Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period

Zernikow, Boris; Szybalski, Katharina; Hübner-Möhler, Bettina; Wager, Julia; Paulussen, Michael; Lassay, Lisa; Jorch, Norbert; Weber, Carola; Schneider, Dominik T.; Janßen, Gisela; Oommen, Prasad T.; Kuhlen, Michaela; Brune, T. H.; Wieland, Regina; Schündeln, Michael M.; Kremens, Bernhard; Längler, Alfred; Prokop, Aram; Kiener, Rita; Niehues, Tim; Rose, Martina; Baumann-Köhler, Margit; Pöppelmann, M.; Thorer, Heike; Irnich, M; Sinha, Kumar Sharad; Wolfe, Joanne; Schmidt, P

doi:10.1177/0269216318818022

Cited by 33 publications

(51 citation statements)

References 38 publications

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“…Of the 42 included studies, 11 examined the impact of specialist paediatric palliative care, 44,48,57,58,62,64,66,70,73,74,88 14 explored factors affecting access 23,43,45,56,65,68,71,75,76,[78][79][80][81][82][83]89 and 17 studies investigated both 46,47,[49][50][51][52][53][54][55][59][60][61]63,67,69,72,77,[84][85][86][87]90 (see Table 1 for study characteristics). Using the MMAT, 25 studies were categorised as quantitative non-randomised, 12 as quantitative descriptive and 5 as qualitative stud...…”

Section: Study Characteristicsmentioning

confidence: 99%

“…The majority of studies were conducted in the United States (n = 28). Others were in the United Kingdom (n = 3), 23,47,76 Canada (n = 3), 50,51,63,72 Germany (n = 3), 57,73,90 France (n = 1), 87 Switzerland (n = 1), 79 Israel (n = 1) 49 and two in multiple countries. 65,71…”

Section: Study Characteristicsmentioning

confidence: 99%

“…Thirty-one studies (all quantitative) examined the impact of and/or characteristics of children receiving specialist palliative care; 24 included a comparator group of children not receiving this, 23,43-51,54-64,78,86-88, 90 1 compared children receiving late and early specialist input, 52,53,84,85 and 6 used a single-group study design. 66,67,69,70,73,74 Of the remaining 11 studies (6 quantitative and 5 qualitative), 10 explored the views of healthcare staff 65,71,72,[75][76][77][79][80][81][82][83]89 and 1 the views of parents and young people.…”

Section: Study Populationsmentioning

confidence: 99%

“…We identified five broad service types from the included studies: hospital-based palliative care teams with referral triggering an initial consultation 46,[50][51][52][53]58,[61][62][63][64]67,69,[73][74][75]77,[82][83][84][85]87,88 (n = 17), hospice services 23,45,47,55,56,59,60,65,86 (n = 8), home-based services 48,57,70,90 (n = 4), integrated oncology services 44,66 (n = 2) and an integrated oncology inpatient unit (n = 1). Three studies referred to palliative care consultation only, 43,54,78 and three a palliative care team, 68,79,81 although it is likely that these were all referring to hospital-based teams.…”

Section: Models Of Deliverymentioning

confidence: 99%

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Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.

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Section: Study Characteristicsmentioning

confidence: 99%

Section: Study Characteristicsmentioning

confidence: 99%

Section: Study Populationsmentioning

confidence: 99%

Section: Models Of Deliverymentioning

confidence: 99%

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Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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“…However, in a repeated cohort study, it was reported that symptom relief remained unchanged even if there were advances in the availability of paediatric palliative care. The study showed that the effect of paediatric palliative care was mainly an improvement in planning the location of death, and more children died at the preferred location 11. A greater understanding of knowledge translation is necessary to evaluate how paediatric palliative care should be facilitated and optimised in healthcare.…”

Section: Introductionmentioning

confidence: 99%

Paediatric palliative care: a systematic review

Nilsson

Öhlén

Hessman

et al. 2019

BMJ Support Palliat Care

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ObjectivesTo review literature relating to evidence, context and facilitation to describe knowledge translation in paediatric palliative care. Paediatric palliative care requires competences including both paediatric specialists as well as services that are developed for this purpose, and there is a need to facilitate paediatric palliative care knowledge translation. Promoting Action on Research Implementation in the Health Services (PARiHS) is a framework for knowledge translation, which highlights the relationships between evidence, context and facilitation. PARiHS framework has been revised and updated in a new version called i-PARiHS.MethodsThe electronic databases AgeLine, CINAHL, The Cochrane Library, PsycINFO, PubMed and Scopus were searched. Papers included were limited to English and Swedish publications and restricted to publications dated between 1993 and August 2019. All types of observational and experimental studies using any research design were included.Results and conclusionsThirty-eight articles were included and there was a common vision about how and when palliative care should be offered to children. The i-PARiHS was used as a lens to describe the knowledge translation in paediatric palliative care. Symptom relief was the most commonly described evidence-based strategy, and the hospital environment was the most commonly described context. Different types of education were the most commonly used strategies to facilitate knowledge translation. The results mainly focused on increasing knowledge of palliative care in paediatric care. To sum up, the results report strategies to achieve knowledge translation of paediatric palliative care, and these can be interpreted as a guideline for how this process can be facilitated.Trial registration numberCRD42018100663.

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Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data

et al. 2021

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IMPORTANCE Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report. OBJECTIVE To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure. DESIGN, SETTING, AND PARTICIPANTS Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children's hospitals located in Akron

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Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period

Cited by 33 publications

References 38 publications

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Paediatric palliative care: a systematic review

Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data

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