HEALTHNET NEWS VOL. XV, NO. 3   FALL  2000
Lyman Maynard Stowe Library
University of Connecticut Health Center

Back to the Healthnet News Index


TABLE OF CONTENTS
           UPDATE
           New resources on Healthnet's homepage
           EmpowermentPlus Project
          NETNEWS
          Helpful information for older adults
          Profiles of herbs
          More on herbs
          Post traumatic stress disorder - a major public health problem
          Survey of doctor disciplinary reports
          Be a wise user of prescription medications
          On line sign language dictionary
         FOR YOUR CONSIDERATION
         Recommended consumer health books
         - Childhood cancer: a  handbook from St. Jude’s Children’s Research Hospital
         - Children with Fragile X Syndrome : a parents’ guide
         - The complete cancer survival guide : the most comprehensive, up-to-date guide for patients and their families.
         - Preemies: the essential guide for parents of premature babies
         UCHC RECENT ACQUISITIONS
           Healing children’s grief : surviving a parent’s death from cancer
 


UPDATE

NEW  RESOURCES  ON  HEALTHNET’S  HOMEPAGE

Mental Health Resources--A Guide for Patients and Families is a new feature on Healthnet’s  web page . Helpful for both consumers and health professionals, the Guide encompasses recommended books, organizations, and Internet websites on a variety of mental health-related topics. Among the topics included are children's mental health, therapy guidelines, medications, diagnosing mental disorders, organizations and agencies that provide help, and legal resources.

We’ve also added  some new important Connecticut Health web sites to the list of Internet Resources on our homepage.  Among these are  the  Connecticut Parent Advocacy Center .  The Center is a statewide resource for families of children with any disability or chronic illness, age birth through 21.  Other new sites include:   CTParentsplus , an organization with the mission to provide parents with the information and resources they need to feel confident and successful in their role as parents;  HUSKY Plan ,  healthcare for uninsured kids and youth in Connecticut with information on the comprehensive health care insurance plan for Connecticut children up to age 19 who have no health  insurance; and  Connecticut Elder Law Center  (for more information about this site see page 2 of this newsletter).

EMPOWERMENTPLUS   PROJECT

The first training session for our EmpowermentPlus project was held on Wednesday, November 8th at the Middletown  Library Service Center Computer Training Center.  Seven representatives from self-help groups and 3 reference librarians completed the all day hands-on training session.  Self-help groups and organizations represented included:  Connecticut Chapter of the Arthritis Foundation; Interstitial Cystitis Association – Connecticut Chapter;  Hepatatis C support groups in Farmington and Stamford; Amyotrophic Lateral Sclerosis Association – Connecticut Chapter;  Multiple Sclerosis Support Group – Griffin Hospital; Fibromyalgia Support Group – Griffin Hospital.

Training consisted of an introduction to PubMed, the online Medline database from the National Library of Medicine and  MedlinePlus, the consumer version of PubMed. Other content included how to evaluate Internet resources and health and medical newstories, how to find current and authoritative information about a disease or medical condition, and how to find information about physicians and other health care professionals and facilities.

Those who completed the training will be training members of self-help groups in their communities.  The staff person for the EmpowermentPlus project, Lynda Grayson, will be helping the trainers set up their sessions and will provide the trainers with all the training materials.

Another train-the-trainer session will be held on Wednesday March 21, 2001.  We are still looking for public librarians to participate in the project as trainers.  If you are interested and would like more details, please contact Alberta Richetelle at 860/679-4055 or email: richetelle@nso.uchc.edu  for more information.  This can be a great way for you to reach out to your community and provide training to consumers and at the same time promote your library as a health information resource.

Back to the Table of Contents

NETNEWS

HELPFUL  INFORMATION  FOR  OLDER  ADULTS

The  Connecticut Elder Law Center  offers comprehensive information on elder law, government programs (Medicare, Medicaid, Title 19, Social Security, etc.) and legal assistance for Connecticut seniors.  Topics include Connecticut specific information on the current situation in the state with HMO withdrawals, Medicaid and Medicare coverage for healthcare, prescription drug assistance, respite care, patient rights, living wills, power of attorney, and funeral planning.  Links are provided to elder law sites in other states.

