PELICAN: Content evaluation of patient-centered care for children with asthma based on an online tool

Abstract

Background: We assessed the content of an intervention which integrates individual goals in outpatient clinic asthma management (based on self management principles) of children 6-12 years of age.

Methods: This is a content evaluation study and was part of a randomized controlled multicenter trial with 9 months follow-up in five Dutch outpatient asthma clinics among children with asthma aged 6-12 years. Information on children's individual problems and their level of impairment (as indicated by the Pelican instrument), asthma management goals, and actions (as indicated by written action plans) was collected. Satisfaction of parents, children, and nurses were assessed with questionnaires and analyzed with descriptive statistics.

Results: Most frequently identified problems by children (n = 42) were "cough," "cigarette smoke," and "shortness of breath." Eighty-two percent of items that were selected by children showed room for improvement. About 2-7 actions were formulated and children had an active role in more than 76% of the actions. "Using rescue medication prior to activities/triggers," and "talk to others about your asthma" were most frequently recommended. Children thought the Pelican instrument was easy (95%) and fun (65%) and both parents and nurses were positive about the incorporation of the program in asthma management. Following barriers were found: (1) only 25% of goals was formulated according to SMART principles; (2) traditional management aspects (such as medication use) are often treated instead of individual problems of children.

Conclusion: Implementation of patient-centered care based on the Pelican instrument is recommended in specialized care, although more extensive training of nurses in PCC will improve the successful execution of the evaluated treatment. Pediatr Pulmonol. 2016;51:993-1003. © 2016 Wiley Periodicals, Inc.

Trial registration: ClinicalTrials.gov NCT01109745.

Keywords: asthma; children; intervention; patient-centered care.