ISSN 1535-7821
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      2002 Vol. 18 No. 1

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Link to ArticleNew Multilingual Health Information Web Site
Link to ArticleGuidelines for CAPHIS Connection Book Reviews
Link to ArticleThe CAPHIS Mentoring Task Force
Link to ArticleFrom the Chair

Link to ArticleBook Reviews

Kids with Celiac Disease
Prescription Drug Addiction: The Hidden Epidemic
Overcoming Teen Depression: A Guide for Parents.
Lung Cancer: Making Sense of Diagnosis, Treatment, and Options
Men's Cancers
Tourette's syndrome; finding answers and getting help

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Link to ArticleIn Every Issue

Link to ArticlePublication Information

Articles:

New Multilingual Health Information Web Site

By Tammy Mays
Consumer Health Coordinator
NN/LM Greater Midwest Region

Librarians are increasingly seeking multilingual online health resources to serve their diverse population of patrons. You can respond to this demand with the assistance of the Consumer Health Coordinators from the National Network of Libraries of Medicine. Take a look at the newly designed Multilingual Health Information web site. The Multilingual Health Information web site is linked from the Consumer Health Information Workshop: A Workshop for Librarians Providing Health Information to the Public .

The Multilingual Health Information web site provides links to useful health information, including Health Education Brochures in Multiple Languages from the University of Utah. It is organized by specific languages and glossaries by languages.

Guidelines for CAPHIS Connection Book Reviews

By Barbara M. Bibel
Librarian
Science, Social Science and Documents Department
Oakland Public Library

1. When you receive a copy of a book for review, you will also receive a deadline date, usually about two months after the book is mailed. If you cannot meet this deadline, please inform the editor immediately.

2. CAPHIS Connection book reviews should be approximately 250 words (one typed page, double-spaced) long. They may be shorter. Please e-mail finished reviews to Barbara Bibel, book review editor -- barbarabibel@earthlink.net -- as Word attachments or copied and pasted into the body of an e-mail message.

3. The review should convey a clear sense of the work's content and scope. Please evaluate the writing style, accuracy, reading level, etc. It is helpful to compare it to other works on the same subject. Note the author's qualifications, credentials, affiliations, and other published works.

4. Cite the book that you are reviewing at the head of the article using the following model:

Roan, Sharon L. Our Daughters' Health: Practical and Invaluable Advice for Raising Confident Girls Ages Six to Sixteen. Hyperion, 2001. 416p. index. ISBN 0-7868-8500-9. $14.95.

5. Put your name, name of your institution, city, and state at the end of the review.

6. Reviewers are responsible for the accuracy of the statements included. Reviews will be edited for grammar, length and style.

The CAPHIS Mentoring Task Force

By Gail Hendler
Chair
CAPHIS Mentoring Task Force

The Mentoring Group describes mentoring as, "the process in which successful individuals go out of their way to help others establish goals and develop the skills to reach them." However, mentoring is also the process whereby an experienced colleague guides, advises, supports and shares professional experience and knowledge with a less-experienced colleague. This trusting, enriching and extremely valuable relationship oftentimes results in lasting friendships that benefit mentor and mentee, as well as their respective institutions and their profession. Developing successful future leaders is an important and vital sign of a professional society committed to the ongoing development of its members.

With this in mind, the Consumer and Patient Health Information Section (CAPHIS) of the Medical Library Association established a CAPHIS Mentoring Task Force in July, 2001. A call for volunteers was posted via the listserv, and the names of those who volunteered to serve as Task Force members are listed below. Since the summer, the primary goal of the Task Force has been to determine whether the CAPHIS members actually have an interest in and/or a need for establishing a section-sponsored mentoring program tailored to consumer health specialists. The Task Force has been working on the best ways in which to measure this need, and is now delighted to report that the CAPHIS Mentoring Service Needs Assessment Survey is now in its final stages of development. The Task Force hopes to disseminate the survey via the CAPHIS listserv in January, 2002. The survey should not take more than 10 minutes to complete. Responses should be forwarded to Jo-Ann Babish and Marge Kars. The Task Force is hoping for a good response from the membership, and appreciates all responses it will receive as the survey's results will direct the next phase in planning.

Questions or comments should be directed to Gail Hendler, via e-mail at hendler@library.med.nyu.edu.


 The Task Force is comprised of:
 
 Gail Hendler, Chair
 hendler@library.med.nyu.edu
 
 Jo-Ann Babish
 jbabish@mth.org
 
 Erica Burnham
 eburnham@nyam.org
 
 Marge Kars
 karsm@bronsonhg.org
 
 Brenda R. Pfannenstiel
 bpfannenstiel@cmh.edu
 
 Janet  M. Schneider
 karsm@bronsonhg.org

From the Chair

Dear CAPHIS colleagues:

CAPHIS has a number of ambitious goals this year, many of them are a continuation of activities begun last year by our very active & able Past-Chair Michele Spatz. New is the CAPHIS Mentoring Task Force - you will be receiving a survey in January from Gail Hendler to determine if there is enough interest from the section to move this initiative further. Please respond!

CAPHIS MIDYEAR REPORT 2001-2002

Strategic Goal: Information Technology

CAPHIS has a very active Website Committee that is continuing to work diligently on the redesigned CAPHIS Website that was launched May 1, 2001. Some new features include: a fresh look and new logo; graphic navigation bars on tops and sides with text navigation at the bottom; enhanced information about CAPHIS; and more information about managing a CHI service. "Consumer Connection," the CAPHIS Newsletter moved to an electronic format with April-June 2001 issue 17(1) and is available on the CAPHIS Website.

Future directions for the CAPHIS site include: establishing guidelines for the Website Committee and Editor; developing quality assurance procedures for posting material on the CAPHIS site; and further enriching the content on the CAPHIS site. The CAPHIS Website continues to be monitored and updated by the Webmaster. The Website served up an average of 18,270 pages a month from May 1 to November 1 to an average of 5,550 unique individuals. The site statistics can be found at: http://mlanet.org/tech_is/stat/caphis.

Prof. Feili Tu, an instructor of the Medical Libraries and Reference Class at San Jose State University Graduate School of Library and Information Science, is working with the Website Committee on a Usability Study of the CAPHIS Website. The class will submit a written report of their findings to CAPHIS in January 2002. Future plans for the website will be decided after results of the usability study are reviewed.

CAPHIS Website Committee Task Force Members: Rosalind Dudden, Sharon Gilbert, Dolores Judkins, Andrea Kenyon, Heidi Sandstrom, Michele Spatz (Chair).

To accomplish a critical review of the CAPHIS Top 100 Health Websites/ "Websites You Can Trust," a CAPHIS Website Top 100 Subcommittee was formed and met at MLA in Orlando. They will be starting a review of the program after January 1. The CAPHIS Directory is also being looked at and will be revised.

CAPHIS Top 100 Health Subcommittee Members: two year terms - Jennifer Friedman, Karen Keller, Kelly Near, Tanya Smith; three year terms - Tracy Bearden, Susan Blaskevica, Amy Frey, Naomi Miller; ex-officio - Rosalind Dudden (CAPHIS webmaster), Michele Spatz (CAPHIS Website Committee Chair)

Strategic Goal: Advocacy

The redesign of the CAPHIS brochure began last year following the approval of the new CAPHIS logo. A draft was presented at the CAPHIS Business Meeting at MLA 2001, and it was agreed that some more fine-tuning was necessary. We hope to complete the brochure revisions by the MLA 2002 Meeting in Dallas.

Strategic Goal: Professional Development

CAPHIS has established a Mentoring Task Force. The Task Force has been working to first determine if the level of interest among CAPHIS members is sufficient to establish a section-sponsored Mentoring Service unique to consumer health specialists. Therefore, the Task Force first began to create a needs assessment tool in August, 2001 that is meant to determine the membership's response to a Mentoring Service. The tool will be disseminated to the membership via the listserv in early January 2002. Should the survey's results show a high level of interest and a corresponding level of commitment, the Task Force will recommend to the Executive Board that a Mentoring Service be established for CAPHIS.

Task Force Members: Jo-Ann Babish, Erica Burnham, Marge Kars, Janet Schneider, Gail Hendler (Chair).

Michele Spatz is CAPHIS's representative on the MLA Consumer Health Continuing Education Credential Task Force - this program has been in a preliminary stage since January 2001. The Task Force is developing the final policies and procedures for the MLA Consumer Health CE Credential. They have been meeting regularly and have worked through the thorny details regarding the Consumer Health Credentialing program. Kathleen Gaydos Combs and Debra Duffenbach are drafting the final program document that will be shared with the Task Force for review before it is posted on MLANET and new brochures are printed. The timeline for the review is January 2002 and is scheduled to be completed in the beginning half of 2002. After it is launched as an official program, two members of the CE committee and the CAPHIS liaison will remain as advisors for marketing activities with members, helping assess applications, researching and organizing courses/instructors, etc.

