Evidence map›Paper›PMID 29304799›Full record

GuidelineBMC palliative care2018

Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients.

Lisa-R Ulrich, Dania Gruber, Michaela Hach, Stefan Boesner, Joerg Haasenritter, Katrin Kuss, Hannah Seipp, Ferdinand M Gerlach, Antje Erler

Open access · goldAbstract readGuideline
In one paragraph

Guideline in BMC palliative care, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
2.5field-weighted citation impact, top 11% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 9 citations in OpenAlex.

  1. Article
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 3 institutions in 1 country.

Lisa-R UlrichInstitute of General Practice, Goethe-University Frankfurt, Frankfurt, Germany. ulrich@allgemeinmedizin.uni-frankfurt.de.
Dania GruberInstitute of General Practice, Goethe-University Frankfurt, Frankfurt, Germany.
Michaela HachProfessional Association of Specialized Outpatient Palliative Care in Hesse, Wiesbaden, Germany.
Stefan BoesnerDepartment of General Practice and Family Medicine, Philipps-University of Marburg, Marburg, Germany.
Joerg HaasenritterDepartment of General Practice and Family Medicine, Philipps-University of Marburg, Marburg, Germany.
Katrin KussDepartment of General Practice and Family Medicine, Philipps-University of Marburg, Marburg, Germany.
Hannah SeippDepartment of General Practice and Family Medicine, Philipps-University of Marburg, Marburg, Germany.
Ferdinand M GerlachInstitute of General Practice, Goethe-University Frankfurt, Frankfurt, Germany.
Antje ErlerInstitute of General Practice, Goethe-University Frankfurt, Frankfurt, Germany.
Goethe University Frankfurt · DEPhilipps University of Marburg · DEInstitut für Palliative Care · DE

Funding

Innovationsfonds (GER) 01VSF16006
6 · The paper itself

Abstract

backgroundIn 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). METHODS/

designThe study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). DISCUSSION: This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients.

trial registrationInternet Portal of the German Clinical Trials Register ( www.germanctr.de , DRKS-ID: DRKS00012431).

Indexed as

Clinical ProtocolsPalliative CarePediatricsAdolescentAdultAmbulatory CareChildFemaleFocus GroupsGermanyHumansMalePractice Guidelines as TopicQualitative ResearchSurveys and QuestionnairesMixed methodsNeeds assessment [MeSH]Palliative care [MeSH]Pediatrics [MeSH]Qualitative research [MeSH]

Identifiers

PMID29304799
PMCPMC5755278
OpenAlexW2781573680

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.