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Eur J Cancer Care (Engl). 2021 May;30(3):e13399. doi: 10.1111/ecc.13399. Epub 2021 Jan 03.

Caregiver distress and quality of life in primary caregivers of oncology patients in active treatment and follow-up.

European journal of cancer care

Ine Decadt, Annouschka Laenen, Janne Celus, Shelly Geyskens, Hannah Vansteenlandt, Annemarie Coolbrandt

Affiliations

  1. Department of Oncology Nursing, University Hospitals Leuven, Leuven, Belgium.
  2. Leuven Biostatistics and Statistical Bioinformatics Centre, KU Leuven, Leuven, Belgium.
  3. Department of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Leuven, Belgium.

PMID: 33393137 DOI: 10.1111/ecc.13399

Abstract

OBJECTIVE: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow-up.

METHODS: This cross-sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver-reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index-Cancer (CQOLC).

RESULTS: Caregivers (n = 1580) experienced a low-to-moderate risk of caregiver distress and a moderate QoL during both treatment and follow-up. About 13% reported a high caregiver risk and 20% reported severe distress. There was a strong and significant correlation between caregiver distress and caregivers' QoL (0.793). Predictive factors for higher distress and poorer QoL were: fewer emotional and practical resources, being female, non-spousal relationship or not living together (p < 0.05). Caregivers of patients with head-and-neck, skin, lung and brain cancers reported the highest distress and lowest QoL.

CONCLUSION: Caregiver distress is highly variable, but a minority of caregivers is at high risk for caregiver distress. Professional caregivers play an important role at supporting caregivers and detecting high-risk caregivers.

© 2021 John Wiley & Sons Ltd.

Keywords: caregiver distress; caregivers; family caregiver; informal caregiver; oncology; quality of life

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