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This is an excerpt of a chapter included in the following text and is reproduced here with permission of the publisher Ahab Press, Inc.

Deutsch, P., Allison, L., & Kendall, S. (2004). Research design and statistics: A practical guide to reading research literature and practice guidelines. In P. Deutsch & H. Sawyer (Eds.), A guide to rehabilitation, pp. 9B.1-9B.88. White Plains, NY: Ahab Press, Inc.

Reliability and Validity for Life Care Planners

Why are we, as clinical practitioners, interested in research aimed at validating the process of life care planning? There are multiple answers. Through research we can improve the process, raise standards, help to answer ethical questions and resolve ethical dilemmas. Perhaps most importantly we protect the patient’s access to life enhancing care through this very useful case management tool.

Ensuring the future of life care planning is essential to protecting the catastrophically injured patient’s access to quality of life enhancing care through visionary case management practices. In light of the recent challenges presented by the Daubert rulings, the future of life care planning as a forensic tool is dependent upon validating the Life Care Planning process in the eyes of the court (Countiss & Deutsch, 2002).

We can do this through definitive research attesting to consistent methodology employed by life care planning professionals that is reliable, valid and relevant to the individual patient’s case. Because we intend to objectively validate the utility of life care planning as a tool in case management, let’s first consider the facets of reliability that are prerequisite to validation of life care planning.

Issues Related To Reliability

Demonstrating the reliability of life care planning as a case management tool is at the heart of validating life care planning as a specialty area of practice. Reliability is comprised of the dependability and consistency of the life care planning process to yield similar results under similar conditions. In other words, life care plans (LCPs) are reproducible. If life care planning is a reliable tool in case management and the provision of patient care, then the results of a given LCP can be consistently replicated. We can convincingly demonstrate reliability of life care planning by appropriately designed research studies. First we need to discriminate between two aspects of reliability: intra-planner and inter-planner reliability (Bellini & Rumrill, 1999).

Intra-Planner Reliability

Intra-planner (a.k.a., Intra -rater, or Intra -observer) reliability provides internal consistency to the process much like “test-retest”. Intra-planner reliability attests to the consistent application of an individual life care planner's processes and the reliability of the results of that process. Given similar circumstances, the process of developing the LCP recommendations and cost estimates are the same. Certainly, similar forms and procedures would be used for collecting the information needed for similar cases. But intra-planner reliability goes beyond that type consistency.

Because the LCP is a document that makes recommendations for case management and estimates the costs of those recommendations, it will produce similar recommendations and cost estimates given patients with similar disabilities and life circumstances. Differences between the individual patients, their families, and geographic locations would be appropriately noted as modifying factors in the comparisons.

For example: The basis for establishing the skill level involved in the provision of care for a C-5 tetraplegic should remain consistent regardless of geographic location and irrespective of subsequent development of cost data. What is being validated is the basis for establishing need for care, level of care, and availability of care. Costs are incidental to these issues. It does not vary depending upon the geographic locale or any other predisposing factor for bias.

The significance of intra-planner reliability is that a given life care planner will produce the same life care plan whether it is produced in Indiana or California, whether it is produced as an Independent Medical Examination (IME), or as a forensic tool of the defense or plaintiff, or even whether funding is available to implement the recommendations.

Inter-Planner Reliability

Inter-planner (a.k.a., Inter -rater, or Inter -observer) reliability provides external consistency to the process. Inter-planner reliability indicates that life care planning is a standardized process, consistently applied by life care planners across the country in a similar manner. Given similar patient disabilities and circumstances, life care planners, in general, present similar recommendations and cost estimates. Wide discrepancies do not occur between plans generated by different life care planners for the same patient.

Let’s consider an example demonstrating these concepts:

What if Dr. Smith who always works for the plaintiff, always gets his cost estimates for custom modification of a vehicle to accommodate a wheelchair from Jaguar, Porsche, and Mercedes? Dr. Smith could show a tight range of costs, and his results would be consistent and dependable over time, for each and every LCP he develops.

On the other hand, his colleague, Dr. Jones, only accepts defense work. Dr. Jones consistently gets his cost estimates from Bubba's Junkyard, Billy Bob's Pre-Owned Palace, and Honest Eddie's. [Note: Honest Eddie's motto is "We'll beat any deal or give it to you for free," so Dr. Jones always checks with him last.]

Dr. Jones’s results are also consistent and dependable over time, for each and every LCP he develops. However, reliability between the LCPs provided by Dr. Smith and Dr. Jones does not exist. The results vary depending upon which life care planner writes the LCP!

Validity is Case Specific

Dependability and consistency in applying the life care planning process will reliably yield similar results under similar conditions. While general reliability is necessary to establish validity, it is not entirely sufficient. Validity is case specific. A standard, "valid" life care plan for all people who are infected with HIV does not exist. Each LCP must be valid for the individual for whom it was developed. If life care planning is a valid process, then a good LCP will accomplish its mission: to decrease the frequency and severity of medical complications for a particular patient, avoiding case management by crisis intervention, and improving the patient’s overall quality of life. Establishing the validity of the life care planning process shows that the basic tenets of life care planning are sound.

Issues Related To Validity

Validity has four major aspects: face validity, content validity, criterion-related validity and construct validity. These four aspects can be used as lenses through which to view validity. For validity to be established, evidence of each of the four aspects should be demonstrated (Bellini & Rumrill, 1999).

