Work-related quality of life in professionals involved in pediatric palliative care: a repeated cross-sectional comparative effectiveness study.

Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have articulated their need for support from specialized PPC (SPPC) teams. Objectives: This study had two objectives: (1) to evaluate whether the availability of a SPPC team impacted the work-related QoL of professionals not specialized in PPC; and (2) to explore the work-related QoL of professionals working in PPC without specialized training. Design: Repeated cross-sectional comparative effectiveness design. Methods: One hospital with an established SPPC program and affiliated institutions provided the intervention group (IG). Three hospitals and affiliated institutions where generalist PPC was offered provided the comparison group (CG). Data were collected by paper-pencil questionnaire in 2021 and 2022. The Professional Quality of Life (ProQOL 5) questionnaire was used to assess work-related QoL, yielding separate scores for burnout (BO), secondary traumatic stress (STS) and compassion satisfaction (CS). A descriptive statistical analysis was performed and general estimation equations were modelled. To increase the comparability of the IG and CG, participants were matched by propensity scores. Results: The 301 participating non-PPC-specialized professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. However, none of these scores (BO: p = 0.36; STS: p = 0.20; CS: p = 0.65) correlated significantly with support from an SPPC team. Compared to nurses, physicians showed higher levels of BO (1.70; p = 0.02) and STS (2.69; p ⩽ 0.001). Conclusion: Although the study sample's overall work-related QoL was satisfactory, it showed a considerable proportion of moderate BO and STS, as well as moderate CS. To provide tailored support to professionals working in PPC, evidence regarding key SPPC support elements and their effectiveness is needed. Trial registration: ClinicalTrials.gov ID, NCT04236180.

Work-related quality of life in professionals involved in pediatric palliative care - Why was this study done? Caring for children suffering from life-limiting conditions and their families impacts professionals' work-related Quality of Life (QoL). Professionals without specific training often provide pediatric palliative care (PPC) to children and their families. - What did the researchers do? We aimed to determine whether the work-related the QoL of professionals without specialised PPC training would be positively influenced when they were supported by PPC specialists. We also wanted to explore what person-specific factors might correspond with higher or lower work-related QoL. Work-related QoL was analysed in relation to burnout (BO), secondary traumatic stress (STS), and compassion satisfaction (CS). These variables' levels were assessed with a questionnaire survey in 2021 and 2022. - What did the researchers find? The 301 participating professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. There was no substantial difference in work-related QoL in the professionals supported by PPC specialists compared to those who did not receive specialist support. Physicians showed higher levels of BO and STS than nurses. - What do the findings mean? Although the studied professionals' overall work-related QoL was satisfactory, there is a considerable proportion of moderate BO and STS scores in professionals working with children suffering from life-limiting conditions. Further research should explore the specific needs of professionals not specialised in PPC.

The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities.

BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce. AIMS: The present study's first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably. METHODS:  A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC. RESULTS: Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 priorities. The highest level of consensus (>90%) was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients. CONCLUSION: Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.

Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol.

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.

Measuring Financial Burden in Families of Children Living With Life-Limiting Conditions: A Scoping Review of Cost Indicators and Outcome Measures.

OBJECTIVES: This study aimed to provide a comprehensive overview of cost indicators and outcome measures used to measure financial burden in families of children with life-limiting conditions. METHODS: A scoping review methodology was used to map the existing literature and provide an overview of available cost indicators and outcome measures. Key medical, economic, and scientific databases were systematically searched to identify relevant articles published in 2000 or later. RESULTS: The database search yielded 7194 records, including 30 articles eligible for final inclusion. Retrieved cost indicators and outcome measures fell into 3 broad categories: direct costs, indirect costs, and financial support. No study comprehensively assessed all 3 categories. Cost indicators used to measure direct costs were grouped into 5 medical and 11 nonmedical out-of-pocket expenses categories, of which 5 were commonly assessed (ie, treatment and diagnostics, travel and transport, accommodation, food, childcare and home help). Half of the reviewed studies included assessments of indirect costs, most commonly estimating work-related income loss by evaluating employment disruptions. Assessments of opportunity costs arising from informal caregiving and of financial support were rarely included. CONCLUSIONS: Current estimates of the financial burden faced by families of children with life-limiting conditions are inconsistent and often incomplete, likely resulting in severe underestimations of the costs these families incur. We hope that the framework presented in this article will contribute to a more comprehensive assessment of illness-related financial burden and help guide future policies in this area.