Quality of life and healthcare utilisation in cystic fibrosis: a multicentre study

Abstract

The aim of our study was to discover the health status and healthcare utilisation associated with pulmonary exacerbations in cystic fibrosis (CF) and chronic Pseudomonas aeruginosa infection.Patients with CF from five UK CF centres attended two visits, 8-12 weeks apart. They were classified at visit 1 as being in one of the three health states: no current pulmonary exacerbation; ''mild'' (no hospitalisation) pulmonary exacerbation; and ''severe'' (hospitalisation) pulmonary exacerbation. All patients completed the Cystic Fibrosis Questionnaire-Revised (CFQ-R) and EuroQol (EQ-5D) and a clinical form, and forced expiratory volume in 1 s (FEV1) was measured at visits 1 and 2. Annual healthcare utilisation data were collected.94 patients of mean¡SD age 28.5¡8.2 yrs and FEV1 58.7¡26.8% were recruited. 60 patients had no pulmonary exacerbation, 15 had a mild and 19 had a severe pulmonary exacerbation at visit 1. EQ-5D and CFQ-R data showed that the worse the exacerbation, the poorer the healthrelated quality of life (HRQoL). There were strong relationships between the CFQ-R and EQ-5D domain scores. The mean rate of pulmonary exacerbations per patient per year was 3.6 (1.5 in hospital and 2.2 at home). The mean length of stay per hospital pulmonary exacerbation was 9 days.As exacerbation status worsens, patients experience worse HRQoL. There is a significant healthcare burden associated with treatment of pulmonary exacerbation and long-term prophylaxis.

Indicators of pulmonary exacerbation in cystic fibrosis: A Delphi survey of patients and health professionals

“…PEXs are associated with a more rapid decline in FEV 1 , which results in a further decline in overall wellbeing [7,8]. Health related quality of life (HRQoL) worsens during PEX and more severe exacerbations have a greater negative impact on HRQoL [1,8]. Most people with CF die of respiratory failure which has typically been induced by a PEX [9][10][11].…”

“…Pulmonary exacerbations (PEXs) in cystic fibrosis (CF) are associated with disease progression, increased morbidity, mortality, and substantial healthcare costs [1][2][3][4]. PEXs are experienced by a large proportion of patients with CF.…”

Economic Evaluation of Tobramycin Inhalation Powder for the Treatment of Chronic Pulmonary Pseudomonas aeruginosa Infection in Patients with Cystic Fibrosis

“…To further enhance the utility and generalisability of this analysis, two additional scenarios were evaluated: high adherence to both TIP and TIS and high adherence to TIP with medium adherence to TIS. For high adherence to TIP and medium adherence to TIS, the rate of hospitalisation from Briesacher et al [16] was used to calculate the rate of pulmonary exacerbations for TIS based on the rate of exacerbations for high adherence from Bradley et al [28]. …”

“…Based upon severity, pulmonary exacerbations were classified into two categories, mild (no hospitalisation) and severe (hospitalisation) exacerbations [28]. The rates of severe exacerbations per patient per year based on FEV 1 % predicted (<40, 40–70, >70%) were obtained from an observational study [28].…”

“…The rates of severe exacerbations per patient per year based on FEV 1 % predicted (<40, 40–70, >70%) were obtained from an observational study [28]. These rates were then converted to probabilities of exacerbations (0, 1, 2, 3, and 4) per patient in 6 months for TIP.…”