title: Specialized pediatric palliative home care: a prospective evaluation.
abstract: OBJECTIVE
  In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents.
  
  
  METHODS
  Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F).
  
  
  RESULTS
  Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001).
  
  
  CONCLUSIONS
  The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children.
authors.affiliation: 1 Pediatric Palliative Care Service, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University , Munich, Germany .
authors.forename: Gesa
authors.initials: G
authors.lastname: Groh
authors.forename: Gian Domenico
authors.initials: GD
authors.lastname: Borasio
authors.forename: Carla
authors.initials: C
authors.lastname: Nickolay
authors.forename: Hans-Ulrich
authors.initials: HU
authors.lastname: Bender
authors.forename: Irene
authors.initials: I
authors.lastname: von Lüttichau
authors.forename: Monika
authors.initials: M
authors.lastname: Führer
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003258:Consumer Behavior; D005260:Female; D005858:Germany; D007722:Health Knowledge, Attitudes, Practice; D006699:Home Care Services; D006801:Humans; D007223:Infant; D008297:Male; D010166:Palliative Care; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies; D011788:Quality of Life; D013038:Specialization; D011795:Surveys and Questionnaires