CPG Development in Action: Birth of a Guideline

by Jacqueline Vance, RNC

What prompted the American Medical Directors Association to create new clinical practice guidelines on diabetes and Parkinson's disease? The availability of innovative approaches to the management of these diseases? Some missteps in the way we presently approach these diseases in longterm care? Do old habits die hard with respect to the treatment of these diseases? Or is it the potential complexity of newer pharmacological interventions in the presence of multiple comorbidities?

The decision to develop new guidelines is multifactorial, and in the case of diabetes and Parkinson's disease, all of the above reasons played a role. This article presents readers with a behind-the-scenes look at CPG development--a process that, like the birth of a baby, is a highly anticipated event.

Conception

Last January, AMDA's Clinical Practice Guideline Steering Committee--a multidisciplinary team that includes representatives from such organizations as the American Association of Homes and Services for the Aging, American Health Care Association, American Society of Consultant Pharmacists, American College Association of Directors of Nursing Administration, and the National Conference of Gerontological Nurse Practitioners--came together to decide on new guideline topics. Topic ideas are drawn from morbidity and mortality reports, requests from members of AMDA and other organizations, and reports from regulatory agencies. In making a decision, the committee considers such factors as the difficulty of development and implementation and relevance to AMDA members and other members of the care team.

At that meeting, many guideline topics are discussed, but only two can be selected. Why were these conditions chosen?

With respect to Parkinson's disease--a degenerative neurologic disease that progresses relentlessly--the committee concurred that there is a lack of specialty input for managing the disease in the long-term care setting and that difficulty in properly dosing medications in light of multiple comorbidities and the risk of significant adverse drug reactions (ADRs) make optimal treatment difficult. They also felt that rehabilitation specialists could use guidance in setting appropriate treatment goals. Overall, the committee felt that a systematic approach to the recognition and optimal treatment of Parkinson's disease in nursing facilities should be developed.

With respect to diabetes, the committee agreed that here, too, there is a lack of knowledge about optimal management in the nursing facility setting, including cost/benefit information. The cost of supplies, drugs, monitoring, and physician care need to be taken into account when managing a diabetic patient, the committee said. In addition, there is inadequate documentation of explicit goals of therapy for patients with multiple comorbidities--particularly for those who are very frail or near the end of life. Other reasons for developing a diabetes guideline included the potential complexity of newer pharmacologic interventions, insufficient knowledge about the type and frequency of available blood glucose monitoring, inadequate recognition and management of diabetic complications, and inadequate patient and family education.

Development Phase

In this phase--which began on August 24, when workgroups of carefully chosen experts gathered in Washington, DC, for a two-day consensus conference--the embryonic CPG concept becomes more clearly defined. Prior to the meeting, workgroup members reviewed the literature on their respective topics and the framework for CPG development.

At the Saturday morning general session, when the workgroups, steering Chair of AMDA's Clinical Practice Committee, gave direction and defined the purpose of the session. Dr. Levenson, who is also Chair of Caring's Editorial Board, emphasized the need for a "systemic approach" to improving the quality of care in nursing facilities. This comes not out of fear of regulatory sanctions, he said, but from approaches such as CPG development for specific diseases and conditions.

But developing effective CPGs is a formidable challenge. How to incorporate the magnitude of information into the care process and come up with a practical, userfriendly tool that brings about positive change? Undaunted, the workgroup members embarked on their mission of coming to a consensus on disease recognition, diagnosis, treatment, and management.

Labor Pains

Both groups had to work through the pain of controversy before reaching a consensus. Parkinson's Disease Workgroup Co-Chairs Charles Cefalu, MD, Professor and Associate Chairman for Geriatric Program Development in the Department of Family Medicine at the Louisiana State University Medical Center in New Orleans, and Lisa Cantrell, RNC, President of the National Association of Geriatric Nursing Assistants, had many difficulties to work through.

A major challenge involved specialist consultation. Since the services of neurologists and neuropsychiatrists are not routinely available to long-term care facilities, the workgroup had to develop a process aimed at helping facilities determine when specialty consultations are necessary, how to document the need for those services, and what goals or outcomes could be expected from such consultations.

Another challenge was how to realistically adapt information about treatment options to the long-term care setting, where specific needs, concerns, and issues need to be addressed.

The workgroup also acknowledged that the management of Parkinson's disease--perhaps more so than most other chronic conditions in long-term care--often involves many disciplines, including physical, occupational, speech, and recreational therapists. The new CPG would have to clarify the roles of these various specialists. For example, workgroup member Danielle Dodman, a speech therapist, outlined indications symptoms of swallowing problems, thus signaling the need for a speech therapist.

