Kinesiophobia and Cogniphobia:

Assessment of Avoidance Conditioned Pain Related Disability (ACPRD)

MF Martelli, ND Zasler, RL Grayson and EL Liljedahl

Concussion Care Centre of Virginia,

10120 West Broad Street, Suites G & H

Glen Allen, Virginia 23060

Kinesiophobia is a concept that was derived in response to observations by health care treatment specialists of significant avoidance responses in the treatment of chronic back pain (Todd, 1998). Kinesiophobia is defined as the unreasonable or irrational fear of pain and painful reinjury upon physical movement. Given that lack of patient participation and cooperation are the major factors contributing to poor progress (or relapse) in chronic pain treatment, it follows that phobic responses to pain (or pain phobias), as unhealthy pain maintaining habits, are a major contributor to pain related disability. The K-scale (Todd et al., 1998; see appendix) is a useful instrument for quickly screening for unreasonable fear of movement or reinjury.

Scoring of the K-scale is straightforward. With the exception of four items (4,9,15,17) which are inverted due to being scored in the opposite direction, individual items responses are simply summed for the degree of agreement ranging from 1 to 4. A cutoff score of 37 has been found useful for discriminating clinically significant levels of avoidance conditioned pain related disability (ACPRD). In the case of high scores, and subsequent to ruling out of malingering factors, the most appropriate rehabilitative intervention is the provision of combination therapy. Emphasis on reeducation, countering maladaptive phobic responses and promoting adaptive attitudes and treatment participation/ cooperation are the typically necessary objectives of an effective treatment for reducing ACPRD.

Similarly, Todd, Martelli and Grayson (1998) extended the concept of kinesiophobia to post traumatic headaches. They observed that several cases of poor effort on neuropsychological assessment early after head trauma or whiplash, initially presumed to reflect frank malingering behavior, were actually reflective of phobic responses to anticipated initiation or increase of headache, which is a very frequent consequence of trauma to the head, neck or brain. In a couple of cases, brief graduated exposure and reeducation strategies were effective in countering these avoidant responses within one testing session. However, some of these responses have been observed to persist for one or more years and require formal anxiety reduction procedures to modify.

The concept of cogniphobia was subsequently proposed as an unreasonable or irrational fear of headache pain or painful reinjury upon cognitive exertion. The C-Scale (Todd, Martelli & Grayson, 1998; see appendix), adapted from the kinesiophobia instrument, is designed to assess anxiety based avoidant behavior with specific regard to cognitive exertion. That C-scale is the approximate equivalent to the K-scale applied specifically to assessment of ACPRD in cases of head and neck pain.

Investigations of psychometric properties and utility are underway and preliminary results appear promising. A cutoff score of 37 for the C-scale, like the K-scale appears to allow useful discrimination of ACPRD. Finally, like kinesiophobia, cogniphobia is treatable and can be eliminated through combination therapies that include reeducation, anxiety reduction procedures such as graduated exposure, cognitive reinterpretation and systematic desensitization, and promotion of adaptive attitudes and treatment participation /cooperation.

HE INTERNET USERS' GUIDE TO DISABILITY RELATED RESOURCES ON THE WORLD WIDE WEB: RESULTS OF A COMPREHENSIVE SEARCH

Erika L. Liljedahl, Psy.D.^a,b

Michael F. Martelli, Ph.D ^a,b,c,d

Keith Nicholson, Ph.D.^e

Nathan D. Zasler, M.D., FAAPMR, FAADEP, CIME.^a,b

^aConcussion Care Centre of Virginia, Pinnacle Rehabilitation and Tree of Life

10120 West Broad Street, Suites G & H,

Glen Allen, VA 23060, USA

^cVirginia Commonwealth University and

^dMedical College of Virginia, Richmond, VA, USA

^eUniversity of Toronto, Canada

The following websites are only a representative sample of a much larger and more comprehensive listing of sites and categories regarding internet disability resources. These resources will be provided at the Villa Martelli website as of January 1, 2000: http://www.go.to/MFMartelliPhD

Villa Martelli is a comprehensive listing of some of the most useful links for professionals and patients who assess, treat, or cope with physical or neurologic injury or impairment, including brain injury and neurobehavioral disorders, stroke, Parkinsons, dementia and other neurologic diseases, Multiple Sclerosis and other neuromuscular diseases, chronic pain, musculoskeletal disorders, etc. Resources include numerous organizations, medical, psychological assessment and practical treatment strategies, assessment and treatment reviews, including some of the newest treatment methodologies, support groups, list serve groups, assistive technology, computer applications, downloadable information and books, government resources, etc. Links provided in this article are included at this site.

ALCOHOL / SUBSTANCE DISORDERS

Department of Psychology/Addiction Research Unit/University at Buffalo

http://wings.buffalo.edu/aru/ARUbiological.htm

Webpage provides information on the neurological/biological basis of addiction and effects of drugs on the central nervous system.

National Families in Action: Drugs and the Brain

http://www.emory.edu/NFIA/brain/effects/index.html

Site provides information on the effects of the following drugs on neurological functioning: alcohol, cocaine, ecstasy, heroin, ice, inhalants, LSD, marijuana, PCP, steroids, tobacco, etc.

