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

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

*Corresponding author for this work

Research output: Contribution to journalArticle

20 Citations (Scopus)

Abstract

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
JournalCancer
Volume119
Issue number2
DOIs
StatePublished - Jan 15 2013

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Kidney Neoplasms
Comparative Effectiveness Research
Population
Age Distribution
Renal Cell Carcinoma
Information Systems
Health Status
Comorbidity
Therapeutics
Demography
Education
Surveys and Questionnaires
Neoplasms
Patient Reported Outcome Measures

Keywords

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

ASJC Scopus subject areas

  • Cancer Research
  • Oncology

Cite this

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title = "General population norms for the Functional Assessment of Cancer Therapy-Kidney Symptom Index (FKSI)",
abstract = "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.",
keywords = "general population, patient-reported outcome, quality of life, questionnaire, renal cell cancer",
author = "Zeeshan Butt and Peipert, {John Devin} and Webster, {Kimberly A} and Connie Chen and David Cella",
year = "2013",
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journal = "Cancer",
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T1 - General population norms for the Functional Assessment of Cancer Therapy-Kidney Symptom Index (FKSI)

AU - Butt, Zeeshan

AU - Peipert, John Devin

AU - Webster, Kimberly A

AU - Chen, Connie

AU - Cella, David

PY - 2013/1/15

Y1 - 2013/1/15

N2 - 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.

AB - 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.

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