Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings (SPhAERA)
10.2019 – 09.2022
Background and Rationale:
The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. As a highly complex subfield of palliative care, paediatric palliative care focuses on the support and involvement of the entire family, and on the impact not only at the patient level, but also at the family and health systems level. Ideally, a specialised multiprofessional team fills the complex healthcare needs of children and their families. A consultative care model might be well-suited to address each family’s most important needs. The question, however, of how SPPC is beneficial for whom and under what circumstances remain largely unanswered as validation of innovative care programmes in controlled studies is lacking.
This study’s overall target is to evaluate the effectiveness of SPPC and to report on its potential to improve patient-, family-, health professional-, and healthcare-related outcomes.
The primary objective is to explore how SPPC influences the quality of life (QOL) of caregivers, i.e. parents.
Secondary objectives are to explore how SPPC influences the QOL of patients including their symptom severity and distress as well as the QOL of their siblings and of healthcare professionals not specialised in PPC.
Further objectives are to determine whether the provision of SPPC reduces the utilisation of healthcare resources and direct and indirect health-related costs for families.
As the key goal of palliative care (PC), QOL will be the main outcome of the effectiveness trial within this hybrid study. Since a large proportion of the study population will be young or cognitively impaired, we defined caregiver QOL as this study’s primary outcome. Caregiver QOL at one month after study entry will be analysed as well as all measurements of QOL together.
QOL - assessed on the patient, the patient’s siblings and healthcare professional levels - will be the secondary outcomes of the trial. Other clinical, service, economic and implementation outcomes will include: patient symptom severity and distress, parental grief processes, healthcare resource utilisation, direct and indirect health-related costs, place of death, and introduction of SPPC.
Study design: Multi-centre comparative effectiveness study
Intervention and comparison: All services provided to children/families by a member of the multiprofessional SPPC team at the University Children’s Hospital in Zürich will be considered as study intervention. This includes direct consultation of the patient/family, as well as patient-/family-related consultation of the frontline care team. Bereavement support is considered an integrated part of SPPC and after the death of a child, follow-up bereavement support is routinely offered at the individual or group level as appropriate for parents and siblings. For children/families in the comparison group, routine care, including primary PPC is provided as per established paediatric standards already in place at all study sites.
Medizin, Pflegewissenschaften, Pädiatrie, Andere
Universitäts-Kinderspital Zürich; Universität Basel, Departement Public Health – Pflegewissenschaft
Dr. sc. med. Karin Zimmermann, PD Dr. med. Eva Bergsträsser
Klinik für Kinder und Jugenliche, Kanstonsspital Aarau; Universitäts-Kinderspital beider Basel; Universitätsklinik für Kinderheilkunde, Inselspital Bern
SAMW, SGP, SwissPedNet