Task Force Members: Mary Van Antwerp, Katy Nesbitt , Mary Fran Prottsman, Susan Speer , Kay Wellik; Credentialing Committee Liaison: Becky Lyon - NLM Liaison, Michele Spatz - CAPHIS Liaison, Priscilla Stephenson (Chair).

CAPHIS is also exploring initiating a CAPHIS grant or scholarship.

Strategic Goal: Organization

The CAPHIS Treasurer has begun putting together an Executive Manual.

CAPHIS has appointed a Task Force to write the Section's history. Task Force Members: Andrea Kenyon, Kathy Moeller, Michele Spatz (Chair).

Respectfully Submitted by Susan Murray, CAPHIS Chair, 2001-2002

Book Reviews:

Korn, Danna. Kids with Celiac Disease. A Family Guide to Raising Happy, Healthy Gluten-Free Children. 252p. Woodbine House, 2001. $17.95. ISBN 1-890627-21-6.

Although most people think that celiac disease is rare, it affects one out of every 150 people. More than two million Americans have this genetic autoimmune condition. Since the bloating, cramping, and diarrhea caused by an intolerance of gluten are common symptoms, getting a diagnosis may be the hardest part of dealing with celiac disease. Untreated, the disease will cause malnutrition, osteoporosis, and intestinal cancer. Once diagnosed, a gluten-free diet will end the uncomfortable symptoms. Children with celiac disease will develop normally and lead active lives if they adhere to the diet.

Ms. Korn learned about celiac disease when her son was diagnosed in 1991. With the help of a group of contributors- a psychologist, a nutritionist, two physicians, and an adult with celiac disease- she has written a very useful guide for parenting children with this condition. She discusses the diagnosis, the diet, and how to integrate gluten-free foods into daily life. Since wheat, rye, barley, and oats contain gluten, those with celiac disease must not eat any foods containing these grains. The author provides commonsense, supportive advice about dealing with family life, school, social occasions, and eating out. She also provides information about gluten-free foods and an excellent resource guide listing support groups, Web sites, organizations, publications, food manufacturers, and summer camps. A valuable section on legal rights and benefits will help parents who need to negotiate with school districts. A glossary and an appendix with a Quick Start Diet Guide for Celiac Disease complete the work.

Parents raising children with celiac disease will appreciate this book. It empowers them by providing useful information and encouraging them to involve their children in self-care. By granting this control, the children will become responsible for their health and grow up to become confident adults. Woodbine House has produced another excellent guide for parents of children with special needs.

Review by:
Barbara M. Bibel
Oakland Public Library
Oakland, CA

Colvin, Rod. Prescription Drug Addiction: The Hidden Epidemic. Addicus Books, 2002. 191 p. index. ISBN 1-886039-52-6. $15.95.

It's estimated that in 1999 nearly 9.3 million Americans reported using prescription drugs for nonmedical purposes. And with increasing reports of the abuse of prescription drugs such as the opiate, OxyContin, this is a timely book. Rod Colvin, a former broadcast journalist, was motivated by the death of his brother from prescription drug addiction to write this book in order to bring this nationwide problem to the attention of the public. This is a revised and updated edition of his 1995 title, Prescription Drug Abuse: The Hidden Epidemic (Addicus Books).

The book is divided into three sections: Coping with addiction; Obtaining fraudulent prescriptions; and Efforts to curb abuse.

The text is sprinkled with first-person accounts of drug addicts, who not only describe their descent into addiction but also reveal the turning point in their lives leading to recovery and offer advice for others. The author discusses treatment options, including the controversial treatment, rapid detox, and the need for support for family members. Health professionals discuss treatment methods in their own words.

Colvin also discusses the methods that addicts use to obtain fraudulent prescriptions from physicians and pharmacies. Finally, he gives an overview of law enforcement efforts and how states are monitoring and controlling prescription drug abuse. The appendix includes an annotated list of resources.

This book helps to fill a gap; little has been written for the layman on this topic. Overall, it's a good, easy to read introductory work for the general public on a problem that has gotten little exposure.

Review by:
Carol Aebli
Borgess Medical Center
Kalamazoo, MI

Kaufman, Miriam. Overcoming Teen Depression: A Guide for Parents. Firefly books, 2001. $16.95. ISBN 1552095207.