Sponsors of the site include the America Bar Association’s Commission on Legal Problems of the Elderly, the U.S. Administration on Aging  under the Older Americans Act, the Health Care Financing Administration,  and the Connecticut Association of Area Agencies on Aging.  The Albert and Elaine Borchard Foundation Center on Law and Aging provided initial funding for the development of the Center. The  web site was created and is maintained by Edward Dale, Director of Elder  Law and Legal Assistance to Medicare Patients, Connecticut Legal Services, Inc., and Lisa Nachmias Davis, Elder Law attorney with the law firm of Tyler Cooper &  Alcorn, LLP.
PROFILES  OF  HERBS 

HerbMed  is an interactive, electronic database that offers scientific and general information on  thebiochemical action of herbs. HerbMed is produced by the Alternative Medicine Foundation, a private, non-profit organization that publishes The Journal of Alternative and Complementary Medicine.

HerbMed has profiles of 115 herbs with information on evidence of the herb’s activity, warnings and contraindications, methods of preparation, toxic and adverse effects, and mechanisms of actions.  Hyperlinks are provided to abstracts in PubMed, the National Library of Medicine’s index of medical journal articles.  These abstracts provide published evidence of the herb’s efficacy, toxicity, and adverse effects.  Pictures of many of the herbs are provided.  Users should be aware that although this site may be useful, there is a problem with site maintenance evidenced by the number of dead links.

MORE  ON  HERBS

Information From Your Family Doctor  is a site produced by the American Academy of Family Physicians (AAFP), a professional medical association with over 89,000 members.  Physicians who specialize in family practice are educated and trained to provide comprehensive medical care and preventive services for every member of the family, regardless of age, sex, or type of problem.

The AAFP site features drug information from USPDI  Advice for the Patient, as well as over 300 brief descriptions of medical conditions and terms associated with medical care and treatment, and 50 flow charts on conditions able to be treated at home with advice on when to see a doctor.

A special feature of Family Doctor is an herbal and alternative database with information on approximately 300 herbs, vitamins and mineral compounds, amino acids, hormones, essential fatty acids, and other compounds used to treat a  variety of illnesses.

Each profile includes a brief description of the herb or other alternative remedy, what it is used for, precautions before using, usual dosage,  storage requirements, and possible side effects or adverse reactions.  Each profile includes several references to studies reported in the medical literature on the efficacy of the herb or alternative therapy.
 

POST  TRAUMATIC  STRESS  DISORDER – A  MAJOR PUBLIC HEALTH PROBLEM

The  National Center for Post Traumatic Stress Disorder  offers information on their web site about the causes and treatment of post-traumatic stress disorder (PTSD).  PTSD is a psychiatric disorder that  can occur following the experience or witnessing of life-threatening events such as military combat, natural disasters, terrorist incidents, serious accidents, or violent personal assaults, such as rape. People who suffer from  PTSD often relive the experience through nightmares and flashbacks, have difficulty sleeping, and feel detached or estranged. These symptoms can  be severe enough and last long enough to have a significant impact on the person’s daily life.

The Center has been in existence since 1989 in response to a Congressional mandate to address the needs of veterans with military-related post-traumatic stress disorder. Under this mandate, the new agency would "…serve as a resource center for, and  promote and seek to coordinate the exchange of information regarding  all research and training activities of the Veteran’s

Administration and other Federal and non-Federal agencies. The mission of the Center is “…to advance the clinical care and social welfare of America’s  veterans through research, education, and training in the science, diagnosis, and treatment of PTSD and stress-related disorders.

Although originally established to address the concerns of veterans, the Center now recognizes that PTSD is a serious public health problem in the general population due to the high prevalence of assault, rape, child abuse, disaster, and severe accidental and violent trauma in the civilian arena.  PTSD is estimated to affect more than ten million American children or adults at some point in their lives.

Special features of the web site include fact sheets on PTSD and the different effects of trauma, information for veterans including treatment programs, specific information for female veterans, Native Americans, and Japanese American and Hawaiian veterans.  Other features include information for survivors of natural disasters and rescue workers, and a section on specific topics such as childhood trauma, motor vehicle accidents, anger, community violence, and criminal behavior.  A list of recommended books is also included on the web site.

