Symptom burden and patient characteristics in specialist palliative care: a descriptive analysis

Wikert, Julia; Gesell, Daniela; Lehmann-Emele, Eva; Bausewein, Claudia; Jansky, Maximiliane; Hodiamont, Farina; Boulesteix, Anne-Laure; Kranz, Steven; Leidl, Reiner; Melching, Heiner; Nauck, Friedemann; Niessl, Christina; Schatz, Caroline; Schneider, Nelli; Stöber, Alisa; Ullmann, Theresa (2026): Symptom burden and patient characteristics in specialist palliative care: a descriptive analysis. BMC Palliative Care, 25: 53. ISSN 1472-684X

Abstract

Background

In Germany, specialist palliative care (SPC) is provided by palliative care units (PCU), hospital-based palliative care advisory (PCA) teams, and specialist palliative home care (SPHC) teams. Systematic cross-setting comparisons are lacking. Such comparisons are essential to identify setting-specific patient needs and differences and to inform tailoring of care structures, resource allocation, and training to setting-specific needs. We therefore aim to compare settings regarding patient characteristics, symptom/problem burden, functional status, and palliative care phase.

Methods

Secondary analysis of a prospective, cross-sectional, multi-centre study including 3,115 care episodes (PCU: 753; PCA: 1,568; SPHC: 794) across 29 SPC services. Data collection included symptom/problem burden using the Integrated Palliative care Outcome Scale (IPOS), functional status by Australia-modified Karnofsky Performance Status (AKPS), and Palliative Care Phase. Presence of symptoms was defined as any IPOS item ≥ moderate, sometimes or partly addressed.

Results

Patients had a mean age of 72 years, 51% were female, and 73% had cancer. Weakness (78–90%) and poor mobility (71–85%) were most frequent across all settings. Pain (54%) and poor appetite (63%) were most pronounced in SPHC, while anxiety (61%) dominated in PCA. Median IPOS sum scores were highest in SPHC (24), followed by PCA (22) and PCU (21). Median AKPS scores were overall low, with 30 in inpatient settings and 40 in SPHC, reflecting significant functional impairment. Palliative care phases varied significantly (p < .001), with the unstable phase predominant in PCU (43%) and PCA (34%), and the stable phase in SPHC (43%), on admission. High rates of “cannot assess” responses, especially in psychosocial and practical domains, influenced prevalence estimates.

Conclusions

Patients in German SPC experience substantial symptom burden and diverse care needs, varying by setting. The findings highlight the necessity for setting-tailored assessment tools, specialized training, and systemic development to improve care quality and patient outcomes.

Key message

Patients in SPC experience a consistently high level of care needs, though symptom profiles vary by setting. Each SPC setting plays a vital role in addressing complex care challenges, underscoring the importance of tailored, setting-specific approaches to effectively meet diverse patient needs and improve outcomes across different care environments.

• Dokumententyp: Artikel (Klinikum der LMU)
• Organisationseinheit (Fakultäten): 07 Medizin > Klinikum der LMU München > Klinik und Poliklinik für Palliativmedizin
• DFG-Fachsystematik der Wissenschaftsbereiche: Lebenswissenschaften
• DFG: Gefördert durch die Deutsche Forschungsgemeinschaft (DFG) - 491502892