Expert survey on coverage and characteristics of pediatric palliative care in Europe – a focus on home care

For the online questionnaire, potential items were identified through a literature search and additionally formulated by professionals of a pediatric palliative care facility in Germany. They had many years of in-depth knowledge in the care of pediatric palliative patients and in the current research and literature on pediatric palliative care. Therefore, the supplemented items resulted from identified knowledge gaps that were collectively deemed relevant.

These items were then presented to pediatric palliative care professionals in different European countries. Their feedback was discussed by the team putting together the initial questionnaire, and adaptations to the questionnaire were made. The adapted questionnaire was then circulated within a smaller international group via e-mail until all participants reached agreement regarding relevance, applicability and comprehensibility of the adaptations. The draft questionnaire was translated into an online version using the QuestionPro platform (Berlin, https://​www.​questionpro.​de) and sent for a pre-test to 10 test respondents with pediatric palliative care expertise. Based on their feedback, the questionnaire was revised and finalized. The final questionnaire structure first enquired about the existence of different national pediatric palliative care activities and services. If the availability of pediatric palliative home care teams was indicated, detailed questions followed (please see Supplemental Material 1 and 2).

For answering the final questionnaire, pediatric palliative care experts were sought in the total of 50 EU member states, candidate countries and further countries in Europe according to the European Commission's definition (excluding the Russian Federation, the Vatican City State; [24]) between March 2020 and February 2021. An internet search in e.g., the literature search engine PubMed, Google, career portals (e.g., Xing, LinkedIn) and social/research networks (e.g., ResearchGate, Facebook) was conducted targeting people that had experience with pediatric palliative care. Additional contact people were identified through personal networks and national expert associations.

By means of a standardized e-mail, these individuals were informed about the study background and asked whether they would consider themselves sufficiently qualified for providing reliable information on pediatric palliative care in their country. If this was not the case, they were invited to name a potential informant. Those who confirmed having the necessary qualifications and wished to complete the questionnaire were sent it together with the electronic study information and consent form.

Ethics approval for the study was obtained from the clinical ethics committee of the Children’s and Adolescents’ Hospital Datteln, Germany (approval code: 2022/04/20/BZ).

The questionnaire data were extracted and converted into the SPSS file format (IBM, version 27). All analyses were performed at country-level using descriptive statistics. Point biserial correlations were calculated to determine possible relationships between the presence and number of national pediatric palliative care activities and services. Because of expected cell frequency less than 5, associations between the presence of national pediatric palliative care activities and of pediatric palliative care services were determined using the Fisher-Freeman-Halton exact test. Graphical geographical depictions were generated via the free online tool MapChart (https://​mapchart.​net/​).

Experts from N = 38 countries responded to the online questionnaire. Multiple datasets were submitted from some countries. In this case, whichever questionnaire provided the most comprehensive data was kept (exclusion of n = 5, 13.15%, questionnaires; final dataset: N = 33 countries).

Respondents had median 14 years (M = 13.5; SD = 9.8, range = 0–40 years) of first-hand pediatric palliative care experience with the majority being physicians (n = 21, 65.6%; nurses: n = 2, 6.3%; researchers: n = 2, 6.3%; other: n = 7, 21.9%; missing information: n = 1). Experts were chosen based on their expertise in PPC (Table 1).

Across all countries, pediatric palliative home care represented the most and pediatric palliative care units the least pervasive (n = 21, 65.6% versus n = 5, 15.6% respectively) service. The existence of national documents and professional networks was confirmed by more than half of the countries surveyed (documents: n = 19, 59.4%; networks: n = 18, 54.5%; Fig. 1). A national plan or strategy existed in n = 9 (27.3%) countries and was likewise under development in n = 9 (27.3%) countries.

No pediatric palliative care service or national activity could be identified in Albania and Malta. In Armenia, solely a national plan/strategy was under development. Spain alone was able to affirm the existence of all inquired activities and services. The largest number of pediatric palliative home care (n = 66) was reported in Poland, of clinical consultation services in Spain (n = 30), of pediatric palliative care units in Turkey (n = 7), of inpatient children’s and adolescents’ hospices in the United Kingdom (n = 54) and of outpatient children’s hospice services in Germany (n = 165; Table 2).

A significant negative correlation was identified between the number of pediatric palliative care unit beds and the existence of a country’s national pediatric palliative care documents (r = -0.99, p < 0.01). No other significant associations were found between national PPC activities’ existence and the number of established PPC services.

