The impact of home monitoring and daily diary recording on patient status in cystic fibrosis.

An experimental home monitoring system for assessing the progress and planning changes in the care of patients with cystic fibrosis (CF) has been implemented at the University of Minnesota Cystic Fibrosis Center. One group of patients and families did daily recording of physical measurements and symptoms, and sent the diary to the data coordinating center weekly for analysis. The remaining patients were not part of the home monitoring program. Twenty-five patients were randomly selected from the home monitoring group. They were compared to an age- and sex-matched control group not doing home monitoring to ascertain if home self-measurement and daily diary recording, in the absence of any therapeutic intervention, produced any change in physical or psychological status, pulmonary function, or growth over a 4-year study period. Subjects ranged in age from 6 to 43 years. Clinical status was measured by the National Institutes of Health cystic fibrosis scoring system. Pulmonary function was assessed as percent of predicted forced vital capacity and percent of predicted forced expiratory volume in 1 sec (FEV1). Growth was analyzed as percent of predicted weight based on age-, sex-, and height-dependent equations. Psychological status was determined by self-assessment and referral for conseling. Only percent predicted FEV1 in the control group declined significantly. There were no statistically significant changes in any other measures either within or between diary and nondiary groups over the 4-year period.(ABSTRACT TRUNCATED AT 250 WORDS)

Implementation of a home-based program for early detection of clinical deterioration in cystic fibrosis.

A statistical decision-making system, based on daily self measurements obtained at home, has been developed that will predict the clinical status of a patient with cystic fibrosis (CF). The data for the study were collected from patients randomly selected from those served by the University of Minnesota CF Center. Participants recorded four daily measurements (weight, vital capacity, breathing rate, and resting pulse) and one weekly measurement (height) and returned completed diaries to the coordinating center each week. The goal of the rule was to determine whether each patient's clinical status was deteriorating, remaining stable, or improving at the time of the most recent set of weekly measurements. This early detection and intervention criterion (EDIC) is being used in the clinical setting to aid in the management of patients with cystic fibrosis. The computer hardware and software, particularly the relational database, have provided an efficient basis for the continued use of EDIC.

A rule for the early detection of chronic changes in cystic fibrosis patient status.

A statistical decision-making system has been developed which will predict the clinical status of a patient with cystic fibrosis based on daily self measurements obtained at home. The data for the study were collected from CF patients within 7-12 years of age. Thirty-two participants recorded four daily measurements (weight, vital capacity, breathing rate, and resting pulse) and one weekly measurement (height). In addition to the 4 daily measured values, the clinical status of each patient at his/her most recent previous clinic visit was used as a predictor variable. The measured values were used as the basis for the development of a discriminant rule. The goal of the rule was to determine whether each patient's clinical status was deteriorating, stable, or improving at the time of the most recent set of weekly measurements. Three types of analysis were performed: linear discriminant analysis, quadratic discriminant analysis, and nearest neighbor. Quadratic discriminant analysis provided the best discrimination due to the differences in the covariance matrices among the populations. The rule was able to correctly classify 77% of the 103 cases in the learning set. To further evaluate the rule, both a weighted classification percentage and weighted kappa statistic were calculated for the rule. Bootstrapping was used to predict the performance of the rule on the population with results of 77% correctly classified overall.

Feasibility and compliance studies of a home measurement monitoring program for cystic fibrosis.

A home measurement monitoring system has been developed for assessing progress and planning changes in care for patients with cystic fibrosis. Daily diary recording of specified measurements, quantitative symptom data, and free text are to be used for early detection of deteriorating trends before serious complications develop. Daily measurements made at home are lung capacity, body weight, breathing rate, and pulse. The program has been in place for the past two years, and has maintained a 75-80% consistent diary response rate among the 111 patients initially committed to the program. Measurements are easy to perform, equipment design is simple and rugged, and data handling routines designed for the program using the INSIGHT clinical data base system perform satisfactorily. Checking for data entry errors and validity checks of home measurements are a regular part of the data handling activity. Patient acceptance and long-term compliance in this program agrees very favorably with reports of other diary programs in chronic disease. Diary compliance was significantly greater among younger patients and those who lived long distances from the hospital. This study has demonstrated that home monitoring is a feasible program for patients with cystic fibrosis. It presents the possibility of detecting adverse health trends earlier than is now practical, so that patients can be treated before serious complications develop, thereby preventing the large fluctuations in health status that often accompany CF.