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Symptom burden in palliative care patients: perspectives of patients, their family caregivers, and their attending physicians

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Abstract

Rationale

The purpose of this study was to prospectively evaluate the perspectives of palliative care patients, their family caregivers, and their attending palliative care specialists on frequency, intensity, distress, and treatment requirement of the patient’s physical and psychological symptoms.

Patients and methods

Forty advanced cancer patients and their family caregivers were recruited through a palliative care inpatient ward within 24 h after admission. Patients, caregivers, and physicians completed a modified version of the Memorial Symptom Assessment Scale (including perceived treatment requirement).

Results

Thirty-nine patients (98 %) suffered from at least one symptom frequently or almost constantly (median number 5; range, 0–9). Most frequent symptoms were lack of energy (95 %), tiredness (88 %), and pain (80 %), which were scored correspondingly by patients, caregivers, and physicians to be the most intensive, distressing, and treatment requiring. Treatment requirement was determined by symptom intensity or distress in patients and physicians, but by distress in caregivers. Significant differences in symptom burden between patients, caregivers, and physicians were found with regard to pain (p = .007), tiredness (p = .037), lack of energy (p < .05), anxiety (p < .05), and sadness (p < .05). Physicians underestimated 60 % of symptom dimensions, while the caregivers overestimated 77 %; however, overall median scoring differences were limited with −.10 (range, −.55 to +.25) between patients and physicians and +.33 (range, −.78 to +.61) between patients and family caregivers.

Conclusions

While physicians tended to underestimate, family caregivers tended to overestimate the patient’s symptoms. Therefore, adequate symptom treatment can only be successful in a close dialog between patients, their caregivers, and a multidisciplinary team.

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Conflict of interest

None of the authors have any conflict of interest. This study was performed without any external funding or financial sponsoring.

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Authors and Affiliations

  1. Department of Oncology, Hematology and Bone Marrow Transplantation with Section of Pneumology, Hubertus Wald Tumor Centrum–University Cancer Center Hamburg, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

    Karin Oechsle, Kathrin Goerth & Carsten Bokemeyer

  2. Institute and Outpatient Clinic of Medical Psychology, University Medical Center Eppendorf, Hamburg, Germany

    Anja Mehnert

  3. Section of Psychosocial Oncology, Department of Medical Psychology and Medical Sociology, University Medical Center, Leipzig, Germany

    Anja Mehnert

Authors
  1. Karin Oechsle
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  2. Kathrin Goerth
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  3. Carsten Bokemeyer
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  4. Anja Mehnert
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Corresponding author

Correspondence to Karin Oechsle.

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Oechsle, K., Goerth, K., Bokemeyer, C. et al. Symptom burden in palliative care patients: perspectives of patients, their family caregivers, and their attending physicians. Support Care Cancer 21, 1955–1962 (2013). https://doi.org/10.1007/s00520-013-1747-1

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  • DOI: https://doi.org/10.1007/s00520-013-1747-1

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