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 counseling. 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. As the long held concern regarding the negative impact of such close monitoring on patient health was not realized, home monitoring could become a useful methodology for following slowly developing changes in the condition of patients with CF and other chronic diseases.