Do Nottingham Health Profile scores change over time in cystic fibrosis?

We have previously shown that the Nottingham Health Profile (NHP) shows good correlation with physiological scores in an adult cystic fibrosis (CF) population when assessing health status (HS). The aim of this study was to determine whether the NHP can detect change in HS over time. Patients attending an adult CF clinic were studied at the time of their 'annual review' appointment. HS was assessed by the NHP and an 'in house' CF-specific score was used. FEV1% predicted, FVC% predicted, FEV1/FVC ratio, and body mass index (BMI) were calculated. The patients were then studied at subsequent annual review appointments. Change over time was calculated for each parameter and the relationship between change in HS and change in physiological parameters was examined using Spearman's rank correlation. Initial (t1), NHP scores were obtained from 204 patients, median age 26 years (range 16-56 years). Follow-up scores were obtained from 152 patients (t2). The mean rate of change in FEV1 was -8.6 (261) ml yr-1 or -0.2 (6.9)% predicted yr-1. The only dimension of the NHP which showed a significant change over time was emotion, which showed a small improvement in score (score at t1 = 11.3, score at t2 = 8.1, P = 0.02). There was a significant deterioration in the CF-specific total score (t1 = 4.4, t2 = 4.7, P = 0.008). There were no significant correlations between change in physiology and change in NHP scores. There was no overall difference in change in NHP scores between the patients whose FEV1 declined at > 4% predicted yr-1 and those who did not. In conclusion, although the NHP correlates well with one-off physiological parameters, there is poor correlation between change in NHP scores and change in physiological parameters over time.