Among the national activities, a significant association was solely evident between the existence of a national plan/ strategy and national networks (Fisher-Freeman-Halton exact test, p < 0.05, Cramer’s V: 0.49).

In n = 18 (85.7%) of the n = 21 countries generally confirming the existence of pediatric palliative home care, patients could take advantage of the service from the time their illness was diagnosed (only during end-of-life period: n = 3 countries, 14.3%). The care of oncological and of non-oncological / non-ventilated patients was generally confirmed by all countries, while other patient groups were not cared for by any home care team in some countries (Fig. 2). Most respondents cited an age of 18 years (n = 14, 66.7%) as patients’ upper age limit for eligibility for pediatric palliative home care (16 years: n = 1, 4.8%; 19 years: n = 2, 9.5%, 21 years: n = 3, 14.3%; 23 years: n = 1, 4.8%).

In the majority of countries, pediatric palliative home care was neither limited in time (e.g., to 4 weeks per year; not limited: n = 19, 90.5%; limited: n = 2, 9.5%) nor associated with private costs (free of charge: n = 20, 95.2%; private charges: n = 1, 4.8%). The service was mainly funded by government (n = 9 countries, 42.9%), followed by health insurances (n = 7 countries, 33.3%), donations (n = 2 countries, 9.5%) and other sources (n = 3 countries, 14.3%). Access was given by referral from a physician in most countries (n = 15, 71.4%; privately arranged: n = 4 countries, 19%; and other: n = 2 countries, 9.5%). The home care team location was mainly exclusively (n = 8, 38.1%) or mostly (n = 3; 14.3%) hospital-based, in n = 6 (28.6%) countries mostly community-based and in n = 4 countries (19.0%) exclusively community-based.

In n = 12 countries (57.1%), home care teams were only available in one or a few regions, and in n = 5 countries (23.8%) in most regions.

Medical care (n = 17, 81.0%), nursing care (n = 15, 71.4%) and care coordination (n = 15, 71.4%) were most frequently named as being offered by all pediatric palliative home care teams in a country (Fig. 3).

In n = 17 (81.1%) countries with pediatric palliative home care, at least two professions were engaged in all national teams (indicating multi-professionalism, please see Supplemental Material 3). In all multi-professional teams, physicians and nurses worked together. The greatest number of different professional groups involved in all home care teams was reported by the Czech Republic. In the Republic of Moldova, no professional group was consistently represented in all pediatric palliative home care offerings; the professions varied widely. In Spain, Belgium, and Austria only one professional group was consistently represented in all pediatric palliative home care offerings in each country.

Solely in the Netherlands, France, Denmark and Germany, pediatric palliative home care (n = 4, 19.0%) was confirmed as being available in all regions. For these countries, multi-professionalism across all national home care teams could also be noted (median = 4, range = 2–6 different professional groups; Fig. 3). 24/7 telephone consultation was offered in n = 10 (47.6%) and 24/7 outreach service in n = 6 (28.6%) countries by all teams (Table 3 and Fig. 4).

The present study aimed to provide detailed information on the provision situation and concrete services of pediatric palliative care in Europe. Overall, pediatric palliative home care was identified as the most widespread pediatric palliative care service, which is consistent with existing literature [18]. At the country level, the results on existing pediatric palliative care services differed partly from the “EAPC Atlas of Palliative Care in Europe 2019” data [18] and the data reported by Arias-Casais et al. [19]. As a possible cause for discrepancies like these, the chosen descriptions and naming of the queried services may be considered. For example, for pediatric palliative care units the study did not inquire about pediatric palliative care teams in acute hospitals, but rather explicitly asked about units solely admitting pediatric palliative patients. Although both wordings ask for similar information at their core it is nevertheless conceivable that the key experts evaluated and listed different services than in other surveys [17, 18, 25, 26].