A neurologist and a nurse practitioner in the workgroup disagreed about various other assessment scales that were available, and whether they were suitable for long-term care. As arguments heated up about what some of these experts use in their community practice, Dr. Cefalu had to remind the group that what is appropriate for the community is not always appropriate for long-term care. Similarly, some ideas presented by workgroup members who work in multiple settings simply were not feasible or cost-effective options for long-term care.

On the diabetes front, the workgroup decided to step into uncharted waters. Co-Chairs Naushira Pandya, MD, CMD, an endocrinologist and certified geriatrician, and Harlan Martin, RPH, CCP, FASCP, a senior care pharmacist and President of Pharma-Care and Creative Care Consulting in Clark, NJ, also emphasized the realities of long-term care.

"We have what you call 'cheater eaters' in nursing homes," Mr. Martin said. "The dietary indiscretions both by the resident and their family members are a reality." On the other hand, added Dr. Pandya, "there is a growing consensus that there is usually no role for restricted diets in nursing home residents with diabetes."

Dealing with this reality caused the group to throw away some conventional ideas--such as enforcing the 1800-calorie American Diabetes Association diet--and look at ways of maintaining a regular diet based on an individual's weight, activity level, dietary likes and dislikes, and so forth, and estimating the inevitable calories coming from "forbidden" foods.

Registered Dietitian Lin Nyce, Chair-Elect of Maryland Consultant Dietitians in Healthcare Facilities, said that families are more likely to admit to sneaking in such foods--and to work with the dietitian in selecting them--if they know that the selections are being factored into their family member's diet.

Blood sugar monitoring was another area in which the group acknowledged that some current practices are a bit archaic and just not practical.

"What's with this practice of doing fingersticks for blood glucose on Mondays and Thursdays, or twice a day on even days, or some other ridiculous time frame?" Dr. Levenson asked the group. "Why automatically give sugar and orange juice for low blood glucose, and then take a blood glucose level after that and give insulin based on the sugar rush? Instead, we need to develop a practical, step-by-step process with time frames. For example, how much time should elapse between the recognition of glucose instability and reporting it to the physician?"

The workgroup decided that blood sugar monitoring should be based on the individual's needs. The group was also bold in its decision that sliding scale insulin should be used for a limited amount of time on an acute basis only.

"It's sad to see that many physicians don't work to control the resident's blood sugar," commented Dr. Levenson. "Instead, they rely on sliding scale insulin therapy to lower an already elevated blood sugar when harm is being done with sugars over 200. It's not fair to the patient."

"We need to be sure our guideline emphasizes a responsibility for controlling blood glucose levels before they get out of control," Dr. Pandya agreed. "We need to change our habits," Dr. Levenson added.

Birth to One Year

The Parkinson's disease and diabetes CPGs are now in the "first draft" stage after having been pulled together by a medical writer. The co-chairs and committee members agree that the process, though laborious, has been well worth the effort. As far as Parkinson's disease goes, literature searches came up blank for guidelines specific to long-term care. "We are taking this opportunity to break new ground," Dr. Cefalu said.

Insofar as diabetes is concerned, Mr. Martin commented, "I'm excited about what we are creating here. It's amazing how much knowledge is needed just to define what diabetes is in a way that reflects current knowledge." For example, Dr. Levenson had noted that diabetes is not a problem of just glucose but of total metabolism.

Next steps include sending the first drafts to the workgroup co-chairs, CPG Steering Committee chair, and chair of the Clinical Practice Committee. They confer with each other and tweak the drafts into workable documents.

The chairs' comments are then sent to the medical writer, who revises the drafts; these are sent to workgroup members for review and comment.

The workgroup members' comments are sent back to the chairs; the medical writer then puts together yet another draft of each CPG. The third draft is sent to external reviewers who are recognized experts in the area covered by the CPG. The reviewers' comments are compiled, sent to the chairs for review and approval, and then to the medical writer for incorporation into the final draft.

Finally, the new CPGs are designed, formatted, and printed; for the Parkinson's disease and diabetes CPGs, this is expected to occur in the Fall of 2002.

At that point, the CPGs will be ready and available to improve the quality of life of our frail elderly. Quite an achievement for a one year old!

Caring Contributing Writer Jacqueline Vance, RNC, is Director of Clinical Affairs for the American Medical Directors Association.

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