Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study
Open accessAbstract
BACKGROUND: Family caregivers play a key role in palliative care at home, and understanding the interdependencies in the constellation of patient, family caregivers and service providers is important. As few longitudinal studies have examined the influence of patient quality of life (QoL) in palliative care on burden of family caregivers, the aim of this study was to identify correlations between changing patient QoL and changing burden of family caregivers that need consideration in patient management. METHODS: Palliative patients with cancer in primary care evaluated their QoL (Quality of Life Questionnaire Core 15 Palliative Care, QLQ-C15-PAL). They were assessed monthly for an interval of 6 months or until death of the patient. Family caregivers reported the burden they perceived while supporting the patient (Short form of the Burden Scale for Family Caregivers, BSFC). Longitudinal data were analysed for all patients with at least 3 available assessments, considering the most recent data for participants with more than 3 assessments. Changes in patient QoL were analysed using the Friedman test. In a stepwise regression analysis, influences of change in patient QoL on changing caregiver burden were investigated. RESULTS: One hundred patients (63 men, 37 women; average age: 68 years) were enrolled in the study. The most common primary diagnoses were colon, lung or breast cancer. In 58 cases, assessments were available from both patients and caregivers. Patients reported overall quality of life increasing towards end of life, although reporting that physical functioning deteriorated. Symptoms of pain and fatigue bothered patients most. Caregiver burden was moderate and on average did not change over time. In a stepwise regression model, the difference in emotional functioning and the difference in dyspnoea showed an influence on the development of caregiver burden (explained variance of 19.3%). CONCLUSIONS: Patients' dyspnoea, feelings of depression and anxiety impacted on the perceived burden of family caregivers, but are manageable symptoms. Our results corroborate the need of regular assessment of patients' needs taking into account caregiver burden. In this way, general practice teams can intervene early and may more likely meet patients' needs in the end of life care process. TRIAL REGISTRATION: Current Controlled Trials ISRCTN78021852, assigned on 04/04/2007.
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The moderate inverse correlation between caregiver burden and quality of life is consistent with other studies.
“se encuentra que la sobrecarga del cuidado tiene una correlación significativa moderada inversa con la calidad de vida del cuidador, lo cual esta acorde con otros estudios 7,11,28”
From Sobrecarga y calidad de vida de cuidadores de personas con cáncer en cuidados paliativos (2021) · cites this paper as [28]
The Background and Methods describe measuring patients’ quality of life and family caregivers’ burden, not caregivers’ quality of life. The Discussion reports no association between declining overall patient quality of life and increasing caregiver burden, but that does not establish or refute the claimed correlation with caregivers’ own quality of life. No passage found reports that correlation or its magnitude. (LLM, conf=0.76)
Experimental — accuracy not yet measuredLa sobrecarga del cuidado tiene una correlación significativa moderada inversa con la calidad de vida del cuidador.
“la sobrecarga del cuidado tiene una correlación significativa moderada inversa con la calidad de vida del cuidador”
From Sobrecarga y calidad de vida de cuidadores de personas con cáncer en cuidados paliativos (2021) · cites this paper as [28]
The Methods (Statistical analyses; page unavailable) describe measuring caregivers’ burden and patients’ quality of life, not caregivers’ quality of life. The Results report an inverse association between caregiver burden and patients’ emotional functioning, but do not report the claimed moderate, significant correlation with caregivers’ quality of life. The Discussion’s finding about overall quality of life also concerns patients, not caregivers. (LLM, conf=0.78)
Experimental — accuracy not yet measuredLa dimensión de bienestar espiritual es la que muestra el puntaje más bajo, lo que podría indicar el impacto espiritual y la necesidad de auto trascendencia y encontrar sentido a la experiencia.
“lo que podría indicar el impacto espiritual y la necesidad de auto trascendencia y encontrar sentido a la experiencia que se ha documentado en otros estudios28”
From Sobrecarga y calidad de vida de cuidadores de personas con cáncer en cuidados paliativos (2021) · cites this paper as [28]
The Methods (Data collection; page unavailable) list the quality-of-life scales but include no spiritual well-being dimension. The Results (Caregiver burden and patient quality of life; page unavailable) do not report a spiritual well-being score, and searches for spirituality, self-transcendence, and finding meaning found no passage supporting the cited point. (LLM, conf=0.77)
Experimental — accuracy not yet measuredLa necesidad de conexión con un ser supremo para mejorar la espiritualidad ha sido documentada en otros estudios.
“En otros estudios se ha documentado la necesidad de conexión con un ser supremo para mejorar la espiritualidad28”
From Sobrecarga y calidad de vida de cuidadores de personas con cáncer en cuidados paliativos (2021) · cites this paper as [28]
The Background discusses supportive relationships with family and social networks, while the Discussion and Conclusions address patient quality of life and caregiver burden. Searches for connection with a supreme being, spirituality, and religious needs found no passage documenting the claimed need. (LLM, conf=0.76)
Experimental — accuracy not yet measured
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- Authors
- Krug, K., Miksch, A., Peters-Klimm, F., Engeser, P., & Szecsenyi, J.
- Affiliations
- University Hospital Heidelberg (DE)
- Corresponding author
- Krug, Katja
- Venue
- BMC Palliative Care
- Published
- 2016-01-15
- Volume
- 15
- Issue
- 1
- Pages
- 4-4
- ISSN
- 1472-684X (ISSN-L)
- PMC
- PMC4714452
- OpenAlex
- W2239477274
- Cited by
- 139
- References
- 26
- Citations by year
- 2026: 9 · 2025: 17 · 2024: 11 · 2023: 15 · 2022: 21 · 2021: 24 · 2020: 14 · 2019: 7 · 2018: 12 · 2017: 7 · 2016: 2
- FWCI
- 9.26
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Palliative Care (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- heiDOK (Heidelberg University) (acceptedVersion, other-oa)
- Funders
- Deutsche Forschungsgemeinschaft
- Universität Heidelberg
- Bundesministerium für Bildung und Forschung (01GK0601)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- patient quality of life, family caregiver burden, home-based palliative care, cancer patients, end-of-life care, dyspnea, emotional functioning, anxiety and depression, pain and fatigue, primary care
- MeSH terms
- Aged, Aged, 80 and over, Fatigue, Female, Home Care Services, Humans, Longitudinal Studies, Male, Middle Aged, Palliative Care, Prospective Studies, Quality of Life, Surveys and Questionnaires, Stress, Psychological, Cohort Studies, Caregivers, Cost of Illness
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