title: Optimization of home treatment in haemophilia: effects of transmural support by a haemophilia nurse on adherence and quality of life.
abstract: BACKGROUND
  Transmural support by a haemophilia nurse may improve treatment and may empower parents and patients.
  
  
  OBJECTIVE
  To measure the effect of structured home visits by a haemophilia nurse in (parents of) patient on aspects of prophylactic home treatment.
  
  
  METHODS
  A multicentre intervention study in two paediatric haemophilia treatment centres was performed. Primary outcome measures were: adherence to prescribed treatment, health-related quality of life and behavioural scores. Secondary outcome measures were: total clotting factor consumption, self-efficacy and number of joint bleeds.
  
  
  RESULTS
  Over a period of 22 months (median, IQR 21-23), four to seven home visits in 46 patients (mean age 9.4 ± 4.2 years) were made. No difference in adherence to prescribed treatment was seen after the home visits when compared to baseline measurements. Both the Child Health Questionnaire (CHQ) scales on 'Role functioning - Emotional/Behavioural' (P = 0.02, d = 0.53) and 'Parental Time Impact' (P = 0.04, d = 0.33) were reduced after intervention. The disease-specific Haemo-QoL questionnaire showed improvement in domains: 'Family' (P = 0.04, d = -0.14), 'Friends' (P = 0.03, d = -0.29) and 'Perceived support' (P = 0.03, d = -0.37). Significant improvement was observed with regard to domain 'Communication' of the VERITAS-Pro scale (P = 0.03, d = -0.28).
  
  
  CONCLUSIONS
  After a period of transmural care by a haemophilia nurse, significant but small positive effects were demonstrated with regard to communication and increase of perceived support between parents and haemophilia treatment centre. No improvement was observed in other outcome measures.
authors: Department of Paediatric Haematology, Erasmus University Medical Centre - Sophia Children's Hospital, Rotterdam, The Netherlands.
authors: J
authors: J
authors: Lock
authors: Department of Public Health, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors: H
authors: H
authors: Raat
authors: Department of Paediatric Haematology, Emma Children's Hospital-Academic Medical Centre, Amsterdam, The Netherlands.
authors: M
authors: M
authors: Peters
authors: Department of Paediatric Haematology, Erasmus University Medical Centre - Sophia Children's Hospital, Rotterdam, The Netherlands.
authors: M
authors: M
authors: Scholten
authors: Department of Paediatric Haematology, Emma Children's Hospital-Academic Medical Centre, Amsterdam, The Netherlands.
authors: M
authors: M
authors: Beijlevelt
authors: Department of General Paediatrics, Erasmus University Medical Centre - Sophia Children's Hospital, Rotterdam, The Netherlands.
authors: R
authors: R
authors: Oostenbrink
authors: Department of Haematology, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors: F W G
authors: FW
authors: Leebeek
authors: Department of General Paediatrics, Erasmus University Medical Centre - Sophia Children's Hospital, Rotterdam, The Netherlands.
authors: H A
authors: HA
authors: Moll
authors: Department of Paediatric Haematology, Erasmus University Medical Centre - Sophia Children's Hospital, Rotterdam, The Netherlands.
authors: M H
authors: MH
authors: Cnossen
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005260:Female; D006467:Hemophilia A / Q000628:therapy*; D006801:Humans; D007223:Infant; D008297:Male; D009726:Nurses; D010349:Patient Compliance; D011788:Quality of Life; D020377:Self Efficacy; D011795:Surveys and Questionnaires
keywords: adherence; children; haemophilia; home treatment; quality of life; self-efficacy