The existence of national plans or strategies was inquired separately from the existence of official pediatric palliative care documents. Even though both aspects can theoretically coincide, since national plans and strategies may also be delineated in official documents, the reason for this was that there could theoretically also be disparities between the two aspects. The study results support this assumption showing many countries had pediatric palliative care documents, but no national plans or strategies available; nor could any correlations between the two aspects be identified. Another reason for the discrepancy between our findings and those of the EAPC Atlas could be divergent professional backgrounds and information of the informants that we interviewed. For example, if an informant is a healthcare professional with global expertise and overview of the national healthcare system, but is not an active healthcare worker himself (in pediatric palliative care), she or he may have different information than a person who is "close to the action" and actively follows national developments in pediatric palliative care. To avoid any discrepancies, fixed criteria should be developed and evaluated in the future regarding which individuals should be considered as informants for studies such as the present one. Linkages between the national pediatric palliative care activities and individual pediatric palliative care services were identified. Possible indicators of the extent to which pediatric palliative care is integrated into a country's health care system have been pointed out and are reflected in the pediatric palliative care services we surveyed (for example, number of pediatric palliative care consultants [27]). Our results may therefore suggest that the pediatric palliative care services surveyed may indeed be good indicators for examining the current integration of pediatric palliative care in a national healthcare system and may already reflect certain developing tendencies of countries [27].

We identified a negative association between the number of pediatric palliative care unit beds and whether a country had national pediatric palliative care documents. This result may also reflect a country's efforts to establish stronger pediatric palliative care and improve the state of current care. If only few practical implementations of pediatric palliative care beds exist, then national documents can be used to better expand these structures in the future. Ultimately, however, we cannot draw any causal conclusions in this study. This and other associations should be explored further in follow-up studies. Across all countries, we were generally able to show a broad range of services offered by pediatric palliative home care teams with none of the queried services not being offered in any country. Further, in all but three countries, the in-country experts confirmed the existence and availability of pediatric palliative home care at no cost to families, which is encouraging given that young patients and their families primarily desire care in the home setting [8]. This underlines the important role national policies can play.

In all but four countries, pediatric palliative home care teams were organized multi-professionally and thus aligned with the core rationale of pediatric palliative care [2, 3]. Medical and nursing staff was present in all multi-professional home care teams in all countries and thus can be considered a core component or basis of the pediatric palliative home care team. The composition of the teams showed a rather heterogeneous picture across all countries.

Some results appear surprising. For example, some of the apparently straightforward home care services that one would expect in pediatric palliative care such as medical or nursing care and care coordination were actually delivered in a number of countries by only a few teams or were not at all delivered by pediatric palliative home care teams. To obtain more information on the quality and scope of services of individual home care teams in a country and across Europe, specific (questionnaire) measures should be used in the next step. One such instrument may be the recently developed “EXPERIENCE@Home” which assesses families’ experiences with pediatric palliative home care, e.g., regarding physical aspects and continuity of care [28]. Especially for premature babies or critically ill newborns and for ventilated patients, care by pediatric palliative home care teams is not guaranteed in all European countries. Perhaps, teams do not care for perinatal and neonatal patients in some countries because they are not integral part of the care network. In the long term, the networking of pediatric palliative care services and other disciplines is crucial for providing families with the best possible support, especially regarding the care of their child at home [9, 12, 20, 29].

A major limitation of the study concerns its data basis. Even if explicitly pediatric palliative care experts were surveyed in the respective countries, this appraisal was ultimately based on single respondents’ subjective judgments. The discrepancy between other existing studies and the results of this study may be due to the fact that the people consulted possessed different information and perspectives which cannot be conclusively objectified [18, 19]. An interesting approach to systematically combine different sources of information is the so-called “community needs assessment (CNA)”, through which the resources and needs of a particular area can be thoroughly identified and information provided for future programming and policy [8]. A CNA has already been applied to the American state of Georgia to gather the respective pediatric palliative care resources as comprehensively as possible [8, 30]. For the present study, a CNA was not chosen because it was first necessary to create an overview of whether and what kind of access to informants is actually possible in the European countries. In principle, the (subjective) questioning of experts can never be completely eliminated and represents a significant information base; however, it should be equipped with further information accesses in order to allow a more comprehensive picture of the pediatric palliative care situation. Our study with the corresponding methodology can represent an important first step in this direction. Even though the definitions of the pediatric palliative care services we surveyed were developed in collaboration with colleagues across Europe, it remains conceivable that we did not fully capture the pediatric palliative care situation in some countries. By incorporating different types of information sources to find out how pediatric palliative care is defined in a given country and where it actually takes place in the healthcare system should be addressed in future projects.

The present study only applies to select European countries. On the one hand, our data do not allow us to describe the overall European pediatric palliative care status, and on the other hand, more complex statistical analyses were not possible due to the relatively small number of cases. For example, it would be interesting to see whether model-like links and causalities between national pediatric palliative care activities and services can be identified. Further studies involving additional countries are required to facilitate detailed statements on the global pediatric palliative care situation.