Medical Sciences Bulletin: Focus On Liver-Brain Relations in Alcoholics

http://www.pharminfo.com/pubs/msb/alc_liv.html

Site offers information on Portal Systemic Encephalopathy (PSE), cognitive deficits, Liver-Brain Interactions, future research directions, etc.

ALZHEIMER'S DISEASE and DEMENTIA

Alzheimer's Association

http://www.alz.org/progress/index.htm

Educational information and articles, links, resources on caretaking, medical issues, research, news, etc.

Alzheimer's Disease

http://www.alzheimers.com/

Provides information on the history of AD, treatments, prevention, and dementia-related disorders.

Dementia Web

http://dementia.ion.ucl.ac.uk/

A source of information, advice, education, research findings and support for patients, caregivers, doctors and other professionals.

BALANCE / VESTIBULAR

ImmuneSupport Research Abstacts: Balance / Vestibular

http://www.immunesupport.com/research/abstracts/sci057.htm

Offers research abstracts relating to balance/ vestibular disorders.

Balance Disorders Institute

http://home.fuse.net/bdi1/index2.htm

Provides information about mechanisms of balance, disorders of balance and dizziness, evaluation, diagnosis and treatment, and the specific approach for this clinic.

James Madison University Research and Training Center for Hearing and Balance

http://www.bme.jhu.edu/labs/chb/

Information on hearing and balance disorders, along with quizzes, case studies and information on laboratories, research, treatment, and training opportunities, etc.

BIOFEEDBACK

Association for Applied Psychophysiology and Biofeedback

http://www.aapb.org

Organization homepage dedicated to advancing the development, dissemination and utilization of knowledge about applied psychophysiology and biofeedback. Includes information and resources for practitioners as well as the public.

Journal of Neurotherapy

http://www.snr-jnt.org/index.htm

Home of the peer reviewed EEG Biofeedback therapy journal that includes on line reprints of all back issues except the current year.

Society for Neuronal Regulation (SNR)

http://www.snr-jnt.org/

Information and resources that include reprints of The Journal of Neurotherapy, abstracts and papers from SNR and other meetings and papers from others journals, news, announcements, etc.

Neuroscience and Psychophysiology

http://www.wesleyan.edu/spn/neuro.htm

Links to neuroscience and psychophysiology web sites and laboratories, teaching resources and online tutorials, professional organizations, more.

Neuro Stimulator Listserv

http://www.challengenet.com/~neuro_stim/index.htm

Neuro Stimulator Listserv, a new web site for people with Neuro Stimulator implants or Baclofen Pumps to hold discussions with each other. This listserv has members from many different countries and is adding many relevant links and articles.

BRAIN INJURY

Centre for Neuroskills: Traumatic Brain Injury Resource Guide

http://www.neuroskills.com/

Traumatic Brain Injury (TBI) Resource Guide provides the following useful information for individuals interested in traumatic brain injury: articles, brain mapping, cognition survey, conferences, current news, glossary, free articles, mild head injury, neurolinks, newsletter, rehabilitation, pharmacology guide, support groups, TBI assessment, services on rehabilitation, assisted living, locations, employment, Frequently Asked Question's, profiles, consultants and products relating to "How-To" books, assistive equipment, bookstore, free newsletter, electronic bookstore regardingTBI, etc. Highly recommended. Website maintained by Craig Persel.

HeadsUp

https://www.angelfire.com/va/HeadsUp/

Newsletter of the Richmond (VA) Supportive Survivors with online publication of their newsletter. Contains relevant TBI information, including patient point of view articles, humor, an. Ask the Doctor column, articles by nationally renowned TBI professionals, featured web site and listings of local events

Brain Injury Association

http://www.biausa.org/

The Brain Injury Association provides news, search engine, index, links, E-mail, jobs, chat-lines,

conferences, contributions/ financial, treatment and rehabilitation, Veterans, and more information.

Brain Injury: Kennedy Krieger Homepage

http://www.kennedykrieger.org/training/brain.htm

Training Center in Brain Injury Research.

Coma and Anoxic Brain Injury: Links for Information

http://www.paxconsulting.com/coma.html

Links for coma and anoxic brain injury, general medicine, alternative medicine plus related associations and hotlines.

CHRONIC PAIN

Pediatric Pain Web Site

http://is.dal.ca/~pedpain/pedpain.html

Offers resources for professionals treating children in pain, and patients and their family. Includes both professional resources and information re rating instruments appropriate for children, research, patient information, etc.

Migraine and Other Headaches

http://www.toddtroost.com/migraine/mig0.html#TOP0

The main site for headache information developed by B. Todd Troost, M.D. with links to most of the published articles, chapters, and lectures he has completed. A fairly good site.

The International Myotherapy Association

http://www.myotherapy.org/

Myotherapy involves applying pressure is applied to "trigger points" in muscles created by damaged through birth, sports, accidents, occupations, disease, etc. This site includes links to related sites, a list of IMA myotherapists, a newsletter, calendar, and an interactive pain profile area.

