Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
BMC Palliative Care
Published in: BMC Palliative Care 1/2023

Open Access 01-12-2023 | Research

Symptom and problem clusters in German specialist palliative home care - a factor analysis of non-oncological and oncological patients’ symptom burden

Authors: Daniela Gesell, Farina Hodiamont, Julia Wikert, Eva Lehmann-Emele, Claudia Bausewein, Friedemann Nauck, Maximiliane Jansky, , for the COMPANION study group

Published in: BMC Palliative Care | Issue 1/2023

Login to get access

Abstract

Background

Specialist palliative home care (SPHC) aims to maintain and improve patients’ quality of life in the community setting. Symptom burden may differ between oncological and non-oncological patients. However, little is known about diagnosis-related differences of SPHC patients. This study aims to describe the prevalence of physical symptom burden and psychosocial problems of adult patients in SPHC, and to evaluate diagnosis-related symptom clusters.

Methods

Secondary analysis of data from a prospective, cross-sectional, multi-centre study on complexity of patients, registered at the German Register for Clinical Studies (DRKS trial registration number: DRKS00020517, 12/10/2020). Descriptive statistics on physical symptom burden and psychosocial problems at the beginning of care episodes. Exploratory and confirmatory factor analyses to identify symptom and problem clusters.

Results

Seven hundred seventy-eight episodes from nine SPHC teams were included, average age was 75 years, mean duration of episode 18.6 days (SD 19.4). 212/778 (27.2%) had a non-oncological diagnosis. Main burden in non-oncological episodes was due to poor mobility (194/211; 91.9%) with significant diagnosis-related differences (χ² = 8.145, df = 1, p = .004; oncological: 472/562; 84.0%), and due to weakness (522/565; 92.4%) in oncological episodes. Two symptom clusters (psychosocial and physical) for non-oncological and three clusters (psychosocial, physical and communicational/practical) for oncological groups were identified. More patients in the non-oncological group compared to the oncological group showed at least one symptom cluster (83/212; 39.2% vs. 172/566; 30.4%).