Face Validity

Face validity in life care planning refers to whether the LCP "looks like" it appropriately details the disability-related needs of a given individual. Although face validity is not evidence of whether or not the LCP accurately presents an individual's needs, it is still important to life care planners.

Because the LCP is a tool for educating people about disability-related needs, if it does not appear to represent those needs accurately, then family members, judges, juries, insurance adjusters, etc. may not accept it as a useful instrument. The establishment of face validity speaks to the lay audience.

Content Validity

Content validity relates to whether the elements included in the LCP actually address all the disability-related needs of an individual with a particular disability and set of circumstances for enhancing their life across their life span. The specific LCP should address all of a particular patient’s needs without providing for extraneous treatments.

For example, an annual urological exam would be an important part of the LCP for a person with a spinal cord injury, but not for an individual who has had her leg amputated. Furthermore, to find a meaningful and useful life, the patient’s needs could reasonably be expected to extend beyond medical care. These needs may include vocational education and retraining.

One approach to examining content validity is to have a group of recognized experts come to consensus about which items are most appropriate. Relating your recommendations to published treatment protocols and standards of care could help you to demonstrate the content validity of elements in your life care plan. An excellent reference is Outcomes Following Traumatic Spinal Cord Injury: Clinical Practice Guidelines for Health-Care Professionals issued by the Consortium for Spinal Cord Medicine (July 1999).

Criterion-Related Validity

Criterion-related validity is the gold standard of validity. Evidence of criterion-related validity is presented when a relationship exists between the LCP’s recommendations and estimated costs and some outside measure, or criterion, relevant to those recommendations and estimated costs. There are three types of criterion-related validity: concurrent validity, predictive validity, and convergent and divergent validity.

Concurrent Validity

Concurrent validity refers to the relationship between elements of the LCP and objective findings available at the time the plan was developed, (concurrent “at the same time”).

If the client fits the demographic profile and circumstances of individuals studied in Aging With Spinal Cord Injuries (Whiteneck, Charlifue, Gerhart, et al., 1993), it should be possible to demonstrate similarity between the LCP’s recommendations and the recommendations made for the individuals in that published study. As medical research and education advance, the standards of practice for life care planning must necessarily evolve to keep pace. Demonstrating concurrent validity shows that the specific LCP meets the current standards of practice and is not obsolete.

Predictive Validity

Predictive validity is of greatest interest to those utilizing the LCP for reserve setting, budgeting, or in a forensic setting. Demonstrated predictive validity answers these questions:

1) Do the recommendations and cost estimates accurately predict the services that will be needed by the individual for whom the plan was written, and at what cost?

2) If the LCP’s recommendations are implemented in full, and the LCP predicts they will help reduce the incidence, frequency, severity, and duration of complications, will the research study demonstrate a difference from the occurrence of those complications in patients with similar injuries but without LCPs?

3) If projections of life expectancy are included in the LCP, are those projections accurate?

Predictive validity examines the quality and quantity of follow-up on patients with whom LCPs have been completed. The goal is to re-examine these patients and update the plans later in time to establish predictive validity.

Convergent and Divergent Validity

Convergent and divergent validity are specific types of criterion-related validity. They could be addressing either concurrent or predictive variables. Essentially, if you have evidence that two things that should be similar to each other, are similar to each other (converge) you have evidence of convergent validity. Likewise, if two things that should be different from each other, actually are different from each other (diverge), you have evidence of divergent validity.

Evidence of convergent validity is demonstrated when the recommendations in a LCP for an individual who has lower extremity paralysis are similar, in some ways, to those in a plan for an individual who has lower extremity amputation. On the other hand, the recommendations for an individual who has congestive heart failure would be expected to differ from those of an individual who has a hearing impairment. If the life care plans for these two individuals are not different, then the divergent validity of the two plans is not demonstrated.

Construct Validity

Construct validity is the essential validity to establishing that the basic tenets of life care planning are sound and are evolving contemporaneously with related health care fields. Construct validity might best be understood as theoretically related validity. Evidence of construct validity is presented when a theory or hypothesis predicts a particular finding, and the results of an analytical study correspond to that prediction.

Although life care planning is not a theory per se, many of the underlying tenets of life care planning could be considered theoretical propositions. For example, we operate under the assumption that the development and implementation of a good LCP will decrease the incidence of medical complications, and increase an individual's quality of life. To test that assumption, we could compare the rate of complications for people who have implemented a LCP with those who did not have a LCP. We could also interview individuals with implemented LCPs and individuals without such plans, and ask them questions about their quality of life.

Consideration of construct validity leads us to conclude that validation must be an on-going process. There are many different aspects of validity most of which change with time. The large number of variables involved in LCP complicates the process of researching reliability and validity relative to life care planning. The only solution is to reduce the number of variables in any given research project and increase the number of projects being conducted.

No single study will conclusively validate life care planning once and for all. Every research study provides another piece of evidence establishing life care planning as a valid case management tool. We need to begin collecting elements that contribute to establishing the validity life care planning’s place in the management of the catastrophically injured patient’s case.

References

Bellini, J. & Rumrill, P. (1999). Research in rehabilitation counseling: A guide to design, methodology, and utilization. Springfield, IL: Charles C. Thomas.

Consortium for Spinal Cord Medicine. (July 1999) Outcomes Following Traumatic Spinal Cord Injury: Clinical Practice Guidelines for Health-Care Professionals. Paralyzed Veterans of America.