Pain.com

http://www.pain.com/

Provides a very comprehensive list and links to pain sites and organizations on the web, including professional and consumer information, CME's, an on-line journal, pain news, featured daily articles and questions, interviews, pain libraries and pain clinic database information.

American Academy of Pain Management

http://www.aapainmanage.org/

Organization homepage includes: Highlights; National Pain Data Bank; Directory of Pain Management Programs, and Directory of AAPM Members; Annual Conference schedule, information, tapes, CME's; Classified Advertising; Search, resources for current medical information; The Pain Practitioner newsletter, on line.

COGNITIVE REHABILITATION

Mind Tools Bookstores

http://www.mindtools.com/#Techniques

Cognitive enhancement techniques are given: Problem Solving Techniques and Analytical methods, Information Skills, Improving Memory, Increasing Creativity, Skills for High Performance Living, Mastering Stress, Time Management Skills, Achieving ambitions with Goal Setting, Planning and Communication Skills, Practical Psychology, Sports Psychology, Psychometric Tests, and Links to other mind tools.

Cogskills.com

http://www.cogskills.com/documents/suggestions.html

Homepage created by Mary Stapleton and Rick Parente, containing tips on interpersonal skills, job interviews, memory enhancement and time management strategies.

DISABILITY-GENERAL

The Disability Forum

http://forums.sympatico.ca/WebX/WebX.cgi?14@162.KwhqaaQxaIL^0@.ee6f50e

The DisABILITY forum hosts numerous moderated discussion groups for a wide array of diagnostic categories and by issues which affect a wide variety of people with disabilities.

National Organization on Disability

http://www.nod.org

Disability organization homepage that includes information and resources relating to noteworthy NOD programs, frequently asked questions (FAQ's), publications, news releases, employment resources, publications, information about ADA, organization projects, etc.

Disability Information for Students and Professionals

http://www.abilityinfo.com/

Resource for students from around the world studying to support and work for individuals with disabilities, as well as professionals within the field. Includes such informational resources and links sections as an International Disability News Ticker, Worldwide disability news headlines, students seeking employment, post or view disability job listings, Information Marketplace and a discussion board and forums and chat and listserv options.

Disability related web sites

http://sargon.mmu.ac.uk/rindex.html

Over 2,000 links to a wide variety of health and disability related sites.

Health and Disability-Related Web Sites

http://sargon.mmu.ac.uk/resorce1.htm

Twenty six pages of a very comprehensive set of links organized by diagnostic categorical areas.

FORENSIC NEUROPSYCHOLOGY

ExpertWitness.com

http://www.expertlaw.com/experts/Law/

Expert witnesses and law enforcement information and resources.

American Academy of Forensic Psychology

http://www.abfp.com

Homepages for the American Academy of Forensic Psychology and American Board of Forensic Psychology. Provides information on the practice of forensic psychology, qualifications of Forensic Psychologists, diplomat, workshops, etc..

Forensic Psychology/ Psychiatry

http://flash.lakeheadu.ca/~pals/forensics/

Forensic Psychology/ Psychiatry provides: Forensic Psych Newspaper, Education information, Forensic Papers, Online forensic articles, Forensic Event Listings, conferences, and Forensic Psych Links.

Forensic Psychiatry and Medicine

http://www.forensic-psych.com/articles/

Forensic Psychiatry and Medicine webpage contains links and an article on Forensic Psychiatry and Medicine: How Is An Objective Medical/Psychiatric Opinion Formed? Who Can Benefit?

Some examples of expertise, employment litigation, criminal justice and public safety, and frequently asked questions.

Zeno's Forensic Page

http://zeno.simplenet.com/forensic.html

Includes a very wide array of useful general and specific informational resources and links in multiple topic areas in the fields of forensic science, forensic medicine and forensic psychology / psychiatry, including a free newsletter.

MEDICINE

Medscape

http://www.medscape.com/Home/Topics/multispecialty/multispecialty.html

Free site with the most extensive compilation of next day conference news summaries, treatment and clinical research updates and original e-med texts in 18 specialty areas with the largest material collection and the biggest drug/ disease database (with interaction and indication information) and free medline access, e-mail, and more.

American Medical Association (AMA)

http://www.ama-assn.org/

Site for both physicians/members and members of the public with general information on many aspects of health/medicine including specific an atlas of the human body, a medical glossary, common laboratory or radiology tests, an interactive health module in which the user enters their own health information, etc.

National Institutes of Health

http://www.nih.gov/

Home page of the National Institutes of Health (NIH) whose mission is to uncover new knowledge that will lead to better health for everyone. Organizational or other information on the NIH as well as links to other medical resources and sites. Perhaps intended more for the professional with particular interests.

Medline

http://www.helix.com/

Free access to Medline; limited search options.

Merck Publications

http://www.merck.com/pubs/

Webpage offers various Merck publications online.

NEUROPSYCHOLOGY

National Academy of Neuropsychology

http://nan.drexel.edu

Home page of the National Academy of Neuropsychology, a professional society that includes clinicians, scientist-practitioners, and researchers interested in neuropsychology. Site primarily contains organizational information with links to many other associated sites.

The American Board of Neuropsychology

http://www.med.umich.edu/abcn/

Site provides information on earning a neuropsychology diploma, current news in neuropsychology, and additional links to sites involved in the neurosciences.

