title: Important and relevant symptoms including pain concerns in hepatocellular carcinoma (HCC): a patient interview study.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA, k-kaiser@northwestern.edu.
authors.forename: Karen
authors.initials: K
authors.lastname: Kaiser
authors.forename: Rajiv
authors.initials: R
authors.lastname: Mallick
authors.forename: Zeeshan
authors.initials: Z
authors.lastname: Butt
authors.forename: Mary F
authors.initials: MF
authors.lastname: Mulcahy
authors.forename: Al B
authors.initials: AB
authors.lastname: Benson
authors.forename: David
authors.initials: D
authors.lastname: Cella
mesh_terms: D000328:Adult; D000368:Aged; D006528:Carcinoma, Hepatocellular / Q000150:complications*; D005221:Fatigue / Q000209:etiology; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008113:Liver Neoplasms / Q000150:complications*; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000175:diagnosis* / Q000209:etiology; D011788:Quality of Life; D011795:Surveys and Questionnaires; D063189:Symptom Assessment