Countiss, R. N. & Deutsch, P. M. (2002). The life care planner, the judge and Mr. Daubert. Journal of Life Care Planning, 1(1), 35-43.

This is an excerpt of a chapter included in the following text and is reproduced here with permission of the publisher Ahab Press, Inc.

Deutsch, P., Allison, L., & Kendall, S. (2004). Research design and statistics: A practical guide to reading research literature and practice guidelines. In P. Deutsch & H. Sawyer (Eds.), A guide to rehabilitation, pp. 9B.1-9B.88. White Plains, NY: Ahab Press, Inc.

Reading and Interpreting Life Care Planning Literature

Ultimately, the professional should be prepared to critically evaluate a study reported in the literature and apply that new knowledge to their professional practice and future investigative endeavors. The reader should read and interpret the published literature in the professional field to determine for his/herself what to take away from the reading rather than accepting carte blanche the conclusions presented by the research investigators.

The research concepts presented in this text offer a foundation for developing a general appraisal. Some critical questions a reader might ask of a published report include:

*How does the research design, methodology and statistical analysis affect outcome?

*Has the study been powered appropriately?

*What is the period of observation? If comparisons between LCPs were made after 5 months and the updated LCPs were completely congruous with the original LCPs, the meaningfulness might be suspect. However, if the window of observation were extended to 5 years, and the same result obtained, it might be meaningful.

*Was the research protocol appropriate and was adherence to it stringent?

*How credible, ethical and moral is the investigator?

*Does this researcher hold reputable credentials and is the work supported by a research institution?

*Has the author addressed the points that a study needs to address?

Elwood (1998) presents guidelines for critically evaluating and interpreting specific types of research studies.

The purpose of the published literature is to inform the public in general and future research efforts in particular. Therefore, it is paramount that future investigators and readers are equipped to read the work and parse out for themselves the strengths and weaknesses of the research, to enable the specialty practice of Life Care Planning to move forward into the future.

Developing a Research Study Proposal

Inexperience does not preclude a professional from entering the arena of scientific research. All investigators were once novices. In developing a research study proposal, seasoned mentors serve an important function for experienced as well as novice investigators. They can guide the researcher through the investigative process and give key direction. Sometimes the key direction is an introduction to the person who can help at a particular impasse. Sage mentoring is an indispensable resource to support the professional who embarks upon the scientific course of investigation.

A second essential resource to facilitate research efforts is database accessibility. Access to larger caseloads may be obtained through research institutions such as The Foundation for Life Care Planning Research. This foundation’s purpose is to help develop research proposals, provide opportunities for mentoring, and access to significant databases. For the professional who is developing a research study proposal, The Foundation for Life Care Planning Research offers important support.

Suggestions for Further Reading: Instrumentation and Data Collection

Bourque, L., & Fielder, E. (1995). How to conduct self-administered and mail surveys. Thousand Oaks, CA: Sage Publications.

Buros Institute. (2003). Mental measurements yearbook (15th Ed.). Buros Institute of Mental Measurements.

Fink, A. (1995). How to analyze survey data. Thousand Oaks, CA: Sage Publications.

Fink, A. (1995). How to design surveys. Thousand Oaks, CA: Sage Publications.

Fowler, F. (1993). Survey research methods. Thousand Oaks, CA: Sage Publications.

Frey, J., & Oishi, S. (1995). How to conduct interviews by telephone and in person. Thousand Oaks, CA: Sage Publications.

McLaughlin, P. (1990). How to interview: The art of making questions. North Vancouver, B.C.: International Self Counsel Press.

Stourthamer-Loeber, M., & Bok Van Kammen, W. (1995). Data collection and management: A practical guide. Thousand Oaks, CA: Sage Publications.

References

Elwood, M. J. (1998) Critical appraisal of epidemiological studies and clinical trials. (2nd ed.). Oxford: Oxford University Press.

This is an excerpt of a chapter included in the following text and is reproduced here with permission of the publisher Ahab Press, Inc.

Deutsch, P., Allison, L., & Kendall, S. (2004). Research design and statistics: A practical guide to reading research literature and practice guidelines. In P. Deutsch & H. Sawyer (Eds.), A guide to rehabilitation, pp. 9B.1-9B.88. White Plains, NY: Ahab Press, Inc.

Ethics in Research

As practitioners and researchers, we have a responsibility to protect the research subject from potential harms, including psychological harm. This responsibility includes preserving the privacy and confidentiality of the patient’s information. Federal regulations aimed at assuring these safeguards govern research.

Maintaining the security of the research databank is a separate concern; that only ethical research is conducted using the information in the databank. The data should not be available for “junk” or unscrupulous scientific endeavors. Finally, the conduct of research carries with it the ethical mandate to make public the findings of the scientific study, (Bellini & Rumrill, 1999; Brody, 1998; Dunn & Chadwick, 1999; Piantadosi, 1997).

Privacy and Confidentiality

One way to assure the confidentiality of the patient’s records is to remove the identifiers from the records. Alternatively, the identifiers can be dissociated from the records and the key to the dissociation process kept under lock and key as privileged information. These safeguards notwithstanding, informed consent for the study should be obtained from the study’s subjects as part of the eligibility of subjects for inclusion in the study.