Neuroanatomy and Neuropathology on the Internet

http://www.neuropat.dote.hu

Neuroanatomy and neuropathology on the Internet.

The American Academy of Neuropsychology

http://www.med.umich.edu/abcn/aacn.html

The American Academy of Neuropsychology webpage contains listing of current members and news, articles, bylaws, opportunities for continuing education, and more neuropsychology links.

Neuropsychology Central

http://www.premier.net/~cogito/neuropsy.html

Neuropsychology Central is devoted exclusively to human neuropsychology. Contains multiple neuroscience links.

Clinical Neuropsychologist

http://www.swets.nl/sps/journals/tcn.html

Information on this widely read neuropsychology journal including abstracts of published articles.

Journal of Clinical and Experimental Neuropsychology

http://www.swets.nl/sps/journals/jcen.html

Information on this widely read neuropsychology journal including abstracts of published articles.

Aging, Neuropsychology, and Cognition

http://www.swets.nl/sps/journals/anc.html

Information on the journal including abstracts of published articles.

American Psychological Association: Division 40

http://www.swets.nl/sps/ntp/ntphome.html

Information on training programs in Clinical Neuropsychology.

NEUROLOGY AND NEUROSCIENCE

Neuroscience and Psychophysiology Network

http://www.wesleyan.edu/spn/neuro.htm

Sections on careers, psychologist home pages, special topics, forums, clinical degree programs, and links to neuroscience and psychophysiology web sites and laboratories, teaching resources and online tutorials, professional organizations, etc.

Neuroanatomy and Neuropathology on the Internet

http://www.neuropat.dote.hu/

A Guide for Medical Students, Residents, and other Health Professionals. Includes an online neuropathology atlas, experimental stroke laboratory and links, and sections on anatomy, histology, pathology, documents, journals and books on line, free shareware, quizzes, and links.

Neurosciences

http://www.lm.com/~nab/

A searchable and browsable index of neuroscience resources available on the Internet: Neurobiology, neurology, neurosurgery, psychiatry, psychology, cognitive science sites and information on human neurological diseases.

Neuropsychology/Neurobiology

http://www.york.ac.uk/inst/ctipsych/neur.html

Excellent neuroscience resource with many links to related sites.

The Whole Brain Atlas

http://www.med.harvard.edu:80/AANLIB/home.html

Collection of MR images of the brain. A well designed and easy to use web site that includes 'Tours' of pathological conditions as well as MPEG movies. Also offers a self-quiz on anatomical structures. The on-line atlas has sections on normal brain, cerebrovascular disease, neoplastic disease, degenerative disease, and inflammatory/infectious disease.

SPINAL CORD INJURY

National Spinal Cord Injury Association

http://www.spinalcord.org/

Mission is to work to empower individuals and families with spinal cord injury issues to make informed choices and take actions to achieve their highest level of independence and personal fulfillment. This site includes many resources relating to SCI information, local SCI support and contact chapters and professional support groups

Paraplegia News

http://www.pva.org/pn/index.htm

A news/information magazine for people with mobility impairments covering SCI research, legislation on disabilities, health care, travel tips, housing, employment, computer options.

American Paralysis Foundation / Christopher Reeve Paralysis Foundation

http://www.apacure.com/

Resources, information and links relating to SCI news, research, progress, publications, events, discussion, site search, etc. Primary dedication is toward finding a "cure".

American Paralysis Foundation / Christopher Reeve Paralysis Foundation

http://www.apacure.com/

Resources, information and links relating to SCI news, research, progress, publications, events, discussion, site search, etc. Primary dedication is toward finding a "cure".

National Paralysis Foundation

http://www.kwnpf.org/

This sites primary dedication is with working toward finding a cure. It provides information and links relating to the latest research, helpful resources, special events, profiles in courage, etc.

PARKINSON'S / MOVEMENT DISORDERS

The National Parkinson Foundation

http://parkinson.org

The National Parkinson Foundation (NPF) offers the following information at their site: Publications, Find Support Groups On-line, Answer the Patient and Caregiver Survey, Stretching the Bounds in Parkinson's Disease, Events, News, Clinical Studies, a Library, Conferences, Sponsored Programs, Information on Grants, Related Links, How to Help NPF, Affiliate Chapters, Parkinson Facts, PD Patient Services, and Membership information. The mission is to provide up-to-date education on the status of research on the etiology Parkinson's disease, preventative signs and to provide information on what therapy may be most beneficial.

PARKINSN

http://james.parkinsons.org.uk.search.htm

PARKINSN is a worldwide Parkinson's Disease (PD) Interest Group. Some information provided includes Charity/ Non-profit issues, medical information, technology for disabilities The Parkinson's Community on the Internet, other Interesting sites (non-PD), Introductory Information about PD, A Parkinson's Primer by Dennis Greene, Animated descriptions of the action of many PD drugs, overview of Parkinson's from International Health News, Personality changes and depression in PD, and other interesting introductory and updated information about PD.

