.
The preventive interventions should be implemented fully,
following available protocols.
Screening for risk factors for onset of a disorder or condition
is likely to uncover some individuals who already have the full disorder or condition,
such as unipolar depression, substance abuse, or HIV infection. Referral for further
assessment and treatment for these individuals is essential.
(7) Prevention interveners must be thoroughly trained in
the relevant risk assessment tools and in the implementation of each specific preventive
intervention that is delivered.
Training will help ensure that the programs are delivered to the
appropriate high risk groups and that standardized full implementation with fidelity to
the original program designs is achieved. Ongoing supervision of front-line interveners is
desirable to maintain enthusiasm, ensure fidelity, and decrease personnel turn-over.
(8) The following process and capacity measures (sometimes
called intermediate goals) should be documented:
Percentage of total personnel who have received training in risk
assessment and preventive interventions; the total number of prevention interveners; and a
description of the type and method of training received.
Percentage of total enrollees who are informed regarding risk
identification and the provision of preventive services for mental health problems and
substance abuse within the
health care organization; a description of the type and method of
communication, such as newsletters, pamphlets, or discussion with a service provider.
Percentage of the health care population screened (levels A and
B) with assessment tools for risk factors associated with first onset of targeted
disorders or conditions; a description of the tools, methods, and results (including
gender, age, health care usage, and risk status).
Percentage of the health care population who self-refer for
preventive services; a description regarding what services are most frequently requested.
Of those who are screened (levels A and B) and determined to be
at high risk, the percentage who are offered and referred to preventive services within
the health care organization.
Percentage of those who utilize the prevention services,
including those who receive part of the program and those who receive the full
intervention; a description of the preventive services.
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(9) The intermediate performance measures, also known as
proximal outcomes, should focus on risk status within the targeted population. Change or
lack of change on the targeted risk factors should be documented for each individual and
the risk population as a whole (the latter is the incidence of risk factors).
For example, measures could include fewer depressive symptoms in
a high risk but non-clinical population who received a behavioral/cognitive preventive
intervention, fewer incidents of reported unprotected sex among adolescents who received
life skills training, and higher birth weights in infants whose mothers had been home
visited as part of prenatal care.)
These intermediate performance measures should be collected and
recorded with systematic regularity, such as every six months for measures related to
depression in the elderly. A consistent reduction in risk over time is likely to lead to a
positive distal outcome, also known as a key performance outcome measure.
(10) The key performance measures, also known as distal
outcomes, should focus on the primary disorder or condition to be prevented. It is these
outcomes that are the ultimate targets of the interventions.
Such measures could include prevention of premature delivery and
low birth weight; prevention of the onset of unipolar depression during an
adolescent’s high school years; prevention of HIV infection during an
individual’s college years; prevention of teenage pregnancy; prevention of substance
use during a child’s middle school years; and prevention of unipolar depression in
the year following an individual’s first heart attack.
All measures must be quantifiable, easily understandable, and
valid. [Meaningful, measureable and manageable in the ACMHA taxonomy.] Because most
outcomes of prevention services are not absolutely tied to a specific date for onset, an
explicit time frame should be part of the outcome measure. For example, birth weight has a
specific time for onset, but depression does not. Prevention of depression during an
academic school year or during adolescence is a realistic goal whereas prevention of
depression for a lifetime is not. For some individuals prevention may be a delay of onset,
but this too can save years of suffering and cost. Also, there appear to be critical
periods in life development when preventive interventions may be especially potent. For
example,
preventing major depression during a woman’s pregnancy and
the following year may have major effects on infant health and development.
Comparison should be made between the outcomes obtained in the
health care setting and the original research. If possible, incidence and point prevalence
data for the targeted disorders and conditions should be gathered on a periodic basis.
Collection of additional data regarding distal effects, especially on general health and
use of other medical services, is encouraged. These quantitative performance measures
should be used to track progress over time toward each specific objective originally
identified by the health care purchasers in collaboration with the behavioral health care
organizations.
(11) Documentation of the costs of risk assessments and
prevention programs should be collected not only for the whole serviced population but
also on an individual basis.
Any future cost-savings analyses will require these figures.
The screening for risk factors will yield some positive cases of
already existing disorder, and these individuals will be referred to treatment. Therefore,
somewhat ironically, screening for prevention can result in higher treatment costs for the
health care organization, and these extra costs need to be considered.
Summary
The use of the above step-by-step framework provides a reasonable
assurance that the prevention services that are delivered will be of high quality and will
be effective. The framework does presuppose that the health care organization has the
capacity to carry out these tasks.
A social marketing approach will be needed to convince providers
that preventive services and this framework for ensuring quality and effectiveness should
be part of their contracts with health care organizations. Purchasers will need to be
convinced that prevention programs: have face validity; have an attractiveness that will
appeal to customers; have performance measures that can be quantified; have the potential
to pay-off as investments; and have a sufficient universality that they will appeal across
public and private sectors.
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