SURVEY OF DOCTOR  DISCIPLINARY  REPORTS 

The Health Research Group (HRG) has published a report on doctor disciplinary information on state medical boards web sites. The complete report can be found  on HRG's web site. at http://www.citizen.org/hrg/publications/1506.htm. HRG is part of Public Citizen, a consumer watchdog organization founded by Ralph Nader.  Public Citizen has published consumer books such as 20,125 Questionable Doctors and Worst Pills, Best Pills: a consumer’s guide to avoiding drug induced death and illness.

HRG surveyed 51 boards responsible for regulating medical doctors to determine the current state of Internet-accessible disciplinary information.  The survey employed phone interviews, using a structured questionnaire, and examinations of the web sites. The survey revealed that:

* Forty-one boards name disciplined doctors on their web sites. Of these states, 24 began doing so in 1998, 1999,
   or 2000, while the others began in 1996 or 1997.
*The types of information provided on a given disciplinary action vary greatly from state to state. Only one state,
  Maryland, provides what HRG considers adequate information: the name of the doctor, the offense committed, the
  disciplinary action taken, a summary narrative of the misconduct, and the full text of the board order. Maryland was
  given a grade of "A" for content.
*Twenty-four states provide four of the five types of information listed above and were given a "B" for content.
*The other 26 states, including several of the most populous states, had content grades ranging from "C"
to "X" because of their failure to provide adequate information for consumers on the web. Connecticut was given
a grade of “C”.

A summary table of the study’s results is included with links to the state medical board web sites.

Connecticut  plans to provide more detailed information about licensed physicians and is currently collecting the data to be available on the Connecticut Department of Public Health web site.  Currently, information is provided on disciplined doctors in the Department of Public Health’s Regulatory Reports posted on their web site.  Unfortunately, the reports are not cumulative and cannot be searched by physician name.
 

BE A  WISE  USER OF  PRESCRIPTION  MEDICATIONS

Safemedication  is a site produced by the American Society of Health System Pharmacists, an organization of 30,000 member who practice in health care settings, such as hospitals, long term care facilities, home care agencies, and staffed HMO’s.

The purpose of the site is to help consumers find information they need to use their medications safely and effectively.  The user can find brief profiles of drugs by entering the generic or trade name of the drug.  The profiles include why the medication is prescribed, other uses of the medication, how the medication is used, precautions, side effects, storage requirements, and additional information necessary to use the medication safely.  The profiles are drawn from different sources including the Food and Drug Administration approved prescribing information, patient package inserts, the American Hospital Formulary Service: Drug Information, and  Drug Facts and Comparisons.

Other information on the site includes facts on antibiotic resistant bacteria, hypertension, medication errors, pneumonia, and nausea and cancer treatment.  Advice is given on how to use antibiotics wisely, how to help prevent medication errors, the use of alternative medicines, and the pneumonia vaccine.
ONLINE  SIGN  LANGUAGE  DICTIONARY 

Handspeak  is the largest sign language dictionary online.  Formerly called the Sign Language Dictionary Online at Deaf World Web, Handspeak is now an independent site.  Currently, there are over 3,000 signs with promises to add many more in short time.

The site authors claim there are many reasons for learning sign language even if you do not have a hearing impairment. Sign language (SL) is a 3-dimensional language, it’s beautiful unique, and graceful, scuba divers can communicate under water, you can be sure no one hears what you’re saying through closed doors, and you can communicate with your mouth full (Miss Manners, listen up).

Better than viewing a static printed book, each sign is demonstrated in action and repeats until another sign is selected. Signs may be viewed alphabetically or by five different categories – animals, colors, places, alphabet, and numbers. All of the signs are in American Sign Language (ASL). A few International Signs (IS) are given. Explanatory text and variants of words accompany some signs and phrases that use a specific word are given, for example  “sleep”, “sleepy”, “fall asleep”.

A special feature includes signs for babies.  The authors of this site claim research has shown that babies communicate physically before they can verbally.  Regardless of whether or not they can hear, babies as young as six months can learn a few basic signs to communicate – hungry, bottle, diaper, more, cookie, etc.  Other features include 3 signed short stories and information about the deaf culture.

