Mapping the need for specialized pediatric palliative care in Luxembourg: A first retrospective hospital study and survey among parents and pediatricians

Technical Summary: Mapping the Need for Specialized Pediatric Palliative Care in Luxembourg

Problem Statement
Luxembourg currently provides Level 1 (palliative approach) and Level 2 (generalized pediatric palliative care) services but lacks a specialized Level 3 pediatric palliative care (sPPC) service, defined as a dedicated interdisciplinary team providing expert care in a specific setting. Despite the World Health Organization identifying pediatric palliative care (PPC) as an ethical responsibility, the country has no specialized sPPC team or pediatric respite facility. Previous estimates suggested 500–600 children in Luxembourg require PPC, yet there was a lack of granular data regarding the specific demographics, clinical profiles, hospital burden, and unmet needs of these families and their treating physicians. The study aimed to identify children requiring sPPC, assess family and pediatrician needs, and provide evidence to support the implementation of a national sPPC team.

Methodology
The study employed a mixed-method design comprising three distinct components conducted between September 2024 and August 2025:

1. Retrospective Observational Cohort Study: Researchers analyzed medical files of children aged 0–18 years hospitalized at the Centre Hospitalier de Luxembourg's National Pediatric Department (CHL-NPD), the country's only tertiary pediatric center. Inclusion criteria were children meeting PPC eligibility Groups 1–4 (life-threatening, inevitable premature death, progressive without cure, or irreversible severe non-progressive conditions). Data collection included diagnosis, age, residence, medical technology dependence, and end-of-life status (assessed via the "surprise question").
2. Family Survey: An anonymous 18-item questionnaire was distributed to families of children under pediatric follow-up via community and hospital pediatricians. The survey assessed satisfaction with care, access to services, care coordination, respite care, and psychosocial burdens.
3. Pediatrician Survey: An anonymous 20-item questionnaire was distributed to pediatricians to evaluate their management of PPC patients, use of advance care planning (ACP), and acceptance of a potential sPPC team.

Data analysis was descriptive, focusing on clinical characteristics, healthcare utilization (hospital days, PICU days, emergency department visits), and survey responses.

Key Results

• Cohort Characteristics: The study identified 159 children requiring PPC (90.6% Luxembourg residents). The mean age was 8 years, with adolescents (11–18 years) representing the largest group (33.3%). Neurological and neuromuscular disorders were the most frequent diagnoses, followed by oncological conditions (18%). Notably, 76.7% of children had a rare disease, and 70% had a genetic or congenital condition.
• Medical Complexity: High levels of medical technology dependence were observed: 28.3% required enteral feeding, 16.9% central venous access, and 13.8% respiratory support. Thirteen children (8%) were in an end-of-life stage.
• Hospital Burden: Although these children represented only 2.7% of all hospitalized pediatric patients, they accounted for 12.9% of total inpatient days and 23.4% of Pediatric Intensive Care Unit (PICU) days. The average length of stay for this cohort was 36 days (median 58), compared to 2.5 days for the general pediatric population.
• Potentially Avoidable Utilization: Analysis of the nine most frequently admitted patients suggested that 25% of their inpatient days could have been avoided with earlier discharge supported by a home-based sPPC team. For PICU admissions, an estimated 55.8% of days could have been avoided with appropriate advance care planning (ACP) and home support. Furthermore, 87.2% of emergency department visits for a subset of high-utilizers were deemed avoidable if an sPPC team had been available to manage concerns at home.
• Family Needs: Of 28 responding families, 20/26 reported their needs were partially or poorly met. Primary issues included parental exhaustion (leading cause of dissatisfaction), insufficient respite care, poor care coordination, and significant financial and administrative burdens. Only 15/23 families had ever received respite care.
• Pediatrician Needs: Of 41 responding pediatricians, 75% cared for PPC patients. While 100% expressed a need for support from an sPPC team, only 14% routinely utilized advance care planning. 83% called for more systematic care planning.

Key Contributions
This study provides the first national field survey in Luxembourg to map the landscape of pediatric palliative care needs. Its primary contributions include:

• Quantification of Burden: Establishing that a small subset of patients (2.7% of admissions) drives a disproportionate share of hospital resources (12.9% of days, 23.4% of PICU days).
• Identification of Avoidable Care: Providing data-driven estimates that a significant portion of hospital and ICU days, as well as emergency visits, could be mitigated through structured advance care planning and home-based specialized support.
• Stakeholder Validation: Documenting the high level of exhaustion among families and the universal demand for specialized support among pediatricians, regardless of their practice setting (private vs. hospital).
• Diagnostic Profiling: Highlighting the dominance of neurological, neuromuscular, and rare genetic conditions in the Luxembourgish PPC population, differing slightly from some international cohorts.

Significance and Claims
The authors claim that this study offers sufficient evidence to persuade relevant authorities to fund a specialized, interdisciplinary mobile sPPC team. The paper argues that the current lack of Level 3 services forces families to rely on the hospital system for care that could be managed at home, resulting in high costs, family exhaustion, and fragmented care.

The study modestly concludes that while the retrospective cohort does not capture the entire population of children with life-limiting conditions (estimates remain at 500–600), the identified cohort represents the most seriously ill children who require immediate specialized intervention. The findings underscore the urgent need to implement an interprofessional mobile sPPC team to improve care coordination, strengthen advance care planning, reduce potentially avoidable hospitalizations, and alleviate the psychosocial and financial burden on families. The authors note that the study is part of a French Interuniversity Diploma in Pediatric Pain and Pediatric Palliative Care and serves as a foundational step toward the goals outlined in the National Palliative Care Plan (2023–2026).