A prospective study on the characteristics and subjects of pediatric palliative care case management provided by a hospital based palliative care team

Charissa T Jagt – Van Kampen,Martha A Grootenhuis,Marijke C Kars,Derk A Colenbrander,Antoinette Y N Schouten-Van Meeteren,Huib N Caron,Diederik K Bosman

doi:10.1186/s12904-016-0166-8

Charissa T Jagt – Van Kampen, Martha A Grootenhuis + Show 5 more

Open Access

https://doi.org/10.1186/s12904-016-0166-8

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Abstract

BackgroundCase 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).MethodsA three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents.ResultsFour 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.ConclusionsAll 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.

Highlights

Case management is a subject of interest within pediatric palliative care
Support by a pediatric palliative care team (PPCT) can possibly result in fewer hospital admissions [10, 11], increased satisfaction with care [2, 5, 9, 13], better symptom management and quality of life [2, 8,9,10], and it will allow more patients to die at the preferred place [3, 6, 7]
Participants Subject of study were all members of the PPCT, including the specialized nurses, the child life specialists, the psychologist, the social worker and the chaplain

Summary

Introduction

Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. New clinical practice guidelines have been developed and specialized pediatric palliative care teams (PPCTs) offering case management to children with life shortening disease are initiated [2,3,4,5,6,7,8,9,10,11]. An exact definition of case management is still under discussion, it should consist of anticipation of the care needed, and coordination of the multidisciplinary care process. It should be accessible, and include home visits, end-of-life planning, organization of respite care, and bereavement support [12]. No consensus was reached on which disciplines should be part of the multidisciplinary approach, and on the need of 24-hour availability [15]

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