Parkinson's Disease Interest Group

http://www.santel.lu/SANTEL/diseases/parkins.html

This website offers: a Parkinson's Disease Interest Group and a discussion of legal issues. Several links to additional information on Parkinson's Disease, including neurosurgery, Parkinson's society, exercises, a glossary of terms, and adjustment issues. Additional links to physicians and neuroscientists regarding PD are reported, and a site dedicated to Parkinson's patients communicating to one another.

The Parkinson Archive Treasures

http://www.ionet.net/~jcott/homepage/archive/patp.html

The Parkinson Archive Treasures webpage contains treatment philosophy, medication database for pharmacological treatment, pros and cons of specific drugs, current topics, handbook for caregivers, and strategies for coping with side effects of medications.

Parkinsons Disease Index

http://www.pdindex.com/test

Offers effort to more easily find information on the internet about PD. Provides a table of contents and an index to internet PD information.

PSYCHOLOGY

American Psychological Association

http://www.apa.org/monitor/

Contains articles from the APA published news journal, the Monitor, on line.

Applied Psychometric Society

http://www.fordham.edu/aps/index.html

Describes interests and services provided by the APS, a brief history of psychometrics, psychometric links and resources. Addition societies are listed.

American Psychiatric Association

http://www.appi.org/pnews/pnhome.html

American Psychiatric Association webpage has issues from 1996 to present, featuring treatment information.

PsychJournalSearch

http://www.cmhc.com/journals/

PsychJournalSearch has searchable database of over 1,000 journals in psychology, psychiatry, and other mental health publications.

Links to Psychological Journals

http://www.wiso.uni-augsburg.de/sozio/hartmann/psycho/journals.html

Includes an index of 1,600+ online psychology and social science journals with links to home pages and journal information, tables of contents and abstracts, online articles, and much more.

RESEARCH AND VARIOUS RESOURCES

U.S. Opportunity Alert

http://www.sciencewise.com

U.S. Government sponsored free service web site that alerts scientists to funding opportunities for research projects. Signing up for specific areas of research produces weekly e-mailings of a list of grants, etc. that fit the desired profile. For a limited time funding sources other than government (private foundations, etc.) that usually cost fees, are provided free. a fee to access.

Statistics.com

http://www.statistics.com/

Information about statistics software (major packages like SAS, SPSS and S-PLUS, shareware and smaller packages too), government statistics, statistics, mathematics and experimental design links, as well information as about statistics analysis, data analysis and tutorials and short courses in most important areas of statistics.

Itools

http://itools.com

Research and find information on any subject

Dogpile.com

http://www.dogpile.com

Multiple search engines compiled into one area to simplify Internet searches.

Future.net

http://www.future.net/~bradj/father.html

Various links to information on Mental Health issues, Medications and Psychopharmacology, Patient Information, including specifically adult assessment, and numerous Medical Sites. Attached please find another procedure for e-mailing congressman

E-mailing Congress

http://congress.nw.dc.us/wpost/elecmail.html

Procedure for e-mailing congressman, sponsored by the Washington Post. You have two search options in choosing to whom you will write. Most Congresspersons usually respond only to messages from their own constituents. Include an address so that staff will read and tally your mail and respond via e-mail automated notice of receipt only. If you do include an out of state mail address, they may not tally your opinion.

Onelist

http://www.onelist.com/subscribe/information_station

Online list community dedicated to the following topics: Software, legal, medical, news, search engines, education, interesting e-mail lists, etc.

PBS Website

http://www.pbs.org/uti/

PBS Web site dedicated to understanding and using, and getting the most out of, the Internet, via instructional information and tutorials.

SPINAL CORD INJURY

National Spinal Cord Injury Association

http://www.spinalcord.org/

Mission is to work to empower individuals and families with spinal cord injury issues to make informed choices and take actions to achieve their highest level of independence and personal fulfillment. This site includes many resources relating to SCI information and contact chapters.

Paralinks

Http://www.paralinks.net/

Resources and links relating to SCI, paraplegia and quadriplegic, paralysis information, archived articles directory, Entrepreneurs on Wheels, movies and wheelchairs, wheelchair culture, World Wired Wheels, Poetry from Wheel Life, art gallery, letters and questions, paralink pain files, and sexuality and SCI Art Gallery

American Paralysis Foundation / Christopher Reeve Paralysis Foundation

http://www.apacure.com/

Resources, information and links relating to SCI news, research, progress, publications, events, discussion, site search, etc.

National Paralysis Foundation

http://www.kwnpf.org/

This sites primary dedication is with working toward finding a cure. It provides information and links relating to the latest research, helpful resources, special events, profiles in courage, etc.

Paraplegia News

http://www.pva.org/pn/index.htm

A news/information magazine for people with mobility impairments covering SCI research, legislation on disabilities, health care, travel tips, housing, employment, computer options.

TOURETTES SYNDROME

Guide to the Diagnosis and Treatment of Tourette Syndrome

http://www.mentalhealth.com/book/p40-gtor.html#Head_2

Good page with lots of information and resource links.

Tourette Syndrome Association

http://tsa.mgh.harvard.edu/

Provides comprehensive and medically reviewed published material on this disorder along with information and resource links.

