Perceptions of value of routine care among patients with cystic fibrosis and their families

Terri L Byczkowski, Uma R Kotagal, Maria T Britto, Robert W Wilmott
Pediatric Pulmonology 2004, 37 (3): 210-6
Routine quarterly visits are an integral part of effective disease management for patients with cystic fibrosis (CF), regardless of the patient's age. The objective of this study was to explore the relationship between perceptions of the value of routine visits and perceived overall quality of care. The population in this study consisted of 194 patients at a single CF center. Telephone interviews were completed with 162 parents of children or adult patients (response rate, 84%) in May-June 2000. Among other satisfaction-related questions, respondents were asked to rate: 1) overall quality of care, 2) importance of routine clinic visits in providing good preventative care, and 3) helpfulness of routine clinic visits in providing knowledge for CF care. They were also asked open-ended questions concerning the reasons for their ratings. Perceived helpfulness and importance of routine visits were negatively associated with patient age and positively associated with perceived overall quality of care, especially for parents of teenage patients. The most common reason for low importance ratings was that the patient's health is perceived to be good, making routine clinic visits unnecessary. The most common reasons for low helpfulness ratings were that the visits are too repetitive or routine, and the family learns nothing new from them. In conclusion, tailoring routine visits to respond to different age-based needs and making routine visits less repetitive may add value to routine visits, which could result in increased perceived overall quality of care, especially for parents of teenage patients.


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