General population norms for the Functional Assessment of Cancer Therapy-Kidney Symptom Index (FKSI)

Zeeshan Butt*, John Peipert, Kimberly Webster, Connie Chen, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

23 Scopus citations


Background: Metastatic renal cell cancer is associated with poor long-term survival and has no cure. Traditional clinical endpoints are best supplemented by patient-reported outcomes designed to assess symptoms and function. Normative data was obtained on the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy-Kidney Symptom Index (NFKSI) to aid in score interpretation and planning of future trials. Methods: General population data were obtained from 2000 respondents, who completed the 19-item NFKSI-19, as well the SF-36 (Short Form 36-item instrument) and the PROMIS-29 (29-item Patient Reported Outcomes Measurement Information System), both general health status measures. Basic demographic and self-reported comorbidity data were also collected. Results: The sample was 50% female, 85.7% caucasian, with an equal distribution across age bands from 18 years to 75 years and older. Most respondents (62.8%) had more than a high school education and reported an Eastern Cooperative Oncology Group performance status of normal activity without symptoms (63.4%). Score distributions on the NFKSI-19, its subscales, and individual items are summarized. Conclusions: The NFKSI-19 and its subscales now have scores for the general US population, allowing comparability to generic questionnaires such as the SF-36 and PROMIS-29. These data can be used to guide treatment expectations and plan future comparative effectiveness research using the scales.

Original languageEnglish (US)
Pages (from-to)429-437
Number of pages9
Issue number2
StatePublished - Jan 15 2013


  • general population
  • patient-reported outcome
  • quality of life
  • questionnaire
  • renal cell cancer

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

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