Back to the Table of Contents

FOR YOUR CONSIDERATION

The following books may be of interest to public and health sciences libraries.  They are not part of the UCHC Library      collection.

Childhood cancer: a  handbook from St. Jude’s Children’s Research Hospital. R. Grant Steen and Joseph Mirro, editors. Perseus Publishing, 2000. 606 p. (ISBN 0-7382-0277), $30.00.

The dramatically increased survival rate of children diagnosed with cancer has led to parents’ need for information about educational recommendations, late effects of therapy, psychosocial effects of cancer on the child and her family, as well as information on current treatments. The staff of St. Jude’s Children’s Research Hospital, founded by entertainer Danny Thomas in Memphis, Tennessee, has written a thorough, comprehensive, understandable guide to childhood cancer diagnosis, treatment, genetics, and family coping, that is directed to parents.

With a focus on catastrophic diseases of children, St. Jude’s treats more than 4,000 patients annually. The medical staff conducts research as well as treating patients. This Handbook includes a background chapter on medical research involving children, and another on the process of participating in a clinical trial.

Individual chapter topics cover the biology of cancer, diagnostic imaging, alternative and complementary therapies, nutrition during treatment, immune therapy, and  insurance and financial issues.  St. Jude’s staff physicians, nurses, social workers, chaplains, and librarians participated in writing individual chapter.  The librarians provide a helpful, basic introduction to “Locating and Evaluating Medical Information on the World Wide Web.”

The experienced health professionals who wrote this book anticipate many of the concerns and questions of parents whose children are undergoing cancer therapy. For example, they discuss the frequent anxiety of parents waiting for laboratory results after radiation and explain that the positive effects of radiation therapy may not be evident until long after the treatment’s completion.

This very helpful book includes a chapter-by-chapter bibliography of references to medical journal articles cited in the text, an index, and an annotated list of websites with medical information.     (JK)

Children with Fragile X Syndrome : a parents’ guide.  Jane Dixon Weber, editor. Woodbine House, 2000. 460 p. (ISBN 0-933149-77-8), pap. $19.95.

One of more than fifty books in the Woodbine House’s unique Special Needs Collection, this Parents’ Guide provides a valuable and comprehensive introduction to the needs of children with Fragile X syndrome. Caused by a mutation on the X chromosome, Fragile X syndrome is the second most common cause of mental retardation. It is exhibited differently in boys and girls. Girls often exhibit no physical characteristics, but do have the learning disabilities, speech delays, and behavioral problems associated with Fragile X syndrome, sometimes to a lesser degree than boys.

Chapters were written by physicians, psychologists, researchers, and parents who have expertise in this inherited condition.

 The book is written with great understanding of the circumstances of parents, who are often bewildered and shocked when their child is diagnosed with Fragile X syndrome. Each chapter concludes with brief quotations from parents about the problems and challenges they face daily. Realistic and compassionate, the book discusses discipline, marital stress, effect on the extended family, as well as symptoms, medical problems and therapy, education, and support services.

This very helpful book includes a glossary, a reading list organized by book chapter, a resource guide of organizations and websites, and descriptions of the contributors’ backgrounds.  (JK)
 

The complete cancer survival guide : the most comprehensive, up-to-date guide for patients and their families.   Peter Teeley and Philip Bashe.  Doubleday, 2000.  972 p.  (ISBN 0-385-48605-7), pap.  $19.95.

Peter Teeley, the press secretary to President George Bush for six years and former U.S. Ambassador to Canada, was diagnosed with colon cancer in 1991.  He teams here with writer Bashe to offer a comprehensive guide for anyone with cancer and for those who care about someone with cancer.

This carefully researched and detailed guide describes the basics of cancer – how cancer begins, warning signs and symptoms, and causes.  Brief descriptions are given of the  25  most common types of cancer with each section covering the risk factors, warning signs and symptoms, and how the cancer is typically detected.  A separate chapter describes how each type of cancer is diagnosed and staged and includes the types of diagnostic and staging tests used. Staging provides doctors with a common language for communicating the size and extent of a patient’s cancer. Questions such as how staging is expressed and what the numbers mean are also covered.  Staging designations are also given for each of the 25 most common types of cancer.

