Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA, firstname.lastname@example.org.
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.
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).
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.
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.