Tourette Spectrum Disorder Association

http://www.tourettesyndrome.org/

Includes information about the organization and mission, as well as information and resources and links regarding diagnosis, treatment, news updates, articles, reading lists, medications, etc.

Tourette Syndrome Foundation of Canada

http://www.tourette.ca/

Site for the national voluntary organization dedicated to helping individuals with Tourette Syndrome and their families via information and resources and promoting local self-help and professional services and promoting research.

Links to Information About Tourette's Syndrome

http://millennium.fortunecity.com/fairview/805/tslinks.html

Interesting homepage with useful links and personal information about diverse topics, including home schooling persons with special needs.

Grand Rounds Presentation: National Academy of Neuropsychology, Las Vegas, 1997

Response Bias Detection in Neuropsychological Assessment:

An integrative case study

Michael F. Martelli^1,2,3 and Nathan D. Zasler,^1,2

¹Pinnacle Rehabilitation

²Concussion Care Center of Virginia, and Tree of Life, LLC.

³Virginia Commonwealth University

Abstract

The utility of neuropsychological assessment is dependent on the cooperation and motivation of the client for validity of performance information. Clearly, in cases of mild to moderate brain injury, neuropsychological testing often provides the primary evidence of post-concussive sequelae. However, litigation introduces a situation where financial incentive to perform poorly frequently exits. In the present paper, data are presented on a 33 year old male litigant who sustained a mild traumatic brain injury with associated back injury and chronic pain subsequent to being struck in the head with a blunt object while standing in line at a hardware store. Repeated test data across five total administrations, including emotional status data, are available and selectively presented. Notably, the fifth and final assessment was an independent neuropsychological evaluation that placed primary emphasis on: 1) interview data; 2) accommodation of chronic pain complaint to minimize effect on neuropsychological test performance; 3) an adapted, multi-modality approach to qualitative and quantitative assessment of response bias, both during the independent neuropsychological evaluation and via comparison of data across assessments. Results are presented in both a narrative form with tables, and in a summary table of validity indicators which represents a refinement and extension of the work of Trueblood and Schmidt, 1993 (JCEN: 15,4, 578-90). An explanation of response bias motivation that incorporates interview and emotional status data for this client is presented. Finally, the utility of the proposed neuropsychological validity indicator checklist is discussed.

Response Bias Detection in Neuropsychological

Assessment: An integrative case study

Michael F. Martelli^1,2,3 and Nathan D. Zasler,^1,2

¹Pinnacle Rehabilitation

²Concussion Care Center of Virginia, and Tree of Life, LLC.

³Virginia Commonwealth University

Abstract

The utility of neuropsychological assessment is dependent on the cooperation and motivation of the client for validity of performance information. Clearly, in cases of mild to moderate brain injury, neuropsychological testing often provides the primary evidence of post-concussive sequelae. However, litigation introduces a situation where financial incentive to perform poorly frequently exits. In the present paper, data are presented on a 33 year old male litigant who sustained a mild traumatic brain injury with associated back injury and chronic pain subsequent to being struck in the head with a blunt object while standing in line at a hardware store. Repeated test data acrossnd five total administrations, including emotional status data, are available and selectively presented. Notably, the fifth and final assessment was an independent neuropsychological evaluation that placed primary emphasis on: 1) interview data; 2) accommodation of chronic pain complaint to minimize effect on neuropsychological test performance; 3) an adapted, multi-modality approach to qualitative and quantitative assessment of response bias, both during the independent neuropsychological evaluation and via comparison of data across assessments. Results are presented in both a narrative form with tables, and in a summary table of validity indicators which represents a refinement and extension of the work of Trueblood and Schmidt, 1993 (JCEN: 15,4, 578-90). An explanation of response bias motivation that incorporates interview and emotional status data for this client is presented. Finally, the utility of the proposed neuropsychological validity indicator checklist is discussed.

Response bias represents a serious threat in neuropsychological assessment.. Because neuropsychological assessment usually begins with interview about self-reported symptoms and subsequently relies heavily on standardized measures of performance on well-normed tests, its validity requires the veracity, cooperation and motivation of the patient for obtaining valid performance measurement. Recent evidence, however, clearly demonstrates that patients' self-reported and family-reported symptoms associated with neuropsychological deficits can be unreliable. This is especially true with post-concussive deficits since these symptoms often appear with similar frequency in the general population (Lees-Haley and Brown, 1993). Additionally, the demonstrated ability of neuropsychologists to accurately detect malingering in test protocols has been less than impressive (e.g., Loring, 1995). Further, the common practice of utilizing technicians to administer tests has been called into question. For example, the 1996 Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology includes concerns about the ability of technicians to utilize behavioral observation information and appreciate qualitative aspects of test performance to maximize testing utility, implicitly including detection and management of test response bias issues. Nonetheless, various instruments, techniques and strategies are available which have demonstrated at least some utility in detecting response bias, especially malingering, as a means of increasing confidence in motivation during neuropsychological tests, and hence the validity of performance findings.