Informed Consent

Subjects, who are vulnerable to manipulation and abuse such as the very young or old, the impoverished, the sick or disabled, etc., are owed special protection by medical researchers (Brody, 1998; Dunn & Chadwick, 1999). By definition, all subjects involved in studies validating the life care planning process are vulnerable and therefore owed special protection. The informed consent process informs the subject of the purpose of the study and the risks to the subject. The informed consent document requires the subject’s acknowledgement and is important in assuring privacy and confidentiality to the study’s research subjects.

Unscrupulous or junk science is never in the best interest of society as a whole. The databank available within the many caseloads of life care planners should only be available to competent, ethical researchers who will produce credible research studies. Academic institutions or private research foundations can function as gatekeepers in permitting access to databanks held in their trust for appropriately designed and executed research studies.

Institutional Review Boards

The Institutional Review Board (IRB) of the research conducting institution is charged with administering research according to the Federal regulations. Some types of research are exempt from Federal regulation, however, the exemption must be certified by the IRB. The IRB provides ethical review of research protocols and informed consent forms, primarily to assure the protection of the subjects, but also to assure quality control of the research itself. This process also essentially limits access to data banks to authorized researchers (Brody, 1998; Dunn & Chadwick, 1999; Piantadosi, 1997).

IRBs provide two other services. Administrative IRBs are established to review proposals for research, applications for grant funding to perform research and contractual arrangements to conduct research with the institution. Other IRBs exist to provide for the peer review process in publication of research study results.

Publication of Results

Publication of results is ethically mandated. Whether the results of a study are negative or positive, the mandate holds. Research uses valuable societal resources and the information garnered is held to be public domain. If results are not published, then the study may be repeated needlessly by other researchers, thus wasting scarce research resources. The most wanton waste is the unavailability of the research resources to move the scientific knowledge base forward (Dunn & Chadwick, 1999).

References

Bellini, J. & Rumrill, P. (1999). Research in rehabilitation counseling: A guide to design, methodology, and utilization. Springfield, IL: Charles C. Thomas.

Brody, B. A. (1998). The ethics of biomedical research. New York: Oxford University Press.Dunn, C. M. & Chadwick, G. (1999). Protecting study volunteers in research: A manual for investigative sites. Boston: Center Watch.

Piantadosi, S. (1997) Clinical trials: A methodologic perspective. New York: John Wiley & Sons.

This is an excerpt of a chapter included in the following text and is reproduced here with permission of the publisher Ahab Press, Inc.

Deutsch, P., Allison, L., & Kendall, S. (2004). Research design and statistics: A practical guide to reading research literature and practice guidelines. In P. Deutsch & H. Sawyer (Eds.), A guide to rehabilitation, pp. 9B.1-9B.88. White Plains, NY: Ahab Press, Inc.

Introduction to Evidence-based Practice

For more than two decades, clinical practice guidelines have been a source of interest for health insurance carriers and government providers (Medicare, Department of Veterans Affairs, etc.) seeking to reduce health care/pharmaceutical costs, improve quality assurance measures, and to reduce wide variations between clinical practice settings.

Wyer (2002) asserts that while clinical practice guidelines offer direction for practice and decrease variations between practitioners, evidence-based medicine integrates research findings and clinical evidence which ultimately supports or refutes the current principles of care.

Definition

Sacket, Rosenberg, Gray, Haynes, and Richardson (1997) define evidence-based medicine as, "...the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research."

The Evidence-based Medicine Resource Center (New York Academy of Medicine and American College of Physicians, 2002) states:

“Evidence-based medicine’s ultimate application is at the level of the individual clinician's decisions about managing patients.† It is an explicit approach to problem solving and continual professional learning which requires the use of current best evidence in making medical decisions about individual patients. †To achieve evidence-informed decisions, the health practitioner should:

*Develop a focused clinical question concerning the patient's problem(s)

*Search secondary databases and the primary literature for relevant articles

*Access the validity and usefulness of those articles

*Judge the†relevance to the individual patient

*Implement the findings in patient care.”

Evidence-based medicine is not a “new” concept in the field, but may be an effective methodology for evaluating and developing clinical practice guidelines and evaluating research literature within healthcare fields. Rather than relying solely upon one’s personal clinical experience, professionals are encouraged to consult research literature when making patient recommendations.

The evidence-based approach is consistent with the basic tenets and methodologies of life care planning which state that plan recommendations must have a basis in research literature which is relevant to the specific patient for whom the plan is developed. This approach is also consistent with other health care entities and is sometimes referred to as “evidence-based health care” or “evidence-based practice.”

O’Rourke (1997) points out that the evidence-based approach parallels clinical practice in that both:

*Are about using rather than doing research

*Aim at improving healthcare delivery and raising standards

*Consider the use of resources

*Focus on the range of outcomes by insisting on explicit end points

*Are tools for delivering education

*Are useful for standard setting

Professional Skills

Most professionals coming to the specialty of life care planning will have had experience reviewing and critiquing research articles as one component of undergraduate/graduate preparatory academic programs. Continuing education, professional development activities, and continuous research literature review are essential responsibilities of life care planners. TheAmerican Medical Association (1992) delineates the following skills as being necessary inorder to fully utilize research literature. The ability to:

*Precisely define a patient problem

*Determine what information is necessary in order to resolve the problem

*Conduct an effective search of the research literature

*Select the most relevant studies, consider in patient-specific information

*Evaluate the validity of research studies

*Communicate the findings of research studies, strengths and limitations, and relevance to others

*Apply research data to the patient problem

Life care planners attend to the pathophysiology of injury as well as the cognitive, emotional, and interpersonal consequences of long-term disability. When referencing clinical practice guidelines and research literature, life care planners must also take these factors into consideration.

