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Important and relevant symptoms including pain concerns in hepatocellular carcinoma (HCC): a patient interview study

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Abstract

Purpose

We examined the health-related quality of life (HRQOL) and pain experiences of patients with hepatocellular carcinoma (HCC) and assessed content validity of existing patient-reported pain items for patients with HCC.

Methods

Semi-structured interviews to elicit symptoms, side effects and concerns were conducted with ten patients with HCC. Symptom and side effect importance was ranked on a 0 to 10 scale. Patients completed pain items from the Functional Assessment of Cancer Therapy—Hepatocellular (FACT-Hep) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire—Hepatocellular-18 (EORTC QLQ-HCC18).

Results

Mean age was 58 years (range 33–77). Spontaneously reported symptoms included fatigue (n = 5), diarrhea (n = 5), skin toxicities (n = 5), and loss of appetite (n = 4). Upon questioning, nine of ten patients reported experiencing pain over the course of their treatment. Over half of the importance rankings given for pain were 8 or higher on a 0 to 10 scale. Abdomen (n = 7) and lower back (n = 3) were the most common sites of pain. Pain onset varied from 6 months pre-diagnosis to over 2 years post-diagnosis. All patients indicated that FACT-Hep and EORTC items adequately assessed their pain.

Conclusions

Results support the content validity of FACT-Hep pain items for patients with HCC. The finding that patients typically did not spontaneously report pain but often ranked it as very important for their HRQOL upon questioning suggests a need for systematic, routine pain and other symptom assessment and management as an integral component of patient care in advanced HCC.

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Conflict of interest

Support for this project was provided by Daiichi Sankyo Inc. Drs. Kaiser and Butt have received research funding from Daiichi Sankyo, Inc. Dr. Cella has received research funding and has a consultant relationship with Daiichi Sankyo. Dr. Mallick was employed by Daiichi Sankyo, Inc. during this project. Dr. Benson has a consultant relationship and is funded by Bayer/Onyx. Dr. Mulcahy has a consultant role with Bayer Onyx. Data are co-owned by Northwestern University and Daiichi Sankyo, Inc. and may be made available upon request.

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Authors and Affiliations

  1. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA

    Karen Kaiser, Zeeshan Butt & David Cella

  2. BTG International Inc., West Conshohocken, PA, USA

    Rajiv Mallick

  3. Comprehensive Transplant Center, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Zeeshan Butt

  4. Department of Medicine—Hematology/Oncology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Mary F. Mulcahy & Al B. Benson

Authors
  1. Karen Kaiser
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  2. Rajiv Mallick
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  3. Zeeshan Butt
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  4. Mary F. Mulcahy
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  5. Al B. Benson
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  6. David Cella
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Correspondence to Karen Kaiser.

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Kaiser, K., Mallick, R., Butt, Z. et al. Important and relevant symptoms including pain concerns in hepatocellular carcinoma (HCC): a patient interview study. Support Care Cancer 22, 919–926 (2014). https://doi.org/10.1007/s00520-013-2039-5

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  • DOI: https://doi.org/10.1007/s00520-013-2039-5

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