Notebooks designed to fill the gap help rural patients

Long drive to city not always an option

Although Valley View Hospital in Glenwood Springs, CO, had used grant money to purchase a comprehensive breast cancer notebook, it did not fit its patient population. "It was a great resource; but it wasn’t entirely applicable to our valley, so we customized it," says Susan Laws, RN, MS, education resources manager for the 80-bed rural facility located about 180 miles from Denver.

Because the notebook focuses on local physicians’ practices and resources that easily are accessible within the community, patients say that it is more useful than anything else they have been given. People often assume that patients can drive to Denver for medical care and resources, yet it is not always appropriate or necessary, says Laws. To create a notebook suitable for its rural patient population, Valley View Hospital created a committee to determine what information to include from the purchased workbook and what needed to be changed. Laws then put together a rough draft for review by the oncologists on staff, the radiologist, internal medicine physicians, the oncology department staff, and the general surgeons. On average, 75 are distributed to patients each year.

The notebooks are good news and bad news, says Laws. The good news is that they are being used, and the bad news is that they are needed.

The notebooks are about 130 pages and are very comprehensive. The emotional aspects of having breast cancer are included with much of this information coming from the original book. There also is quite a lot of information on sexuality and breast cancer that was obtained from M.D. Anderson Cancer Center in Houston. Laws obtained permission to use copyrighted materials from other health care organizations.

Information that is specific to the area includes local insurance coverage, the case management process at Valley View Hospital, and the Colorado CPR directive that provides instructions for emergency medical service workers. Also included are listings of support groups, supportive care at the end of life, and a comprehensive resource list with local and national contacts.

There is a lot of general information in the booklet, such as the different types of breast cancer, its stages, tests physicians might order, treatment options, self-care, and a glossary of medical terms. Laws worked with a physical therapist at the hospital on a section about lymphedema. This section complements a book that is included with the material titled Recovering from Breast Surgery by Diana Stumm, published by Hunter House in Alameda, CA. A piece on breast reconstruction after a mastectomy was written by the hospital’s plastic surgeon, and Laws worked with the oncology nurses on the chemotherapy section.

"Most patients receive the notebook in the general surgeons office when they get their diagnosis. Patients are finding it gives them a lot of information on what they can expect," says Laws. They learn that the emotions they are feeling are normal and where to find resources in the valley such as a wig if they choose to wear one after chemotherapy treatments.

Workbooks meet other needs

Following the success of the breast cancer education notebook, Laws looked for other areas that would benefit from a comprehensive education packet. She based her decision for notebook topics upon needs assessments from staff. A cardiac rehab notebook is given to patients who participate in the cardiac rehab program. Initially, Laws worked with a cardiac rehab specialist on the material to be included before health care providers who work with these patients reviewed it. There is an extensive section on cardiac medications, information on nutrition, and also depression. Specialists in these areas helped write the copy.

A notebook on heart failure was just introduced. It came about following a needs assessment with the nursing staff on the acute care unit. They were having difficulties finding time to hit all the details that should be covered when teaching heart failure patients according Medicare mandates. "There are core measures that have to be tracked on several different diagnoses, and one is heart failure," says Laws. These include exercise, diet, medications monitoring, signs and symptoms, and follow-up. The heart failure notebook covers these topics extensively as well as a discussion of what heart failure is. It also contains a glossary of medical terms.

There isn’t as high a need for the cardiac rehab and heart failure notebooks as there are for the breast cancer notebooks. Laws initially printed 25 of the notebooks to support teaching in the cardiac rehab program and 20 for heart failure patients. But the notebooks are expensive. One printer wanted $150 per notebook to print them. Therefore, Laws uses a computer printer to make copies that include color. However, she hopes to obtain a grant to purchase a color copier. This year, she budgeted $32,000 for supplies such as notebooks and dividers.

The hospital has enough Spanish-speaking patients to warrant the translation of the material, and Laws is working on that. About half the breast cancer notebook is translated, and the others will be next in line. The hospital is using an in-house translator on the project, she says. A notebook for diabetes containing information on self-care also is distributed to patients. Most of this material is from a commercial vendor and the American Diabetes Association.


For more information about creating notebooks to support teaching in a rural health care setting, contact:

Susan Laws, RN, MS, Education Resources Manager, Valley View Hospital, 1906 Blake Ave., Glenwood Springs, CO 81601. Telephone: (970) 947-5576. E-mail: