General population norms for the Functional Assessment of Cancer Therapy-Kidney Symptom Index (FKSI).
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.
Department of Medical Social Sciences, Comprehensive Transplant Center, and Institute for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, Illinois 60611, USA. z-butt@northwestern.edu
Zeeshan
Z
Butt
John
J
Peipert
Kimberly
K
Webster
Connie
C
Chen
David
D
Cella
D000293:Adolescent; D000328:Adult; D000368:Aged; D002292:Carcinoma, Renal Cell / Q000473:pathology / Q000628:therapy; D057186:Comparative Effectiveness Research; D005260:Female; D006801:Humans; D007680:Kidney Neoplasms / Q000473:pathology / Q000628:therapy; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012016:Reference Values; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D055815:Young Adult