Abstract:
OBJECTIVE:Patient education in children with rare chronic diseases like children's interstitial lung disease (chILD) remains a challenge. AIMS:To develop and evaluate a component-based educational program for individual counselling and to improve patients' and caregivers' self-efficacy and treatment satisfaction. Furthermore, to create chILD-specific educational material and assess physicians' satisfaction with the intervention as well as patients' health-related quality of life (HrQoL). METHODS:The study was conducted in two German centers for pediatric pulmonology, as a single-group intervention with pre-post-follow-up design. RESULTS:Participants (N = 107, age: M = 7.67, SD = 5.90) showed significant improvement of self-efficacy (self-report: t = 2.89, p < 0.01; proxy-report: t = 3.03, p < 0.01), and satisfaction (patients: t = 3.56, p = 0.001; parents t = 6.38, p < 0.001) with the medical consultations. There were no pre-post differences in HrQoL. Participants were highly satisfied with the material and the physicians with the program. CONCLUSIONS:The chILD education-program is a promising strategy to improve patients' and their parents' self-efficacy and treatment-satisfaction. Specific effects of the intervention need to be determined in a randomized controlled trial. PRACTICE IMPLICATION:Healthcare providers managing pediatric patients with chILD, may choose to use a patient education-program specifically tailored to the needs of chILD patients and their families, such as the program described here, which is the first of its kind.
journal_name
Patient Educ Counsjournal_title
Patient education and counselingauthors
Niemitz M,Schrader M,Carlens J,Hengst M,Eismann C,Goldbeck L,Griese M,Schwerk Ndoi
10.1016/j.pec.2019.01.016subject
Has Abstractpub_date
2019-06-01 00:00:00pages
1131-1139issue
6eissn
0738-3991issn
1873-5134pii
S0738-3991(19)30028-Xjournal_volume
102pub_type
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