Conclusion

Patients with non-oncological diseases had shorter episode durations and were more affected by symptom clusters, whereas patients with oncological diseases showed an additional communicational/practical cluster. Our findings indicate the high relevance of care planning as an important part of SPHC to facilitate anticipatory symptom control in both groups.
Appendix
Available only for authorised users
Literature
1.
2.
Miaskowski C, Barsevick A, Berger A, Casagrande R, Grady PA, Jacobsen P, Kutner J, Patrick D, Zimmerman L, Xiao C, et al. Advancing symptom science through symptom cluster research: expert panel proceedings and recommendations. J Natl Cancer Inst. 2017;109(4):djw253.PubMedPubMedCentralCrossRef
3.
Dodd MJ, Miaskowski C, Paul SM. Symptom clusters and their effect on the functional status of patients with cancer. Oncol Nurs Forum. 2001;28(3):465–70.PubMed
4.
Omran S, Khader Y, McMillan S. Symptom clusters and quality of life in hospice patients with cancer. Asian Pac J Cancer Prevention. 2017;18(9):2387.
5.
Dong ST, Costa DS, Butow PN, Lovell MR, Agar M, Velikova G, Teckle P, Tong A, Tebbutt NC, Clarke SJ. Symptom clusters in advanced cancer patients: an empirical comparison of statistical methods and the impact on quality of life. J Pain Symptom Manag. 2016;51(1):88–98.CrossRef
6.
Kim H-J, McGuire DB, Tulman L, Barsevick AM. Symptom clusters: concept analysis and clinical implications for cancer nursing. Cancer Nurs. 2005;28(4):270–84.PubMedCrossRef
7.
Skerman HM, Yates PM, Battistutta D. Cancer-related symptom clusters for symptom management in outpatients after commencing adjuvant chemotherapy, at 6 months, and 12 months. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer. 2012;20(1):95–105.PubMedCrossRef
8.
Bjerkeset E, Röhrl K, Schou-Bredal I. Symptom cluster of pain, fatigue, and psychological distress in breast cancer survivors: prevalence and characteristics. Breast Cancer Res Treat. 2020;180(1):63–71.PubMedPubMedCentralCrossRef
9.
Stapleton SJ, Holden J, Epstein J, Wilkie DJ. Symptom clusters in patients with cancer in the hospice/palliative care setting. Support Care Cancer. 2016;24(9):3863–71.PubMedPubMedCentralCrossRef
10.
Koyama N, Matsumura C, Tahara Y, Sako M, Kurosawa H, Nomura T, Eguchi Y, Ohba K, Yano Y. Symptom clusters and their influence on prognosis using EORTC QLQ-C15-PAL scores in terminally ill patients with cancer. Support Care Cancer. 2022;30(1):135–43.PubMedCrossRef
11.
Kirkova J, Walsh D, Aktas A, Davis MP. Cancer symptom clusters: old concept but new data. Am J Hosp palliat Care. 2010;27(4):282–8.PubMedCrossRef
12.
Dong ST, Butow PN, Costa DS, Lovell MR, Agar M. Symptom clusters in patients with advanced cancer: a systematic review of observational studies. J Pain Symptom Manag. 2014;48(3):411–50.CrossRef
13.
Gutiérrez Sánchez D, Leiva-Santos JP, Cuesta-Vargas AI. Symptom burden clustering in chronic kidney disease stage 5. Clin Nurs Res. 2019;28(5):583–601.PubMedCrossRef
14.
Fei F, R JS, Zhang X, Gao W, Koffman J. Symptom clusters, associated factors and health-related quality of life in patients with chronic obstructive pulmonary disease: a structural equation modelling analysis. J Clin Nurs. 2023;32(1–2):298–310.PubMedCrossRef
15.
Stiel S, Matthies DM, Seuß D, Walsh D, Lindena G, Ostgathe C. Symptoms and problem clusters in cancer and non-cancer patients in specialized palliative care—is there a difference? J Pain Symptom Manag. 2014;48(1):26–35.CrossRef
16.
Barsevick AM, Whitmer K, Nail LM, Beck SL, Dudley WN. Symptom cluster research: conceptual, design, measurement, and analysis issues. J Pain Symptom Manage. 2006;31(1):85–95.PubMedCrossRef
17.
Ditscheid B, Krause M, Lehmann T, Stichling K, Jansky M, Nauck F, Wedding U, Schneider W, Marschall U, Meißner W, et al. Palliativversorgung am Lebensende in Deutschland: Inanspruchnahme und regionale verteilung. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz. 2020;63(12):1502–10.PubMedPubMedCentralCrossRef
18.
