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

Karen Kaiser Tegel*, Rajiv Mallick, Zeeshan Butt, Mary Frances Mulcahy, Al B Benson III, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticle

9 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)919-926
Number of pages8
JournalSupportive Care in Cancer
Volume22
Issue number4
DOIs
StatePublished - Jan 1 2014

Fingerprint

Hepatocellular Carcinoma
Interviews
Pain
Liver Neoplasms
Quality of Life
Therapeutics
Symptom Assessment
Life Change Events
Appetite
Abdomen
Fatigue
Diarrhea
Patient Care
Organizations
Skin
Research

Keywords

  • Hepatocellular carcinoma
  • Pain
  • Quality of life
  • Symptom assessment

ASJC Scopus subject areas

  • Oncology

Cite this

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title = "Important and relevant symptoms including pain concerns in hepatocellular carcinoma (HCC): A patient interview study",
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.",
keywords = "Hepatocellular carcinoma, Pain, Quality of life, Symptom assessment",
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AU - Tegel, Karen Kaiser

AU - Mallick, Rajiv

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AU - Benson III, Al B

AU - Cella, David

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N2 - 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.

AB - 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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