Additional chapters describe issues related to getting a second opinion, treatment options, managing symptoms, side effects, and complications,  getting help when you need it, and when treatment ends.  All of the topics and concerns in similar comprehensive cancer guides are covered including cancer pain. alternative therapies, emotional and family issues, clinical trials, and working with your health care team.

Appendixes on cancer organizations offering information and support for patients and families and miscellaneous resources for people with cancer are included.  Although not as well organized as the American Cancer Society’s Informed decisions or Everyone’s guide to cancer therapy, this guide offers some new information for cancer patients, such as the very detailed description of cancer staging.  The  personal experiences of author Teeley and the general  tone of the writing also  makes this book  more reader friendly.

Preemies: the essential guide for parents of premature babies. Dana Wechsler Linden, Emma Trenti Paroli, Mia Wechsler Doron. Pocket Books, 2000. 512 p. (ISBN 0-671-03491-X), pap.  $19.95.

The stress of first time parenthood is heightened when the new baby is born prematurely. This occurs in one in ten births in the United States.  The difficulties of unanticipated, premature births, and the crucial beginnings of three premature babies’ lives were shared by two mothers of premature infants, who are journalists. They joined with a physician, who specializes in neonatology, to write this very comforting, and useful resource guide.  Only a few recent books focus on this topic.

This book guides parents from pregnancy through premature birth and the growth of a premature baby into school years. Many chapters include “A Parent’s Perspective,” feelings and experiences of a parent, and “A Doctor’s Perspective” that explains the physician’s viewpoint on related clinical issues and decisions.

Much of the information is presented in thorough responses to questions common to the premature birth experience. The answers are practical as well as technical, e.g. suggestions on how to cope with forced bed rest, do’s and don’ts about calling the neonatal intensive care unit. There is also information on the types of surgery that a premature infant may need, medical problems that often occur, developmental problems that can occur, and the grief process when a baby does not survive.

The appendices include a conversion chart from pounds to grams, growth charts, CPR instructions, a resource guide of organizations, a glossary of medical terms, and an index.

The parting tone is one of hope. After all, according to the last chapter in this book, Isaac Newton, Mark Twain, and Albert Einstein were born prematurely... (JK)

Back to the Table of Contents

UCHC  RECENT ACQUISITIONS

The following book was recently added to the UCHC Library Collection and may be of interest to consumers, public libraries, and health sciences libraries.

Healing children’s grief : surviving a parent’s death from cancer.  Grace Hyslop Christ.  Oxford University Press, 2000.  264 p.  (ISBN 0-19-510591-5), $45.00;  ISBN: 0195105915, pap.  $24.95. (UCHC Library
Call #: WS/105.5/A8/C554/2000)

This carefully researched and effectively written book is aimed primarily at professionals and students who provide services to children and their families and for researchers and teachers  who study childhood and adolescent bereavement. It may also be helpful to family members, friends, teachers, religious leaders, and other community members of the community who know children who have lost a parent and have the opportunity to help.

The book is about eighty-eight families and their 157 children (ages 3 to 17) who participated in a parent-guidance intervention through the terminal illness and subsequent death of one of the parents from cancer.  The intervention covers a critical 20 month period from 6 months before to 14 months after the death of a parent.

The first few chapters describe the theoretical background and methodology of the study.  Subsequent chapters present the findings of the five developmentally derived age groups (3-5, 6-8, 9-11, 12-14, and 15-17). Two chapters are devoted to each age group.  The first describes the pattern and differences in the children’s responses and ends with specific recommendations gleaned from the more successful interactions between child and family.  The second chapter offers extensive descriptions of the experiences of two families.  Each narrative concludes with a discussion about the different patterns of adjustment among the children. A summary chapter brings together all of the important findings.

A must read for professionals working with bereaved children and adolescents and an informative and helpful guide for friends and other members of the community who want to help families deal with this tragedy.

Back to the Table of Contents

Healthnet News is written by Alberta L. Richetelle with the assistance of Judith Kronick.
If you have questions about anything in the newsletter or about Healthnet services for
Connecticut public libraries,please call 860/679-4055; e-mail address: richetelle@nso.uchc.edu.

                                           © 2000  University of Connecticut Health Center.    All rights reserved.