Schneider W, Eichner E, Thoms U, Stadelbacher S, Kopitzsch F. Specialised out-patient palliative care (SAPV) in Bavaria: efficiency, structural and process-related effects and rural care. Gesundheitswesen. 2014;77(3):219–24.PubMed
19.
Lehmann E, Hodiamont F, Landmesser M, Knobloch CS, Nauck F, Ostgathe C, Grüne B, Bausewein C. Adaptation of the Australian palliative care phase concept to the German palliative care context: a mixed-methods approach using cognitive interviews and cross-sectional data. BMC Palliat Care. 2021;20(128):1–11.
20.
Von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP, Initiative S. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. Annals of Internalional Medicine. 2007;147(8):573–7.CrossRef
21.
Swart E, Bitzer EM, Gothe H, Harling M, Hoffmann F, Horenkamp-Sonntag D, Maier B, March S, Petzold T, Röhrig R, et al. A Consensus German Reporting Standard for Secondary Data Analyses, Version 2 (STROSA-STandardisierte BerichtsROutine für SekundärdatenAnalysen). Gesundheitswesen. 2016;78(S 01):e145-60.PubMedCrossRef
22.
Hodiamont F, Schatz C, Gesell D, Leidl R, Boulesteix A-L, Nauck F, Wikert J, Jansky M, Kranz S, Bausewein C. COMPANION: development of a patient-centred complexity and casemix classification for adult palliative care patients based on needs and resource use–a protocol for a cross-sectional multi-centre study. BMC Palliat Care. 2022;21(1):1–9.CrossRef
23.
Abernethy AP, Shelby-James T, Fazekas BS, Woods D, Currow DC. The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice. BMC Palliat care. 2005;4(1):1–12.CrossRef
24.
Murtagh FE, Ramsenthaler C, Firth A, Groeneveld EI, Lovell N, Simon ST, Denzel J, Guo P, Bernhardt F, Schildmann E. A brief, patient-and proxy-reported outcome measure in advanced illness: validity, reliability and responsiveness of the integrated palliative care outcome scale (IPOS). Palliat Med. 2019;33(8):1045–57.PubMedPubMedCentralCrossRef
25.
Khan L, Cramarossa G, Chen E, Nguyen J, Zhang L, Tsao M, Danjoux C, Barnes E, Sahgal A. Holden LJWJoO: Symptom clusters using the edmonton symptom assessment system in patients with bone metastases: a reanalysis comparing different statistical methods. World J Oncol. 2012;3(1):23–32.PubMedPubMedCentral
26.
Kim HJ, Abraham IL. Statistical approaches to modeling symptom clusters in cancer patients. Cancer Nurs. 2008;31(5):E1-10.PubMedCrossRef
27.
Skerman HM, Yates PM, Battistutta D. Multivariate methods to identify cancer-related symptom clusters. Res Nurs Health. 2009;32(3):345–60.PubMedCrossRef
28.
Backhaus K, Erichson B, Gensler S, Weiber R, Weiber T. Multivariate Analysemethoden: Eine anwendungsorientierte Einführung. 16. Auflage. Springer; 2021.
29.
Backhaus K, Erichson B, Weiber R. Fortgeschrittene multivariate Analysemethoden: eine anwendungsorientierte Einführung. 3. Auflage. Springer; 2015.
30.
Hu L, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Struct Equation Modeling: Multidisciplinary J. 1999;6(1):1–55.CrossRef
31.
Just J, Schmitz M-T, Grabenhorst U, Joist T, Horn K, Engel B, Weckbecker K. Factors influencing length of survival in ambulatory palliative care - a cross sectional study based on secondary data. BMC Palliat Care. 2021;20(1):69.PubMedPubMedCentralCrossRef
32.
Just J, Schmitz MT, Grabenhorst U, Joist T, Horn K, Weckbecker K. Specialized outpatient palliative care—clinical course and predictors for living at home until death. Deutsches Arzteblatt Int. 2022;119(18):327–32.
33.
Geist M, Keßler J, Bardenheuer H. Analyse der medizinischen Versorgung onkologischer und nichtonkologischer Palliativpatienten in der spezialisierten ambulanten Palliativversorgung (SAPV). Zeitschrift für Palliativmedizin. 2018;19(03):149–55.
34.
Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ (Clinical research ed). 2005;330(7498):1007–11.PubMedCrossRef
35.
Krause M, Ditscheid B, Lehmann T, Jansky M, Marschall U, Meißner W, Nauck F, Wedding U, Freytag A. Effectiveness of two types of palliative home care in cancer and non-cancer patients: a retrospective population-based study using claims data. Palliat Med. 2021;35(6):1158–69.PubMedPubMedCentralCrossRef
36.
37.
