104 Chapter 4 Table 1. Characteristics of participants Participants (N = 148) N (% response-rate within discipline or group) Discipline Medical doctor Psychologist Nurse Dietitian Physiotherapist Social worker Occupational therapist Speech therapist 57 (63.3) 39 (52.0) 36 (66.7) 5 (71.4) 4 (100.0) 3 (50.0) 2 (66.7) 2 (100.0) Disease group Diabetes (6 hospitals) Juvenile Idiopathic Arthritis (2 hospitals) Medical psychology (2 hospitals) Sickle cell disease Gender dysphoria Coagulation diseases (4 hospitals) Diagnostic Center Nutritional problems Gastrointestinal diseases Marfan syndrome Neonatology follow-up Spina Bifida Cystic Fibrosis Nephrology (2 hospitals) Epidermolysis Bullosa Surgery follow-up Epilepsy Human Immunodeficiency Virus Congenital hand and arm disorders Home Parenteral Nutrition Metabolic diseases (2 hospitals) Dermatology Neurofibromatosis type 1 Muscle diseases Endocrinology 42 (63.6) 12 (80.0) 10 (52.6) 9 (100.0) 8 (27.6) 7 (77.8) 6 (100.0) 6 (75.0) 5 (100.0) 5 (71.4) 5 (55.6) 4 (100.0) 4 (50.0) 4 (44.4) 4 (36.4) 3 (75.0) 3 (50.0) 2 (100.0) 2 (66.7) 2 (66.7) 2 (40.0) 1 (100.0) 1 (50.0) 1 (33.3) 3. Use of KLIK during the consultation Table 2 gives an overview of the use of KLIK reported by the clinicians. Most clinicians (70.3%) indicated they discuss the KLIK ePROfile (almost) always with patients and/ or parents, 18.2% reported to discuss the KLIK ePROfile sometimes and 11.5% indicated to (almost) never discuss the KLIK ePROfile. Reasons for not discussing the KLIK ePROfile with patients and/or parents, as indicated by clinicians in the comments section, were lack of time, PROMs not completed, forgot to discuss, technical problems, no priority, no problems reported in the KLIK ePROfile, the KLIK ePROfile was discussed by another team member or KLIK was no longer part
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