Chronic Disease Management: Cystic Fibrosis
Cystic Fibrosis Program
The management of the chronic disease of cystic fibrosis is being addressed in Stanford Family Medicine by the Cystic Fibrosis Quality of Life Program. It was started through the compassion and concern of Tom and Julie Judge, and their friends, for cystic fibrosis patients, family members, and their professional caregivers. Upon witnessing the disease lead to the death of their son Peter Judge, they gave the Director and Program Officer of the Center for Education in Family & Community Medicine a small private grant to be used for improving the quality of life of the CF Community. This seed funding launched the Cystic Fibrosis Quality of Life Program: A Living Legacy of Peter Judge (CFQoLP) in August of 2005. It has provided support for a special Adult CF Social Worker program at Stanford that assists patients needing help to get to treatment, funded an organizational retreat for the Stanford Cystic Fibrosis Medical Units, and trained therapists to provide support for the unique needs of the Cystic Fibrosis Community.
Focus groups and interviews of CF medical professionals, patients and community members indicated that the most valuable and most needed program was one to help all members of the CF Community manage the psychological, social and spiritual concerns associated with the chronic and fatal disease of CF. The CF Community is defined as including patients, family care givers and other family members, and the professional healthcare providers who repeatedly experience the impact of the disease through multiple patients and their families. This support was identified as being a particularly strong need for the growing number of adult CF patients.
With that clear statement from the CF Community, Cystic Fibrosis Research, Inc.,(CFRI), the Institute of Transpersonal Psychology (ITP), and the Stanford Center for Education in Family & Community Medicine (CEFCM) signed a memorandum of understanding in August 2007 to move forward with developing a support and counseling program. The support and counseling was provided at ITP’s counseling center with guidance and expertise from CFRI, and overall guidance and financial support from CEFCM and the Cystic Fibrosis Quality of Life Program. The Community Center for Health & Wellness (CCHW), the counseling center at ITP, has now completed a second year of training for interns to support the specialized needs of the CF Community.
The members of the collaborative realized that the biggest value of this program is in its groundbreaking integration of support and counseling as an addition to biomedicine. It is believed that helping CF patients and other Community members manage all the ramifications of the disease will help provide for the best quality of life possible. With that in mind, CCHW and CEFCM are also working together to create easy to read information pages with supporting references, that demonstrate the connections between psychological, social and spiritual well-being, and physical health. The one page papers are listed below as a resource for anyone who finds them useful.
There is a strong connection with the Stanford Hospitals’ Cystic Fibrosis Units, through their support and consultation in starting the program, and proximity to CEFCM, CFRI and ITP. It is a valued partnership. The collaborative partners also want to reach out to other CF Centers in order to develop a more universally applicable program. But there is a restriction in regards to one part of the program in that licensing and other legal regulations restrict the support and counseling provided by the CCHW to just the state of California.
As the program grows, it hopes and expects to stimulate research, conference presentations and published peer review journal articles regarding the support and management of the psychological, social and spiritual aspects of the CF Community, and their relationship to patients’ overall health and quality of life. It is hoped that the protocol developed will be applicable to other chronic illnesses with adjustments for the special conditions of each disease.Resources:
Cystic Fibrosis Research, Inc (CFRI)
Explanation Letter & Organizational Links
Brief Guide to Anxiety
Brief Guide to Depression
Medication for Depression and Anxiety
Issues for Adolescents with CF
Spirituality, Religion and Well Being
Exercise and Managing CF
Helping Families Cope
Living with Chronic Sorrow and Grief