Evidence-based Methodology and Life Care Planning

By applying an evidence-based approach to research involving patient-specific plan recommendations, life care planners may conduct successful literature reviews.

Step One: Identify the Patient Problem

Patient Characteristics and Demographics

The more precisely you are able to define the patient and his/her limitations, the more productive your literature search will prove to be. Many of the data points will be identified through a review of patient records and the clinical interview and history.

Functional Limitations

In addition to the patient’s specific medical diagnoses, life care planners should assess the functional limitations (physical, emotional, cognitive, interpersonal, vocational) imposed by the disability. Both the medical diagnosis (e.g., Projected Evaluations, Therapeutic Modalities, Medications, etc.) and the functional limitations (Aids for Independent Functioning, Home Furnishings and Accessories, Recreation and Leisure, etc.) are addressed in the life care plan.

Focus of Research

The SUNY Downstate Medical Center (2000) provides an excellent online introductory course to the basic methodology of the evidenced-based approach. It is suggested that, in addition to patient-specific data, the patient’s problem should clearly defined before beginning a literature search. The following classifications were extracted from the Center’s website (http://servers.medlib.hscbklyn.edu/ebmdos/toc.html):

Therapy: Therapy problems are questions about what treatment, if any, to give a patient, and what the outcomes of different treatment options might be.

Diagnosis: Diagnosis problems are questions about the degree to which a particular test is reliable and clinically useful, generally asked in order to decide whether a patient of yours would get enough benefit from the test, on average, to justify having it done. Most articles on diagnosis compare the results of the diagnostic test being studied to the results of another standard test that is regarded as being definitive - a “gold standard” test.

Prognosis: Prognosis problems are questions about a patient's future health, life span, and quality of life in the event that s/he chooses a particular treatment option. For instance, how do the life span and quality of life of an elderly patient undergoing surgery for prostate cancer compare with those for a similar patient who chooses not to undergo the surgery?

Harm: Harm problems are questions about the relationship between a disease and a possible cause. For example, does a diet rich in saturated fats increase the risk of heart disease, and if so, by how much?

Most of the questions asked by life care planners would be considered to be prognosis oriented since our work focuses on the long-term needs of patients.

Be cautious, however, that you do not attempt to make recommendations which are beyond your area of licensure/certification. The purpose of performing patient-specific research is not to make an independent assessment or diagnosis of the patient’s condition, but to illustrate the basis for your recommendations. When reporting the conclusions of research, life care planners should make certain that it is presented as an educational component of the process, not as a prescription for specific medical treatments or interventions for which you are not qualified to make.

Step Two: Begin the Literature Review

Using reliable Internet sites for statistics/data, current texts, peer-reviewed journals, and other sources, your first choice in locating articles is to find those which employ randomized, controlled (true experimental or quasi-experimental) designs which address the needs of the patient with whom you are working. Experimental research designs are preferable to others because they represent the research design types having the highest degree of control. Unfortunately, for most of the topics life care planners are interested in researching, randomized controlled trials are ruled out for ethical reasons.

When true/quasi-experimental studies not available within your particular area of interest, carefully evaluate the designs of those you chose to review. Recall that each research design type and methodology has benefits and limitations which may impact the validity of results.

Consider the Relevance of the Study

Are the participants similar to your patient? If so, to what extent? Can the results of the study be generalized to your patient?

Is the treatment/intervention feasible and/or available to your patient?

Consider the Validity of the Study

As life care planners, we are seeking articles which provide the best possible evidence to guide our recommendations; we are seeking validity in the research design, methodology, analysis, and interpretation.

Are subjects randomly assigned to the different treatment groups?

Random assignment allows for the most stringent control of factors (i.e., age, sex, comorbid conditions, investigator bias, etc.) because they are, theoretically equally distributed among the participants in all groups.

Do the subjects, researchers, and data analyzers know which treatment was given to a particular individual?

Were all the study subjects accounted for at the end of the study?

What are the results?

Within the body of literature, there are many studies reporting statistically significant, but clinically irrelevant results.

Step Three: Evaluate the Research Evidence

Throughout this chapter you have been practicing strategies for evaluating the information provided in published research studies. Identifying whether a specific study is valid and practically significant is absolutely necessary, but not sufficient to determine whether it is of use to you; its relevance to the patient is paramount. Without relevance, the results of the study are meaningless to the outcomes of the patient with whom you are working.

Life care planners must make use of their knowledge of research design, methodology, data collection, analysis, and interpretation in order to answer the question: Is this study relevant to my patient?

The following questions were extracted from the SUNY Downstate Medical Center (2000) website:

Are the People in the Study Like My Patient?

You want a study in which the patients are as like your patient as possible, in terms of variables such as:

*Age, general state of health, type and severity of disease process, time in the course of the disease

You will rarely find a study with patients exactly like yours, but if they are too different you may want to spend some time looking for another study.

Did the Study Cover All Aspects of the Problem?

Most medical problems have many different aspects to consider when deciding on a treatment or course of action for a patient. Look for studies that deal with all the aspects that are of importance to your patient. For instance, a study may show that a treatment is effective for a certain condition, but it does not address the treatment's side effects. Or a study may indicate that one treatment provides patients better pain relief than another, but may not identify which of the treatments most effectively treats the underlying condition.