Table 1 includes an illustrative summary of some specific response bias detection strategies. Importantly, these strategies are presented as illustrations of indicators of important information for interpreting neuropsychological test data. Nonetheless, integration of behavioral observation, interview, collaborative, historical and personality and contextual data with neuropsychological performance data and measures of effort or performance (or response bias) undoubtedly provides the best method for estimating the degree to which test results are reliable and valid and reflect actual abilities.

Notaably, these strategies are not intended to support a simple dualistic model that assumes examinees either try hard or malinger, or that evidence of less than full effort on any one test indicates absence of impairment in other areas of testing or in real world abilities. They are also not offered with specific guidelines or cutoff points. Rather, they are offered with the suggestion that::

a) test performance is influenced by multiple factors that include desire to perform with full effort; b) the degree of effort exerted on testing exists on a continuum (versus a dichotomy) and can be estimated by the /extent to which indicators of poor effort are absent; c) reliability and validity of neuropsychological test findings is dependent on relative assurances of full test effort; and d) interpretation and diagnostic impressions are dependent upon reliable and valid test results.

Finally, this table is offered with great reluctance. Given the diparatity between the adversarial legal process and responsibility of attorneys to be patient advocates versus the dispassionate, objective scientific ethics expected and required of psychologists and physicians, the danger exists that attorney "coaching" based on utilization of this material might occur. This, of course, would then represent a form of "stealth" threat to the validity of neuropsychological test data. Lest anyone underestimate this threat, or not recognize it as an expected consequence of collision between the disparate legal and scientific ethics, it should be noted that evidence of attorney client coaching regarding psychological evaluation has been reported in the literature.

Recommendations for Enhancing Validity in

Neuropsychological Assessment

• Utilize neuropsychological instruments with built-in symptom validity measures. Some current measures for which simulator performance data are provided include the Memory Assessment Scales (Williams, 1992) and the Rey Complex Figure Test and Recognition Trial (Meyers & Meyers, 1995). Utilizing such instruments seems especially relevant, given: questionable ethics of administering and charging for very long tests designed solely for detection of potential motivation problems, with results not that do not necessarily generalize to actual neuropsychological tests in the same battery; protracted testing time for administering tests that potentially detract from time for administering relevant neuropsychological measures and conducting more comprehensive interview with client and collaborative others.
• Develop instruments with built-in symptom validity measures.
• Develop built-in symptom validity measures for existing instruments.
• Utilize comparisons with published patterns and indices indicating sub-optimal test performance(e.g., serial position effects (Bernard, 1991); the Wechsler Memory Scale - Revised General Memory vs Attention/ Concentration index (Mittenberg, 1993); see Trueblood & Schmidt (1993) for a review).
• Employ shorter symptom validity tests in order to minimize possibility of negative reactions owing to the nature of protracted (i .e., ad nauseum) participation in easy, boring tasks.
• Employ more credible and less well known symptom validity measures. Note: Hiscock - looks easy and obvious and patients often comment (e.g., "Boy, this is easy...just remember the first number from the list".); Rey 15 Item test is also somewhat apparent, and is even discussed in law journals.
• Vary neurospsychological measures that are employed, in order to prevent discrimination of neuropsychological measures from symptom validity measures. Notably, publicization of these tests has led to increased recognition by potential defendant attorneys, clients, local brain injury support groups, internet groups, and son on.
• Measure completion time for symptom checklists and psychological and other measures, and compare with response times on neuropsychological measures for consistency.
• Apply multiple strategies for assessing motivation, especially when cutoff score approaches are employed, and include qualitative and qualitative measures.
• Rely, primarily, on Neuropsychologists for both interviewing and administration of neuropsychological instruments, with only limited employment and greatly decreased reliance upon technicians. Notably, experienced neuropsychologists who both interview and administer test instruments are infinitely more capable of: Integrating interview and personality and emotional assessment data and inferences, with more sophisticated clinical observations during testing; Adapting more creative modifications of testing procedures given suspicion of low motivation (e.g., chunking, recognition adaptations for recall of information), as well as modifications to the testing process (e.g., provision of corrective feedback; instruction) to increase motivation and optimize effort; Benefiting from the apparent probability that patients will be less likely to believe that they can fake out the 'doctor' if the doctor interacts with them and administers tests; Or avoiding possible symptom exaggeration fear that their problems will be missed by a non-doctoral testing technician.
• Increase administration of tests by clinicians who actually see, for treatment, some of the patients they assess. This helps assure more adequate clinical skills for detecting sub-optimal performance, as well as collection of internalized tracking data to allow validation of previous inferences across time, and continuous self-correction and increased internalized norms regarding ecological and predictive validity of neuropsycholgical measures)
• Ensure that important general variables affecting motivation are adequately assessed during an interview that is concuted prior to assessment. Specifically, assess the impact of anger or blame and feelings of resentment or victimization (e.g., Rutherford, 1989), as well as the other variables shown in the literature to be associated with poor recovery and adaptation to impairments (e.g., Martelli, et al, in press).
• Always assess, in addition to emotional and motivational issues, interest/ disinterest in the testing process, and any obstacles or impediments to optimal effort and performance.
• Prepare patients before beginning testing. Employ understanding, as well as education, in order that clients will be prepared to perform to the best of their ability. Emphasize how tests don't measure everything, but that they do assess poor motivation or effort. Emphasize interview data and corroborative data and functional abilities. Demystify "brain damage".
• Establish rapport and attempt to establish a working relationship with clients. Even in cases of independent examinations where the referral source and expectation is adversarially motivated, valid data collection requires a collaborative effort. Importantly, some social psychology literature suggests that dissimulation might be less likely given better rapport.
• Beware of adversarial, attorney and legal/justice system biases and influences. Be on guard by addressing potential sources of bias directly, and providing feedback and education, and clarification of science vs. adversarial ethics.
• Do not freely share relevant trade secrets (e.g., information about symptom validity tests, or known patterns of performance on neuropsychological instruments) so freely with attorneys. Attorneys adhere to a completely different set of professional ethics. Their ethics are based on adversarial effort on behalf of the primary welfare of their client, and not objective, scientific truth. Their ethics can compel them, through consumer education and advocacy, to share information which will be of potential benefit to their clients undergoing neuropsychological evaluation; of course, this includes information that will help their clients recognize symptom validity measures versus legitimate neuropsychologic instruments, and even known performance patterns. Notably, several recent professional law publications recommend preparing their clients for testing by counseling them with this information.
• Beware of adopting adversarial ethics via osmosis or 'creeping adversarialism'. Attorneys promote either/or, black/white conceptualizations, and prefer to hire and pay (at high reimbursement levels, and as probably the last lucrative, unregulated payor source) professionals inclined to such conceptualizations. They seek out less sophisticated, artificially dichotomous models for conceptualizing about the multi-factorial nature of contributors to test results, or brain injury occurrence and its effects, or motivation and malingering.
• Avoid simplistic conceptual models thate are compatible with dichotomous approaches to assessing motivation/effort and malingering. Such approaches usually rely on a cutting score for one or two measures. Note that cutting scores, by their nature (Dwyer, 1996) always entail judgment; inherently result in misclassification; impose an artificial dichotomy on an essentially continuous variables; and "true" cut scores do not exit.
• Employ more sophisticated, and less dualistic and artificial dichotomous conceptualizations of malingering and motivation. Employ a reasonably sophisticated model that conceptualizes motivation and effort as continuous variables that can vary across tests, settings, and occasions. Utilize and devise models that measure degree of apparent motivation and effort, using multiple data sources, and estimate confidence levels in inferences given consideration of the multiple factors that contribute to test results. Employ similarly sophisticated models for assessing persistent impairments, adaptation to impairments, disability and so on (e.g., see Martelli, et al., in press)
• Don't dualize or polarize. Spend time with patients and try to get to know them from a motivational, emotional status, and personality and coping style perspective. If motivation seems poor, confront, vs. proceed with GIGO - this is not the "gotcha" or real scenarios. We can't be neuropsychocentric and assume that everyone takes our tests seriously, should be as honest or effortful on our tests as we would like, or that we won't have to work at getting them interested or motivated.

