title: A prospective study on the characteristics and subjects of pediatric palliative care case management provided by a hospital based palliative care team.
abstract: BACKGROUND
  Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD).
  
  
  METHODS
  A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents.
  
  
  RESULTS
  Four hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues.
  
  
  CONCLUSIONS
  All different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient's and parent's needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT.
authors.affiliation: Department of pediatric oncology, Emma Children's Hospital, Academic Medical Centre, Amsterdam, Netherlands. c.t.jagt@amc.nl.
authors.forename: Charissa T
authors.initials: CT
authors.lastname: Jagt-van Kampen
authors.affiliation: Department of medical humanities, Julius Center for health sciences and primary care, UMCU, Utrecht, Netherlands.
authors.forename: Marijke C
authors.initials: MC
authors.lastname: Kars
authors.affiliation: Department of pediatrics, Emma Children's Hospital, Academic Medical Centre, Amsterdam, Netherlands.
authors.forename: Derk A
authors.initials: DA
authors.lastname: Colenbrander
authors.affiliation: Department of pediatrics, Emma Children's Hospital, Academic Medical Centre, Amsterdam, Netherlands.
authors.forename: Diederik K
authors.initials: DK
authors.lastname: Bosman
authors.affiliation: Psychosocial Department, Emma Children's Hospital, Academic Medical Centre, Amsterdam, Netherlands.
authors.forename: Martha A
authors.initials: MA
authors.lastname: Grootenhuis
authors.affiliation: Department of pediatric oncology, Emma Children's Hospital, Academic Medical Centre, Amsterdam, Netherlands.
authors.forename: Huib N
authors.initials: HN
authors.lastname: Caron
authors.affiliation: Department of pediatric oncology, Emma Children's Hospital, Academic Medical Centre, Amsterdam, Netherlands.
authors.forename: Antoinette Y N
authors.initials: AY
authors.lastname: Schouten-van Meeteren
mesh_terms: D000293:Adolescent; D019090:Case Management / Q000706:statistics & numerical data; D002648:Child; D000067576:Child Health / Q000706:statistics & numerical data; D002675:Child, Preschool; D006760:Hospitalization / Q000706:statistics & numerical data; D006801:Humans; D009426:Netherlands; D010166:Palliative Care / Q000706:statistics & numerical data*; D010290:Parents; D010347:Patient Care Planning; D010348:Patient Care Team / Q000706:statistics & numerical data; D011368:Professional-Family Relations; D011446:Prospective Studies; D012944:Social Support; D013997:Time Factors; D055815:Young Adult
keywords: Anticipated care planning; Case management; Pediatric palliative care