In cases like these, you will want to look for other studies that answer the questions which were not addressed by the first study. If you are unable to locate such articles, be aware that you need to fill in the gaps using your own judgment or the recommendations of members of the treatment team.

Were the Groups Selected in an Impartial Way?

The paper should describe in detail how the groups were selected, and the method should be designed so that the groups are as similar as possible in every way except for the one being studied.

If this is not done, then any results of the study could just be due to the initial differences between the groups. For instance, a group of physicians studied air pollution levels and mortality in six U.S. cities (Citation: Dockery et al. 1993. An association between air pollution and mortality in six U.S. cities. New England Journal of Medicine, 329, 1753-9). They went into enormous detail on measurements of mortality and pollution levels and obtained some extremely impressive results. However, they never said anywhere in the paper how or why they selected those six cities. So for all the reader knows, they just looked through the atlas and selected only those cities that had high pollution levels and poor life expectancies, or low pollution levels and good life expectancies, and ignored the rest. The results would have been much stronger if they had studied all cities within a certain region (even in less detail) and/or explained clearly why they selected the cities they did.

Was the Follow-up of Sufficient Duration and Complete?

Conditions under study regarding “Prognosis” and “Harm” often take a long while to run their course. For example, sometimes it can take decades between initial exposure to a carcinogen and full-blown cancer. So a study whose follow-up is not long enough can underestimate risk and ignore clinically important effects.

On the other hand, the longer the study, the greater the number of patients who may be lost to follow-up. Patients who are lost to follow-up tend to have a different prognosis from those who stay in a study. Some may be lost because they die, while others may have lost interest in the health care system, possibly to the point that they are no longer taking care of themselves. The study results should indicate how many patients were lost to follow-up, under what circumstances, and whether the rate of attrition could materially affect the results of the study.†

Step Four: Apply the Conclusions to Practice

Ideally, the processes of research, education, professional development and practice should be integrated.

Does it Suggest a Clear and Useful Plan of Action?

The most useful studies are those that suggest a useful plan to improve your patient's state of health. Studies that help clarify a patient's prognosis may also be helpful to the patient in making life decisions. Studies that don't do either of these are of little or no interest to you. A lot of very valuable preliminary research falls into this category. It is not that the research is not good, it's just that it hasn't yet reached the point of being able to provide clear-cut clinical recommendations.†

Cautiously Reference Clinical Practice Guidelines

Consider the discussion regarding the validity of development methodologies relied upon in creating clinical practice guidelines. Life care planners must be cautious when citing a set of clinical practice guidelines as the sole substantiation for specific plan recommendations.

In addition, consider the fact that most clinical practice guidelines do not address the effects of aging with disability or specify factors influencing long-term support and care needs. Even the most well-developed guidelines fall short of offering recommendations relative to the interaction of the aging process and disability management. As stated, life care planners are primarily interested in using prognosis-oriented research literature and practice guidelines to build a foundation for the projected needs of an individual patient.

The link between research literature, clinical practice guidelines, and future needs must be clearly demonstrated within the narrative report and the life care plan. Patients, family members, and other professionals should be able reach the same conclusions represented in a life care plan when given a comprehensive explanation of the methodology and resources used to develop the recommendations.

References

American Medical Association. (1992). Users’ guides to evidence-based medicine. Journal of the America Medical Association, 268 (17), 2420-2425.

New York Academy of Medicine and American College of Physicians. (2002). The evidence-based medicine resource center. Available online: http://www.ebmny.org/.

O’Rourke, A. (1997). Evidence-based practice. The Wisdom Center. Available: http://www.shef.ac.uk/uni/projects/wrp/seminar.html#EBP.

Sackett, D., Rosenberg, W., Gray, J., Haynes, B., & Richardson, S. (1996). Evidence-based medicine: What it is and what it isn’t. British Medical Journal, 312, 71-72.

SUNY Downstate Medical Center. (2000). SUNY Downstate Medical Center Evidence Based Medicine Course. Medical Research Library of Brooklyn. Available: http://servers.medlib.hscbklyn.edu/ebmdos/toc.html.

Wyer, P. (2002). Evidenced-based medicine-The next step: Integrating evidence with values. Or, what’s up with practice guidelines? Available: http://www.jgh.ca/research/ebm/Docs/Montreal_PG2002FridayPW.pdf.

This is an excerpt of a chapter included in the following text and is reproduced here with permission of the publisher Ahab Press, Inc.

Deutsch, P., Allison, L., & Kendall, S. (2004). Research design and statistics: A practical guide to reading research literature and practice guidelines. In P. Deutsch & H. Sawyer (Eds.), A guide to rehabilitation, pp. 9B.1-9B.88. White Plains, NY: Ahab Press, Inc.

Locating Practice Guidelines

The citations within this section are provided as a starting point for life care planners interested in reviewing the clinical practice guidelines of several specialty practice areas. It is not possible to provide a comprehensive list of references, however, because each patient presents a unique set of circumstances and the practice guidelines that you consult as part of your plan development will depend upon the specific needs of the individual with whom you are working.

Beginning the Search

When seeking clinical practice guidelines specific to the patient with whom you are working, you may begin your search in the following ways:

Literature Review

In reviewing the research literature related to a patient’s case, it is likely that authors will have referenced clinical practice guidelines within their articles. This not only saves you time in locating the documents, but provides you with insight when evaluating the validity of the findings of studies which relied heavily upon the guidelines as a basis for their methodology.

