Jagt-van Kampen Charissa T, Kars Marijke C, Colenbrander Derk A, Bosman Diederik K, Grootenhuis Martha A, Caron Huib N, Schouten-van Meeteren Antoinette Y N
Department of pediatric oncology, Emma Children's Hospital, Academic Medical Centre, Amsterdam, Netherlands.
Department of medical humanities, Julius Center for health sciences and primary care, UMCU, Utrecht, Netherlands.
BMC Palliat Care. 2017 Jan 12;16(1):1. doi: 10.1186/s12904-016-0166-8.
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).
A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents.
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.
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.
病例管理是儿科姑息治疗领域备受关注的一个主题。目前缺乏对这类病例管理内容的详细描述。我们旨在描述针对恶性疾病（MD）和非恶性疾病（NMD）患者，儿科姑息治疗病例管理项目所提供的护理内容、不同学科的利用情况以及使用时间。
进行了一项为期三个月的前瞻性研究，由儿科姑息治疗团队（PPCT）成员在每次与家长接触时填写问卷。
与70名患者（27名MD患者，43名NMD患者）的家长进行了455次接触。所有接触中62%是与专科护士进行的。儿童生活专家、心理学家和社会工作者也经常被咨询，而牧师未被咨询。所有接触的95%发生在工作日上午8点至下午6点之间，下午6点至晚上9点之间的接触数量有限。所有接触中有25%是由PPCT主动发起的，25%是由家长发起的。在这些护理特征方面，MD患者和NMD患者没有差异。心理社会主题被提及的频率最高。MD患者就学业问题更频繁地咨询PPCT，而NMD患者则就社会经济问题进行咨询。
除牧师外，PPCT的所有不同学科都经常被咨询。凭借一个易于联系且积极主动的团队，上午8点至晚上9点的服务时间似乎足以满足患者和家长的需求。对于社会经济主题似乎需要更多的预判。对儿科姑息病例管理的这种认识可为新的PPCT的发展提供指导。
