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PROGRAMS

CF.DOC - A Web-based Interactive Model of Care
By David Bergman, MD; Gail Farmer, MS; & Richard Moss, MD

Overview

CF.Doc is a computer program created to increase access to care for children and adolescents with CF. Currently, at the Lucile Packard Childrens’ Hospital (LPCH) in Palo Alto, CA, USA; CF patients visit the CF clinic every 3 months. CF.Doc was designed to increase the frequency of access through virtual visits, secure messaging and online health education. The program was adapted from a “wellness” program developed by I-Trax Company.

Background

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David Bergman and Gail Farmer

Over the past decade, research in chronic illness has resulted in the development of new, innovative models of care that emphasize the importance of self-management for the patient and family. The aim has been for sustained and active follow-up with care providers and improved coordination of services. The success of these models stems from the use of software packages that provide new ways to access care and to enhance knowledge transfer between patients and providers. This research has demonstrated that when the best aspects of these technologies are interwoven and combined into Interactive Health Care Communication Programs (IHCP), the combination can lead to substantial and critically needed system changes.

Evaluation of the effect of using such programs on young patients with CF has shown that patients experience improvements in quality of life, participate more in their health care, spend less time in ambulatory care visits, make fewer phone calls to providers and experience less hospitalisation. In addition, patients were more involved in decisions about treatment alternatives and were more likely to engage in healthful behaviours.

Even though research literature has documented the importance and effectiveness of such programs to improve the care of young people with chronic illnesses, the programs remain severely under-utilized. A significant challenge remains to close the gap between what we know improves the care of chronically ill children, and what we do. The aim of this report is to document how we can do better and improve CF care by utilizing available technology as follows:

Using Interactive Health Care Communication Programs can:

• Enhance the exchange of information between clinicians and patients

• Improve access to care through the use of non-face to face encounters

• Provide more sustained and active follow-up care

• Promote patient self management

• Improve health status, physiological outcomes and patient satisfaction with health care.


Interactive Health Care Communication Programs can be used to enable patients and families to:

• Improve patient experience with care

• Improve patient quality of life

• Aid patients in decisions about treatment alternatives

• Promote healthful behaviors

• Promote self care

• Manage patient demand for health services

• Acquire personalized evidence-based knowledge

• Build self-management skills


Interactive Health Care Communication Programs can better monitor and modify patient care in consultation with their clinicians and improve efficiency through:

• Decreased time in ambulatory care visits

• Fewer phone calls to providers

• Lower rates of hospitalization


Study

In 2002 the authors designed a research project in order to study the impact of an Interactive Chronic Illness Program designed to be used for people with CF, which was given the name CF.Doc, a program that could:

• Increase access to evidence-based care

• Promote self-management skills

• Allow more intensive and sustained monitoring of key clinical indicators such as Nutritional status

• Improve self-management behaviors

• Detect changes in satisfaction with the quality of the patient experience and satisfaction with health status


Aims and objectives

The primary aims of the research project were two-fold:

1) Firstly to detect a change in nutritional status (defined as changes in weight for age and height for age); and

2) Secondly, to monitor changes in Body Mass Index (BMI) status.

The secondary aims the project were to:

• Count the number of pulmonary flare-ups

• Count the number of self-care behaviors identified

• Measure satisfaction of the patient’s experience in regard to access to care, interaction with provider, utilization of home calls, utilization of unscheduled visits, pulmonary function trends and health-related quality of life


Methods

This project was piloted with a group of 12 adult CF patients between January and July 2003. Comments from the trial group were taken back to the Information Technology department at LPCH as well as I-Trax. The full research project using a software package, CF.Doc program modified according to feedback from the pilot study, took place between March 2004 through June 2005 and involved 67 CF patients who were 21 years of age and younger. Half the group was selected by random means to be the intervention group who were to use the CF.Doc program and the remainder were the control group who received usual care.

The intervention group completed monthly assessments by either the child or the parent and quarterly Quality of Life (QOL) questionnaires. Additionally they had access to the CF.Doc and could keep track of immunizations, height & weight, hospitalisation dates, medications, radiology results and weekly nutrition tips.

Patients assigned to the control group also completed quarterly QOL questionnaires. As they completed the quarterly forms, they received one of four CF Family Education modules designed by Texas Children’s Hospital, Baylor College of Medicine. First quarter topic was Communication, followed by Respiratory, Coping, and Nutrition. This booklet series is designed with one booklet geared for parent education and one for the patient. Depending on the age of the child, there are between 1 and 3 booklets. There are also age-specific booklets designed for ages 3 through adolescence. Both parent and child sets of materials were provided to the control families quarterly, after they completed the research related Quality of Life questionnaires.


Results

Eighty-nine percent of subjects completed the study. Subjects in the intervention group when compared to the control group had significantly more healthy changes 32 vs. 20 they also showed a trend which was not statistically significant towards a greater improvement in nutrition as measured by body mass index (BMI) in subjects with poorest baseline BMI (< 25 percentile).

There were a significantly less phone calls to the MD (11% vs. 23% in the intervention group. Eighty percent of subjects found the CF.Doc program useful or very useful, 56% felt the CF.Doc program was helpful or very helpful in meeting their treatment goals and 51% felt the program was helpful or very helpful in reducing the risk of complications. There was no significant difference in hospitalisation rates.


Conclusions

In our study, children who used the CF.Doc program had increased the number of completed healthy behaviours, a trend towards an increase in BMI, and decreased number of Physician phone calls. The use of such programs has a positive effect on health behaviour and is felt to be helpful in reducing the risk of complications; and may improve health outcomes such as BMI.

This CF.Doc program, could be viewed as an initial step in providing a patient portal for children with chronic illness. The current system is a stand alone, but LPCH is working to create a portal that is integrated with our Electronic Health Record (EHR). Both the physician/staff and the patient/family can enter data onto their own respective sides of the application. The end result is a web-based record that is jointly created and maintained by the patient and their medical staff.

David Bergman, M.D. is an Associate Professor of Pediatrics at Lucile Packard Children’s Hospital and is Board Certified in Pediatrics.

Gail Farmer, M.S. has a 25-year background as Case Manager for CF patients prior to serving as the Research Coordinator for the CF.Doc project.

Richard Moss, M.D. is the Service Chief for Pediatric Pulmonary Medicine/CF and Pediatric Allergy/Asthma/Immunology at LPCH. Dr. Moss is the Director of the CF Program at Stanford and has been instrumental in many pivotal research studies related to CF. He has received the title of “Best Doctors in America” 2001 through 2005.