The Internet

Many professionals find that the Internet is one of the most efficient ways to locate information if, of course, you are able to hit upon an effective search methodology. In addition to referencing the databanks provided within this chapter, you may search the websites of national organizations, state agencies, credentialling bodies, and similar associations. When utilizing practice guidelines provided on an organization’s website, it is a good idea to actually contact the organization to verify that they have posted the most current document. If not explicitly stated in the guidelines, you should ask for information regarding the development methodology.

The Treatment Team

Ask members of the treatment team or other professional contacts for information regarding the practice guidelines that exist within their specialty area or profession. These individuals will likely save you time in locating the guidelines and may be able to provide a specific citation.

State and National Organizations

Contact state and national organizations directly and request a copy of their clinical practice guidelines. In speaking with representatives, you will have an opportunity to learn more about the group and about the guideline development methodology.

Databases

Agency for Healthcare Research and Quality

Agency for Healthcare Research and Quality (AHRQ) maintains an extensive website and may be helpful to life care planners seeking clinical practice guidelines. The following information was extracted directly from the Agency’s website:

The AHRQ is, “The health services research arm of the U.S. Department of Health and Human Services (HHS), complementing the biomedical research mission of its sister agency, the National Institutes of Health. It is home to research centers that specialize in major areas of health care research:

*Quality improvement and patient safety.*Outcomes and effectiveness of care.*Clinical practice and technology assessment.*Health care organization and delivery systems. *Primary care (including preventive services).

*Health care costs and sources of payment.

*A major source of funding and technical assistance for health services research and research training at leading U.S. universities and other institutions.

*A science partner, working with the public and private sectors to build the knowledge base for what works—and does not work—in health and health care and to translate this knowledge into everyday practice and policymaking.

In examining what works and does not work in health care, AHRQ's mission includes both translating research findings into better patient care and providing policymakers and other health care leaders with information needed to make critical health care decisions.”

The National Guideline Clearinghouse

The National Guideline Clearinghouse (NGC) provides a comprehensive databank of evidence-based clinical practice guidelines and other relevant documents. The following information was extracted directly from the Clearinghouse’s website:

“The National Guideline Clearinghouse (NGC) is a comprehensive database of evidence-based clinical practice guidelines and related documents produced by the Agency for Healthcare Research and Quality (AHRQ) (formerly the Agency for Health Care Policy and Research [AHCPR]), in partnership with the American Medical Association (AMA) and the American Association of Health Plans (AAHP).

The NGC mission is to provide physicians, nurses, and other health professionals, health care providers, health plans, integrated delivery systems, purchasers and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation and use.

The National Guideline Clearinghouse will promote widespread access to clinical practice guidelines through a comprehensive database of clinical practice guidelines. Data on each guideline will include:

(1) a structured abstract containing information about the guideline and its development

(2) a comparison of guidelines covering similar topics, showing areas of similarity and difference; and

(3) the full-text of the guidelines (when available) or links to the full-text (when not) and ordering details for the full guideline.

In addition, the National Guideline Clearinghouse will provide an electronic forum for exchanging information on clinical practice guidelines, their development, implementation and use.”

Association and Agency Sites

Even though the AHRQ and NGC attempt to maintain comprehensive databases, not all organizations are currently included in these sources. The following citations are provided so that you may add them to you research databank:

American Academy of Neurology:

http://www.aan.com/professionals/practice/guidelines.cfm

American Academy of Pediatrics:

http://www.aap.org/policy/paramtoc.html

American College of Cardiology:

http://www.acc.org/clinical/topic/topic.htm#guidelines

National Heart, Lung, and Blood Institute:

(Hypertension) http://www.nhlbi.nih.gov/guidelines/hypertension/index.htm

Note: Although the paths may change as webmasters improve these websites, it is likely that the clinical practice guidelines will remain posted. Most all of these guidelines appear as links from the homepages of the associations. Alternately, perform a keyword search on the site for “practice guidelines” or “guidelines,” or view the site map for a link to the information.

Searching MedlinePlus

Locating clinical practice guidelines on MedlinePlus is simple. From the homepage (http://medlineplus.gov/), enter a search for “practice guidelines.”

You will be linked to a page with all topics and references related to your search. From this page, select areas of interest. The primary limitation with this method of searching is that you may only be directed to pages containing the phase you typed into the search, rather than to the actual practice guideline for which you are seeking.

Searching Medscape

Registration for this site is free of charge (http://www.medscape.com/) and contains a great deal of information useful to life care planners. Similar to Medline, by entering a search for “practice guidelines” from the homepage, you will be linked to all topics and references related to your search.

Note that directly underneath the “Search” box, you may link to Medline. In doing so, you will be led to a screen entitled, “Search Medline.” From here you can tailor your search to your specific needs. For example, when “practice guidelines” is typed into the “Search Query” box (with no other parameters defined), 200 references are returned. The limitation of this site, however, is that not all articles are available for full-text viewing but citations are provided so that you may locate the publication elsewhere.

Searching PubMeb

From the PubMed homepage (http://www.ncbi.nlm.nih.gov/PubMed/) you may search the site for “practice guidelines” to retrieve all of the references related to the topic. For example, when this phrase was entered as a search, 1,075 references were cited. As with Medscape, not all articles are available for full-text viewing but citations are provided so that you may locate the publication elsewhere.