Laird BJ, Scott AC, Colvin LA, McKeon A-L, Murray GD, Fearon KC, Fallon MT. Pain, depression, and fatigue as a symptom cluster in advanced cancer. J Pain Symptom Manag. 2011;42(1):1–11.CrossRef
38.
Cheung WY, Le LW, Gagliese L, Zimmermann C. Age and gender differences in symptom intensity and symptom clusters among patients with metastatic cancer. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer. 2011;19(3):417–23.PubMedCrossRef
39.
Yu DS-f, Li PW-c. Chong SO-k: Symptom cluster among patients with advanced heart failure: a review of its manifestations and impacts on health outcomes. Curr Opin Support Palliat Care. 2018;12(1):16–24.PubMedCrossRef
40.
Jansky M, Lindena G, Nauck F. Befinden von Palliativpatienten im Verlauf einer spezialisierten ambulanten oder stationären Versorgung. Der Schmerz. 2012;26(1):46–53.PubMedCrossRef
41.
Chen E, Khan L, Zhang L, Nguyen J, Zeng L, Bedard G, Tsao M, Danjoux C, Barnes E, Sahgal A. Symptom clusters in patients with brain metastases—a reanalysis comparing different statistical methods. J Radiation Oncol. 2013;2:95–102.CrossRef
42.
Yennurajalingam S, Kwon JH, Urbauer DL, Hui D, Reyes-Gibby CC, Bruera E. Consistency of symptom clusters among advanced cancer patients seen at an outpatient supportive care clinic in a tertiary cancer center. Palliat Support Care. 2013;11(6):473–80.PubMedCrossRef
43.
Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991;7(2):6–9.PubMedCrossRef
44.
Chen E, Khan L, Zhang L, Nguyen J, Cramarossa G, Tsao M, Danjoux C, Barnes E, Sahgal A, Holden L. Symptom clusters in patients with bone metastases—a reanalysis comparing different statistical methods. Support Care Cancer. 2012;20(11):2811–20.PubMedCrossRef
45.
Khan L, Cramarossa G, Lemke M, Nguyen J, Zhang L, Chen E, Chow E. Symptom clusters using the Spitzer quality of life index in patients with brain metastases—a reanalysis comparing different statistical methods. Support Care Cancer. 2013;21(2):467–73.PubMedCrossRef
46.
Harding R, Selman L, Simms VM, Penfold S, Agupio G, Dinat N, Downing J, Gwyther L, Ikin B, Mashao T. How to analyze palliative care outcome data for patients in Sub-Saharan Africa: an international, multicenter, factor analytic examination of the APCA African POS. J Pain Symptom Manag. 2013;45(4):746–52.CrossRef
47.
Totman J, Pistrang N, Smith S, Hennessey S, Martin J. You only have one chance to get it right’: a qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer. Palliat Med. 2015;29(6):496–507.PubMedCrossRef
48.
McPherson CJ, Addington-Hall JM. Judging the quality of care at the end of life: can proxies provide reliable information? Soc Sci Med. 2003;56(1):95–109.PubMedCrossRef
Metadata
Title
Symptom and problem clusters in German specialist palliative home care - a factor analysis of non-oncological and oncological patients’ symptom burden
Authors
Daniela Gesell
Farina Hodiamont
Julia Wikert
Eva Lehmann-Emele
Claudia Bausewein
Friedemann Nauck
Maximiliane Jansky
, for the COMPANION study group
Publication date
01-12-2023
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2023
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-023-01296-0

Other articles of this Issue 1/2023

BMC Palliative Care 1/2023 Go to the issue

Correction

Correction: The importance of developing palliative care quality indicators for the prison setting: why now, and next steps

Research

Palliative care needs of Jordanian women’s experience of living with stroke: a descriptive phenomenological study

Correspondence

Response to “The opinion of French pulmonologists and palliative care physicians on non-invasive ventilation during palliative sedation at end of life: a nationwide survey’’

Research

Healthcare professionals’ perspectives of the management of people with palliative care needs in the emergency department of a UK hospital

Research

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic

Research

Effect of an educational intervention on nurses’ competence in activities of daily living support in end-of-life care using a pretest–posttest repeated measures design