References

• Bernard, L.C.. (1991). The detection of faked deficits on the Rey auditory verbal learning test: the effects of serial position. Archives of Clinical Neuropsychology, 6, 81-88.
• Dwyer, C.A. (1996). Cut Scores & Testing: Statistics, Judgment, Truth, and Error. Psych Assess, 8, 4, 360-362.
• Jacobsen, R.R. (1995). The Post-Concussional Syndrome: Physiogenesis, psychogenesis and malingering. An integrative model. Journal of Psychosomatic Research, 39, 6, 675-693.
• Lees-Haley, P., & Brown, R.S. (1993). Neuropsychological complaint base rates of 170 personal injury claimants. Archives of Clinical Neuropsychology, 8, 203-210.
• Loring, D.W. (1995). Pscyhometric Detection of Malingering. Presented at the annual meeting of the American Academy of Neurology, Seattle.
• Martelli, M.F., Zasler, N.D., & Grayson, R.. (1996) Predicting Outcome Following Traumatic Brain Injury (TBI): Utility of a composite prognostic indicator checklist. Presented at N.A.N. annyal meeting, New Orleans.
• Martelli, M.F. (1997). Evaluating Psychological Vulnerability to Impairment & Disability: A Model and Method. Training seminar for the National Association of Disability Evaluating Professionals, Gainseville, FL; San Diego.
• Meyers, J.E. and Meyers, K.R. (1995). Rey Complex Figure and Recognition Trial: Odessa, FL: P.A.R., Inc.
• Mittenberg, W., Arzin, R., Millsaps, C., & Heilbronner, R. (1993). Identification of malingered head injury on the Wechsler Memory Scale. Psychological Assessment, 5, 34-40.
• Rutherford, (1989). Postconcussion Symptoms: relationship to acute neurological indices, individual differences, and circumstances of injury. In Levin, H.S., Eisenberg, H.M. Benton, A.L. (Eds) Mild Head Injury. N.Y.: Oxford University Press.
• Trueblood, W., & Schmidt, M. (1993). Malingering and other validity considerations in the neuropsychological evaluation of mild head injury. Journal of Clinical & Experimental Neuropsychology, 15(4), 578-590.
• Williams, J. M. (1992). The Memory Assessment Scales. Odessa, FL: Psychological Assessment Resources