131 Patient’s and parents’ perspective on PROM implementation Table 1. Sociodemographic characteristics of focus group and questionnaire participants Focus groups Questionnaire Patients N M Range N M Range KLIK user since (years) 8 3.2 1.1-6.1 31 5.2 1.0-8.2 Age 8 15.3 13.1-18.8 31 15.7 12.4 -19.2 % % Gender (female) 6 75.0 15 48.4 Chronic health condition Juvenile idiopathic arthritis 2 25.0 7 22.6 Cystic Fibrosis 2 25.0 1 3.2 Cancer 2 25.0 0 0 Gastrointestinal diseases 1 12.5 4 12.9 Home parenteral nutrition 1 12.5 0 0 Sickle cell disease 0 0 4 12.9 Other* 0 0 15 48.4 Parents N M Range N M Range KLIK user since (years) 17 2.8 0.8-6.1 130 3.2 0.3 - 8.1 Age (of child in KLIK) 17 10.4 2.1-16.9 130 9.3 0.9 – 19.1 % % Chronic health condition (child) Cancer 6 35.3 0 0 Juvenile idiopathic arthritis 2 11.8 13 10.0 Hemophilia 2 11.7 4 3.1 Home parenteral nutrition 2 11.7 3 2.3 Gastrointestinal diseases 1 5.9 20 15.4 Neonatology follow up 0 0 28 21.5 Other* 4 23.5 62 47.7 *Only most common conditions groups (>10% in one of the study groups) are reported, other: cleft lip, endocrinology, nephrology, HIV, dermatology, craniofacial abnormalities, spherocytosis, cystic fibrosis, lysosomal storage disorders, intensive care follow-up, Marfan syndrome, feeding disorders, phenylketonuria, and muscular disorders. In addition, completion time was rated by some as good and by others as timeconsuming, and the KLIK ePROfile is always discussed by the clinician according to some patients, but not enough by others. Finally, KLIK helps only some patients in preparing for the consultation, and patients were ambiguous about ease of use of KLIK. The lack of motivation for completing the KLIK PROMs was only mentioned as a negative experience by some patients. 5
RkJQdWJsaXNoZXIy MTk4NDMw