title: Symptom burden among patients with renal cell carcinoma (RCC): content for a symptom index.
abstract: BACKGROUND
  Renal cell carcinoma (RCC) has multiple symptoms stemming from disease and treatments. There are few validated scales for evaluating RCC symptoms.
  
  
  METHODS
  A national cross-sectional study of adult RCC patients was conducted from October to December 2003 to define patient-reported RCC symptomology. Participants were asked open-ended questions regarding their signs and symptoms and completed an 86-item pilot questionnaire of physical and psychological symptoms. Patients were asked to rate the relevancy and clarity of each pilot question using a 5-point Likert scale. Subsequent open-ended caregiver interviews and a provider panel relevance ranking contributed additional information.
  
  
  RESULTS
  The average age of the participants (n = 31) was 55 years; 55% of patients were male, 74% had attended college, and 97% were Caucasian. The five most frequent symptoms among localized-stage patients (n = 14) were irritability (79%), pain (71%), fatigue (71%), worry (71%), and sleep disturbance (64%). Among metastatic patients (n = 17), the five most frequent symptoms were fatigue (82%), weakness (65%), worry (65%), shortness of breath (53%), and irritability (53%). More than 50% of localized and metastatic-stage patients reported pain, weakness, fatigue, sleep disturbance, urinary frequency, worry, and mood disorders as being moderately to highly relevant.
  
  
  CONCLUSIONS
  A brief, self-administered RCC Symptom Index was created that captures the relevant signs and symptoms of both localized and metastatic patients. Pending additional content validation, the Index can be used to assess the signs and symptoms of RCC and the clinical benefit resulting from RCC treatment.
authors.affiliation: UBC Center for Health Outcomes Research, Bethesda MD, USA. Gale.Harding@unitedbiosource.com
authors.forename: Gale
authors.initials: G
authors.lastname: Harding
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.forename: Don
authors.initials: D
authors.lastname: Robinson
authors.forename: Parthiv J
authors.initials: PJ
authors.lastname: Mahadevia
authors.forename: Jason
authors.initials: J
authors.lastname: Clark
authors.forename: Dennis A
authors.initials: DA
authors.lastname: Revicki
mesh_terms: D002292:Carcinoma, Renal Cell / Q000503:physiopathology* / Q000523:psychology; D017028:Caregivers; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D007680:Kidney Neoplasms / Q000503:physiopathology* / Q000523:psychology; D008297:Male; D011939:Mental Recall; D008875:Middle Aged; D009367:Neoplasm Staging; D010865:Pilot Projects; D011788:Quality of Life; D012196:Review Literature as Topic; D012649:Self Concept; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D014481:United States