Searching Online Journals

Another option for locating clinical practice guidelines is to go directly to an online journal and perform an internal search of the publication. In some cases, even journals that do not provide full-text articles online will allow users to search the abstracts.

For example, when the American Journal of Medicine (http://www.medicinedirect.com/journal/journal?sdid=5195) is searched for the phrase, “practice guidelines” in all fields, 122 results are returned.

Once you have located the clinical practice guidelines of interest, be certain to review the development methodology and find out as much as you can in order to evaluate the validity and relevance of the guidelines to your patient.

Another example of the importance of networking, continually updating your reference and contact files, and establishing an efficient databank.

References

Agency for Healthcare Research and Quality: http://www.ahcpr.gov/

American Journal of Medicine: http://www.amjmed.org/

MedlinePlus: http://medlineplus.gov/

Medscape: http://www.medscape.com/

National Guideline Clearinghouse: http://www.guideline.gov/

PubMed: http://www.ncbi.nlm.nih.gov/PubMed/

This is an excerpt of a chapter included in the following text and is reproduced here with permission of the publisher Ahab Press, Inc.

Deutsch, P., Allison, L., & Kendall, S. (2004). Research design and statistics: A practical guide to reading research literature and practice guidelines. In P. Deutsch & H. Sawyer (Eds.), A guide to rehabilitation, pp. 9B.1-9B.88. White Plains, NY: Ahab Press, Inc.

Sources of Research Information

There are numerous resources available to life care planners, but professionals need to know where information exists and how it may be accessed.

Peer Reviewed Journals

Peer-reviewed journals accept submissions based upon a “blind” critique of the contributor’s article. In a sense, the peer review process serves as a quality control measure to minimize the distribution of misinformation based upon poorly designed research or theoretical assertions. Peer reviewers are typically experts in a specified field of practice charged with the responsibility of evaluating the scientific merit of a paper or research report.

For this reason, life care planners should rely primarily upon information appearing in peer-reviewed journals. This is not to say that the findings are “correct,” or that the studies included in these publications are as well-designed as they could be. Simply, in order to have been included in the journal, the article was subjected to a review of peers within the field.

There are many valuable journals and, depending upon a professional’s background and issues specific to individual patients, some publications may be of greater use than others. The following journals are suggested resources:

Journals of Rehabilitation and Psychology:

Rehabilitation Counseling BulletinJournal of Applied Rehabilitation CounselingRehabilitation PsychologyJournal of Rehabilitation AdministrationJournal of Vocational RehabilitationVocational Evaluation and Work Adjustment BulletinJournal of Job Placement and DevelopmentWorkJournal of Counseling and DevelopmentJournal of Counseling PsychologyMeasurement and Education in Counseling and DevelopmentJournal of Disability Policy and StudiesJournal of Applied Behavior AnalysisPsychological BulletinTeaching Exceptional ChildrenJournal of Life Care PlanningRehabManagementJournal of Rehabilitation Research and DevelopmentThe Case ManagerThe Rehabilitation ProfessionalPsychosomatics

Psychology, Public Policy, and Law

Journals of Medicine and Allied Health:

Archives of Physical Medicine and RehabilitationJournal of the American Medical AssociationTopics in Spinal Cord Injury RehabilitationBritish Medical JournalAnnals of Long-Term CareHome Health Care ConsultantSpineRehabilitation NursingJournal of Head Trauma RehabilitationBrainNeurologyAmerican Journal of Physical Medicine and RehabilitationPainThe Clinical Journal of PainSpinal CordAmerican Journal of Occupational TherapySCI NursingJournal of PediatricsPhysical TherapyRespiratory ResearchHealth Psychology Journal of Prosthetics and OrthoticsJournal of Spinal Cord MedicineEar & HearingJournal of Occupational MedicineJournal of Physical Therapy Science

Journal of Neurorehabilitation

Locating Journals of Interest

In most cases, life care planners will need to access peer-reviewed journals through the nearest university library. Journals are typically located in the reference section of the library and cannot be borrowed for long-term use, so most volumes will be available for review and photocopying. Most library systems allow members of the community to utilize reference sources, though some may require an identification badge or security check.

Many publishers have begun to transmit issues electronically or provide website access for those who subscribe to the journal. Subscriptions vary widely in cost, beginning at approximately $25 per year and escalating into the hundreds of dollars per year. In some cases, a journal subscription is included as a benefit of association membership. For example, a subscription to the Journal of Life Care Planning is included in the annual membership fee of the International Association of Life Care Planners.

Many journals provide the table of contents and/or the abstracts for articles appearing in recent issues. There are also journals providing full text of articles free of charge, or at a nominal fee, online. Networking with other planners and practitioners, attending seminars and continuing education workshops, and joining professional listserve discussion groups may provide additional sources of useful information.


Resource Links

Reliability and Validity for Life Care Planners - Why are we, as clinical practitioners, interested in research aimed at validating the process of life care planning?

Reading and Interpreting Life Care Planning Literature - The professional should be prepared to critically evaluate a study reported in the literature and apply that new knowledge to their professional practice and future investigative endeavors.

Ethics in Research - As practitioners and researchers, we have a responsibility to protect the research subject from potential harms . . .

Introduction to Evidence-based Practice - The practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research.

Locating Practice Guidelines - When seeking clinical practice guidelines specific to the patient with whom you are working, you may begin your search in the following ways:

Sources of Research Information - There are numerous resources available to life care planners, but professionas need to know where information exists . . .

 

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