Coming of Age
by Janice Crosier, RN, MBA and Lowell C. Wise, RN, DNSc
Abstract: Cystic fibrosis patients and their caregivers face unusual complexities when these patients move from the pediatric to adult setting. (Nurs Manage 2001:32(11):30-31
Thanks to medical advances, cystic fibrosis (CF) patients live years-even decades-beyond what was once their normal life expectancy. No longer a childhood disease, adolescent and adult CF patients challenge non-pediatric staff to understand their specific care needs.
CF affects one in every 3,900 babies.1 Secondary complications of the disease include diabetes, cirrhosis, sinusitis, and arthritis. In the 1960's, CF patients lived approximately 10 years. Today, more than 60 percent of babies born with CF reach adulthood, and further advances, particularly in the field of gene therapy, may produce even better treatments in the coming years.2
This remarkable improvement is attributed to various factors, including:
- Increased recognition of good nutrition
- Advanced pancreatic enzyme therapy
- Improved antibiotic therapy and chest physiotherapy
- Established CF centers that employ multidisciplinary health care teams.3
Stanford Hospital and Clinics, Stanford, California, is physically connected to Lucile Packard Children's Hospital, where many CF patients have "grown up". When the children's hospital developed capacity issues, it became necessary to transfer older pediatric and adult patients to the adult hospital.
Having spent many days with a familiar pediatric health care team, CF patients feared the idea of moving to Stanford Hospital-a place where many believe CF patients "go to die". They felt uprooted from their health care family and wary of staff who might be unfamiliar with their needs.
To us, this situation was an unintended result of improved health care-more exciting than problematic. We realized, however, that with CF patients' increased survival rate came the onset of many adolescent and adult issues, including a preoccupation with self-image and control, self-doubt, fear of death, denial, withdrawal-even infertility and drug and alcohol abuse.4 To successfully work with gravely ill patients experiencing these problems and emotions, we needed strong caregivers with gentle touches.
Getting in the know
A multidisciplinary team that represents respiratory therapy, case management, dietary, pediatrics, rehabilitation, nursing management, and nursing education guides transfers from the children's hospital to the adult unit. Stanford Hospital offers education programs to in-house physicians, respiratory therapy staff, and nursing.
Follow-up education addresses patho-physiology, nutritional components, chest physiotherapy options, mobility needs, and social work aspects, including learning about CF patients' perspectives of their disease. If they meet certain competency requirements, CF patients can participate in a self-medication administration program.
We shared clinical data between the two hospitals by importing the computer system from Lucile Packard Children's Hospital to workstations at Stanford. This enabled the pediatric CF physicians to access lab data, histories, and other information while at the adult unit. In turn, we installed the adult clinical database system on a workstation in the pediatric clinic.
We used open forums and patient satisfaction rounds to gather feedback from CF patients and staff regarding the new arrangement, then developed a plan to meet their expressed needs. Remaining visible and checking in with families helped to foster a teamwork environment.
Our primary goal involves care continuity. We ensure that the same nursing staff members see the same patients on as many subsequent days as possible, which builds trust and helps staff get accustomed to each patient's routine and individual needs.
More than ever, adolescents with various forms of chronic childhood diseases live longer. Nurse managers can help staff on adult units increase their knowledge to care for these individuals, especially CF patients.
In 1994, the average CF patient's length of stay in the pediatric hospital was 11.1 days. In 1999, the average CF patient's length of stay in the adult hospital was 10.5 days. Caregivers who learn CF's intricacies and demands will be best prepared to meet the needs of this growing patient population.
- "Cystic Fibrosis," Microsoft® Encarta® Online Encyclopedia 2001. http://encarta.msn.com© 1997-2000Microsoft Corporation. All Rights Reserved.
- 2. Ibid.
- Tullis, D., and Guyatt, G.: "Quality of Life in Cystic Fibrosis," PharmacoEconomics. 8(1):23-33, 1995.
- Tippi, H.: "Significant Relationships: Nurses Caring for Adolescents with Cystic Fibrosis," Contemporary Nurse. 4(3):123-128, 1995
About the authors
Janice Crosier is Nurse Manager, General Medicine, at Stanford Hospital and Clinics, Stanford, CA. At the time this article was written, Lowell C. Wise was the program's Director of Research.