Overcoming Teen Depression, written by a Canadian psychiatrist who has worked with adolescents for many years, provides a general overview of the diagnosis and treatment of depression. Its greatest flaw is in trying to cover too much material. The coverage of some subjects is too limited to be useful for parents seeking immediate help.

Kaufman discusses normal adolescent development and the different types of depression. She notes that depression may manifest itself differently in teens than in adults. She also looks at the various theories about the causes of depression and at related social and political issues.

The section on treatment looks at drug therapy, psychotherapy, and alternative and complementary treatments. There is information on choosing a therapist, different types of therapy, and what to do if something goes wrong. The discussion of the uses of herbs and supplements, electro- convulsive therapy, light therapy, homeopathy, and acupuncture to treat depression is a unique feature of this book. Other topics covered include anxiety disorders, medical conditions that may cause depression, depression in gifted or learning disabled youth, eating disorders, ADHD, grief, other mental disorders, and suicide. She also discusses racism, homophobia, gender, and poverty as factors in depression. Unfortunately the information on racism is limited to Canadian native peoples and the section on substance abuse does not include marijuana or methamphetamine. The book does not have a bibliography. While there is some worthwhile information here, librarians should also retain their copies of Douglas A. Riley's The Depressed Child: A Parent's Guide for Rescuing Kids (Taylor Trade Publishing, 2000) and Helping Your Depressed Teenager: A Guide for Parents and Caregivers by Gerald D. Oster and Sarah S. Montgomery (Wiley, 1995). The drug information in these two books is out of date, but the other material is valuable.

Review by:
Eris Weaver
Redwood Health Library
Petaluma, CA

Johnston, Lorraine. Lung Cancer: Making Sense of Diagnosis, Treatment, and Options. O'Reilly, 2001. 511 p. index. ISBN 0-596-50002-5. $27.95

Why are there so few books about lung cancer for patients and their families?

According to the American Cancer Society, lung cancer is the leading cause of cancer deaths for both men (31%) and women (25%). It accounts for three times more deaths in men than prostate cancer, and one and a half times more deaths of women than breast cancer. This reviewer is aware of six current consumer-oriented titles on lung cancer, while there are hundreds on breast cancer and dozens on prostate cancer. Given the lack of material on the subject, Lung Cancer: making sense of diagnosis, treatment & options goes a long way to filling the need for more books on the subject.

All aspects of lung cancer are covered in depth including symptoms, diagnosis, treatments, recurrence, clinical trials, coping, and end-of-life issues. The style is clear and objective. The book strives to be the consumer reference for lung cancer, and succeeds rather well. However, this means it is long, dense, and the reading level required is quite high. There are only six black-and-white drawings in the book, one quite technical. A better choice for patients dealing with literacy issues or desiring a more accessible text is Lung Cancer: a guide to diagnosis and treatment by Walter Scott (2000).

Like all O'Reilly's Patient-Centered Guides, Lung Cancercontains personal stories from patients and their families alternating within the text with practical and medical information about the disease. The patient stories are italicized and some are quite long. While most were illustrative of the text and many were touching to read, mentally switching from factual information to personal stories and back again may be distracting to some readers. Editorially, the use of sidebars or boxed quotes would be less disruptive to the flow of the information, and might have been a better choice.

Johnston has a degree in life sciences. Her strong interest in cancer and cancer survivors is a result of her personal experiences with family members with the disease, including her husband and a parent. This is Johnston's third book, following Non-Hodgkin's Lymphomas and Colon and Rectal Cancer.

In the preface, Johnston "suggest[s] you read only the material you need at a given time instead of reading cover-to-cover." This is a valid suggestion, especially since the scope of the book is so comprehensive. All in all, this is an important addition to the literature available for consumers about lung cancer.

Review by:
Barbara J. Henry
Eugene du Pont Preventive Medicine & Rehabilitation Institute
Wilmington, DE

Pamela J. Haycock, R.N., ed. Men's Cancers. Hunter House, 2001. 350p. $29.95. ISBN 0-89793-267-6; paper $19.95 ISBN 0-89793-266-8.

Pamela Haycock, a nurse specializing in cancer care and education, is the general editor of this book about cancers affecting men. All of the contributors are nurses who are experts in the topics that they present. They offer readers a good overview of cancer diagnosis, treatment, survivorship, and quality of life issues.

