Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol
Abstract Background The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex healthcare needs of children and their families....
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-11-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-022-01089-x |
| _version_ | 1827982339849846784 |
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| author | Karin Zimmermann Michael Simon Katrin Scheinemann Eva Maria Tinner Oehler Michèle Widler Simone Keller Günther Fink Stefan Mitterer Anne-Kathrin Gerber Stefanie von Felten Eva Bergstraesser |
| author_facet | Karin Zimmermann Michael Simon Katrin Scheinemann Eva Maria Tinner Oehler Michèle Widler Simone Keller Günther Fink Stefan Mitterer Anne-Kathrin Gerber Stefanie von Felten Eva Bergstraesser |
| author_sort | Karin Zimmermann |
| collection | DOAJ |
| description | Abstract Background The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex healthcare needs of children and their families. The questions of, how SPPC is beneficial, for whom, and under what circumstances, remain largely unanswered in the current literature. This study’s overall target is to evaluate the effectiveness of a SPPC programme in Switzerland with respect to its potential to improve patient-, family-, health professional-, and healthcare-related outcomes. Methods This comparative effectiveness study applies a quasi-experimental design exploring the effectiveness of SPPC as a complex intervention at one treatment site in comparison with routine care provided in a generalised PPC environment at three comparison sites. As the key goal of palliative care, quality of life - assessed at the level of the patient-, the family- and the healthcare professional - will be the main outcome of this comparative effectiveness research. Other clinical, service, and economic outcomes will include patient symptom severity and distress, parental grief processes, healthcare resource utilisation and costs, direct and indirect health-related expenditure, place of death, and introduction of SPPC. Data will be mainly collected through questionnaire surveys and chart analysis. Discussion The need for SPPC has been demonstrated through numerous epidemiological and observational studies. However, in a healthcare environment focused on curative treatment and struggling with limited resources, the lack of evidence contributes to a lack of acceptance and financing of SPPC which is a major barrier against its sustainability. This study will contribute to current knowledge by reporting individual and child level outcomes at the family level and by collecting detailed contextual information on healthcare provision. We hope that the results of this study can help guiding the expansion and sustainability of SPPC and improve the quality of care for children with life-limiting conditions and their families internationally. Trial registration Registered prospectively on ClinicalTrials.gov on January 22, 2020. NCT04236180 Protocol version Amendment 2, March 01, 2021. |
| first_indexed | 2024-04-09T22:33:13Z |
| format | Article |
| id | doaj.art-bfea967df7934551b413876bf747cb82 |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-04-09T22:33:13Z |
| publishDate | 2022-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-bfea967df7934551b413876bf747cb822023-03-22T12:41:04ZengBMCBMC Palliative Care1472-684X2022-11-0121111110.1186/s12904-022-01089-xSpecialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocolKarin Zimmermann0Michael Simon1Katrin Scheinemann2Eva Maria Tinner Oehler3Michèle Widler4Simone Keller5Günther Fink6Stefan Mitterer7Anne-Kathrin Gerber8Stefanie von Felten9Eva Bergstraesser10Paediatric Palliative Care and Children’s Research Center CRC, University Children’s Hospital ZurichDepartment Public Health (DPH), Nursing Science, University of BaselDivision of Pediatric Oncology – Hematology and Palliative Care, Kinderspital, Kantonsspital Aarau AGDivision of Pediatric Heamtology and Oncology, Paediatric Palliative Care, Children’s Hospital, Inselspital, Universitätsspital BernPaediatric Palliative Care, Children’s Hospital BaselPaediatric Palliative Care, Children’s Hospital, Inselspital, Universitätsspital BernDepartment of Epidemiology and Public Health, Swiss Tropical and Public Health InstituteDepartment Public Health (DPH), Nursing Science, University of BaselDepartment Public Health (DPH), Nursing Science, University of BaselClinical Trial Unit, Department of Clinical Research, University of BaselPaediatric Palliative Care and Children’s Research Center CRC, University Children’s Hospital ZurichAbstract Background The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex healthcare needs of children and their families. The questions of, how SPPC is beneficial, for whom, and under what circumstances, remain largely unanswered in the current literature. This study’s overall target is to evaluate the effectiveness of a SPPC programme in Switzerland with respect to its potential to improve patient-, family-, health professional-, and healthcare-related outcomes. Methods This comparative effectiveness study applies a quasi-experimental design exploring the effectiveness of SPPC as a complex intervention at one treatment site in comparison with routine care provided in a generalised PPC environment at three comparison sites. As the key goal of palliative care, quality of life - assessed at the level of the patient-, the family- and the healthcare professional - will be the main outcome of this comparative effectiveness research. Other clinical, service, and economic outcomes will include patient symptom severity and distress, parental grief processes, healthcare resource utilisation and costs, direct and indirect health-related expenditure, place of death, and introduction of SPPC. Data will be mainly collected through questionnaire surveys and chart analysis. Discussion The need for SPPC has been demonstrated through numerous epidemiological and observational studies. However, in a healthcare environment focused on curative treatment and struggling with limited resources, the lack of evidence contributes to a lack of acceptance and financing of SPPC which is a major barrier against its sustainability. This study will contribute to current knowledge by reporting individual and child level outcomes at the family level and by collecting detailed contextual information on healthcare provision. We hope that the results of this study can help guiding the expansion and sustainability of SPPC and improve the quality of care for children with life-limiting conditions and their families internationally. Trial registration Registered prospectively on ClinicalTrials.gov on January 22, 2020. NCT04236180 Protocol version Amendment 2, March 01, 2021.https://doi.org/10.1186/s12904-022-01089-xPalliative carePediatricsEffectiveness researchClinical trialsComplex interventionStudy protocol |
| spellingShingle | Karin Zimmermann Michael Simon Katrin Scheinemann Eva Maria Tinner Oehler Michèle Widler Simone Keller Günther Fink Stefan Mitterer Anne-Kathrin Gerber Stefanie von Felten Eva Bergstraesser Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol BMC Palliative Care Palliative care Pediatrics Effectiveness research Clinical trials Complex intervention Study protocol |
| title | Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol |
| title_full | Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol |
| title_fullStr | Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol |
| title_full_unstemmed | Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol |
| title_short | Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol |
| title_sort | specialised paediatric palliative care assessing family healthcare professionals and health system outcomes in a multi site context of various care settings sphaera study protocol |
| topic | Palliative care Pediatrics Effectiveness research Clinical trials Complex intervention Study protocol |
| url | https://doi.org/10.1186/s12904-022-01089-x |
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