Symptom burden among patients with Renal Cell Carcinoma (RCC): content for a symptom index

Gale Harding¹ , David Cella² , Don Robinson Jr³ , Parthiv J Mahadevia¹ , Jason Clark³ and Dennis A Revicki¹

¹UBC Center for Health Outcomes Research, 7101 Wisconsin Ave., Suite 600, Bethesda MD, USA

²Evanston Northwestern Healthcare & Northwestern University Place, Suite 100, Evanston, IL, USA

³Outcomes Research, Centocor Research and Development, Inc., 200 Great Valley Parkway, Malvern, PA, USA

author email corresponding author email

Health and Quality of Life Outcomes 2007, 5:34doi:10.1186/1477-7525-5-34


Published:	14 June 2007

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.

Conclusion

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.