The book has four sections. The first explains what cancer is and how it is diagnosed. It also includes information about choosing health care providers and participating in the treatment process. Part two covers the different types of cancers. It includes those affecting men only-prostate, testicular, penile-as well as those that affect men more often-lung, colorectal. There are also discussions of male breast cancer and cancer in boys. The third section explains treatment options, including surgery, radiation, chemotherapy, biotherapy, and complementary and alternative therapies. The authors discuss the decision making process and explain clinical trials, too. The final section is about quality of life issues, including pain control, sexuality, end-of-life and palliative care, and survivorship. A bibliography and resource list of print, media, and Web sources offer further information.

Men's Cancers is an excellent source for patients and their families because it encourages active participation in the care process. It empowers both patients and caregivers to explore all options and choose what is best for them. By offering accessible information and explaining the politics of cancer and the importance of self-advocacy, the authors show patients how to get the best care for their cancer and the best quality of life during and after treatment.

Review by:
Barbara M. Bibel
Oakland Public Library
Oakland, CA

Waltz, Mitzi. Tourette's syndrome; finding answers and getting help. Sebastopol, CA: O'Reilly & Assoc., c2001. 400p. pbk. $24.95 US, $37.95 Can. ISBN 0-596-50007-6.

Author Mitzi Waltz has a child with Tourette's syndrome and consulted with physicians, nurses, researchers, support groups, and other Tourette's parents to produce this book for families facing a disconcerting diagnosis. Tourette's occurs worldwide with varying symptoms which may be complicated by obsessive-compulsive disorder, ADHD, and other conditions.

Symptoms, diagnosis, and related conditions are covered, followed by a practical and poignant chapter, "Growing up with Tourette's syndrome." Because Tourette's can rarely be hidden, this chapter provides "tools for self-protection," "tools for changing the culture," and advice for parents on dealing with their children's behavior.

Accommodating Tourette's syndrome in the classroom is not easy. In "School issues," the author stresses that parents must become advocates and may need to help select the most appropriate school setting, design individual study plans, educate teachers, and be prepared to put up an informed and possibly legal defense of their child's right to a good education. Another chapter outlines the transition to adulthood: higher education, training, finding a job, forming relationships, and managing symptoms.

A full 100 pages are devoted to drug and other interventions for Tourette's and associated conditions, with questions to ask one's doctor and information on potential drug interactions and side effects. Instructive sections discuss what to expect if hospitalization is required. Complementary or alternative treatments are mentioned, though few are actually cited in the chapter references. Insurance is covered in some depth, with advice to help the novice: selecting insurance, fighting denials of care, and tapping into Medicaid and other government programs. Benefits in Canada, the U.K., Australia, and New Zealand are also discussed briefly.

Excellent detailed appendices provide addresses and web sites for support groups, drug company programs, specialty clinics, and state and provincial mental health agencies. There are short bibliographies of books and videos, basic genetic tables, and annotated lists of diagnostic and psychiatric tests.

This book is written for educated adults and covers many technical topics. Giving it life and human interest are the many snippets of personal narrative from Tourette's patients and families. These may uplift, sadden, or warn, but they will convince parents of a newly-diagnosed child that they are not alone. Recommended for public, medical, and consumer health libraries.

Review by:
Nancy Crossfield
Saint Agnes Medical Center
Fresno, CA

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Publication Information

Statement

Consumer Connections (ISSN 1535-7821) is the newsletter of the Consumer and Patient Information Section of the Medical LibraryAssociation and is published quarterly.

Content for each issue is cumulated online at http://caphis.mlanet.org/newsletter, primarily during the first two months of the quarter; the issue is considered complete at the end of the quarter. Notification of publication is sent quarterly via the CAPHIS listserv. Newsletter articles and book reviews are copyrighted; please contact the editor for reprint permission.


Submissions

Please submit items for Consumer Connections during the third quarter for publication in the following quarter.

Submit by this month:
For publication in this issue:
March April-June
June July-September
September October-December
December January-March

Please send submissions in electronic format to the editors:

Howard Fuller
E -mail: howard.fuller@medcenter.stanford.edu
Telephone: (650) 725-3308
or
Nancy Dickenson
E -mail: nancy.dickenson@medcenter.stanford.edu
Telephone: (650) 725-8100
Fax: (650) 725-1444

 

      2002 Vol. 18 No. 1
ISSN 1535-7821

Home About CAPHISManaging a CHISContact UsFor Health Consumers

CAPHIS, the Consumer and Patient Health Information Section, is a section of the Medical Library Association, an association of health information professionals with more than 5,000 individual and institution members. MLA fosters excellence in the professional achievement and leadership of health sciences library and information professionals to enhance the quality of health care, education, and research.

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