The ability of informal primary caregivers to accurately report cancer patients' difficulties

Authors

  • Yves Libert,

    Corresponding author
    1. Unité de Recherche en Psychosomatique et Psycho-oncologie, Faculté des Sciences Psychologiques et de l'Éducation, Université Libre de Bruxelles, Brussels, Belgium
    2. Clinique de Psycho-Oncologie, Institut Jules Bordet, Université Libre de Bruxelles, Brussels, Belgium
    • Correspondence to: Clinique de Psycho-Oncologie, Institut Jules Bordet, Université Libre de Bruxelles, Brussels, Belgium. E-mail: yves.libert@bordet.be

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  • Isabelle Merckaert,

    1. Unité de Recherche en Psychosomatique et Psycho-oncologie, Faculté des Sciences Psychologiques et de l'Éducation, Université Libre de Bruxelles, Brussels, Belgium
    2. Clinique de Psycho-Oncologie, Institut Jules Bordet, Université Libre de Bruxelles, Brussels, Belgium
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  • Jean-Louis Slachmuylder,

    1. Centre de Psycho-Oncologie (asbl), Brussels, Belgium
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  • Darius Razavi

    1. Unité de Recherche en Psychosomatique et Psycho-oncologie, Faculté des Sciences Psychologiques et de l'Éducation, Université Libre de Bruxelles, Brussels, Belgium
    2. Clinique de Psycho-Oncologie, Institut Jules Bordet, Université Libre de Bruxelles, Brussels, Belgium
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Abstract

Background

In cancer care, informal primary caregivers provide healthcare professionals with key information regarding patient difficulties. The aim of this study was to assess their ability to report cancer patients' physical, psychological, and social difficulties.

Methods

We recruited 208 consecutive patients and their informal primary caregivers in 10 oncology units. Patients reported their difficulties on the CAncer Rehabilitation Evaluation System (CARES-P), whereas caregivers reported their perception of patient difficulties on an adapted CARES questionnaire (CARES-C). On the basis of CARES-P and CARES-C questionnaire answers, correct report rates were defined by the percentage of difficulties reported at least ‘a little’ by patients and by caregivers. False report rates were defined by the percentage of difficulties not reported at least ‘a little’ by patients and reported by caregivers. Patients and their caregivers also provided their distress levels (Hospital Anxiety and Depression Scale) and coping strategies.

Results

Caregivers correctly reported 67% of physical, 69% of psychological, and 40% of social difficulties experienced in patients. Caregivers falsely reported 28% of physical, 37% of psychological, and 22% of social difficulties not experienced by patients. Significant correlations were found between all correct and false reported rates. Patient and caregiver characteristics were weakly associated with caregivers' correct and false reports.

Conclusions

Family primary caregivers correctly reported approximately two thirds of physical and psychological patients' difficulties; however, they had less accurate reports of patients' social difficulties. Correct report rates increased the probability of false report rates. Healthcare professionals should carefully evaluate the accuracy of a primary informal caregiver's report in regards to patient experiences. Copyright © 2013 John Wiley & Sons, Ltd.

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