Evidence map›Paper›PMID 23947972›Full record

ArticleValue in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research

Development and initial validation of the NCCN/FACT symptom index for advanced kidney cancer.

Nan E Rothrock, Sally E Jensen, Jennifer L Beaumont, Amy P Abernethy, Paul B Jacobsen, Karen Syrjala, David Cella

Registry-linked trialOpen access · bronzeAbstract readValidation Study
In one paragraph

Article in Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07172386 (A Study on the Safety and Efficacy of Super-selective Tumour Arterial Embolisation in Combination With Toripalimab and Axitinib as a Preoperative Treatment for Advanced Renal Cell Carcinoma), which is not on this map. Cited by 23 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
23citing papers in PubMed, 1 pooled it
0.5field-weighted citation impact, top 31% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT07172386 phase2recruitingnot on this map

A Study on the Safety and Efficacy of Super-selective Tumour Arterial Embolisation in Combination With Toripalimab and Axitinib as a Preoperative Treatment for Advanced Renal Cell Carcinoma

TypeinterventionalSponsorTianjin Medical University Second HospitalRan2025 to 2027Enrolled40ConditionsRenal Cell Carcinoma (RCC)ArmsToripalimab and axitinib
3 · Its place in the literature

Who cites it

23 citing papers in PubMed, 1 synthesis or guideline pooled it, 45 citations in OpenAlex.

  1. The level of association between functional performance status measures and patient-reported outcomes in cancer patients: a systematic review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2015
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  6. Patient-Reported Outcomes from the Phase III Randomized IMmotion151 Trial: AtezolizumabClinical cancer research : an official journal of the American Association for Cancer Research · 2020
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  10. Quality of Life Outcomes for Cabozantinib Versus Everolimus in Patients With Metastatic Renal Cell Carcinoma: METEOR Phase III Randomized Trial.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2018
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  11. Article
  12. Sex differences in health-related quality of life after renal cell carcinoma surgery: a population-based study in Sweden.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
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  13. Understanding data visualization techniques in qualitative studies used to develop and validate patient-reported outcome measures: a targeted literature review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors at 4 institutions in 1 country.

Nan E RothrockDepartment of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA. n-rothrock@northwestern.edu
Sally E Jensen
Jennifer L Beaumont
Amy P Abernethy
Paul B Jacobsen
Karen Syrjala
David Cella
Northwestern University · USDuke Medical Center · USMoffitt Cancer Center · USUniversity of Washington · US

Funding

Internet Studies to Enhance Long Term Survivorship after Hematologic MalignancyR01CA160684 · NCI · FRED HUTCHINSON CANCER RESEARCH CENTER · PI SYRJALA, KAREN LESLIE · 2011 to 2015
$3.4M
Interdisciplinary Studies to Enhance Long Term SurvivalR01CA112631 · NCI · FRED HUTCHINSON CANCER RESEARCH CENTER · PI SYRJALA, KAREN LESLIE · 2005 to 2010
$2.8M
NCI NIH HHS R01 CA112631NCI NIH HHS R01 CA160684
6 · The paper itself

Abstract

objectivesThere is a need for a brief symptom index for advanced kidney cancer that includes perspectives of both patients and clinicians and is consistent with the Food and Drug Administration's guidance for patient-reported outcome measures. This study developed and examined the preliminary reliability and validity of the new National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy (FACT)-Kidney Symptom Index 19.

methodsFifty patients with advanced kidney cancer provided open-ended and survey responses ranking their most important symptoms. Responses were reconciled with published clinician reports of the most important symptoms. Ten experienced oncologists rated symptoms as disease- or treatment-related. Patients completed quality-of-life and performance status measures.

resultsA 19-item index was produced from symptoms that were rated as most important by patients or clinicians. It includes three subscales: disease-related symptoms (DRS), treatment side effects (TSE), and general function and well-being (FWB). Internal consistency was good for the full instrument (α = 0.83), the DRS subscale (α = 0.76), and the FWB subscale (α = 0.78) but lower for the TSE subscale (α = 0.59). Convergent validity was demonstrated through correlations with the FACT-General. Patients with differing performance status were distinguished by the total score (F2,47 = 17.37; P < .0001), the DRS subscale (F2,47 = 14.22; P < .0001), and the FWB subscale (F2,47 = 13.40; P < .0001) but not the TSE subscale (F2,47 =1.48; P = 0.2380).

conclusionsThe National Comprehensive Cancer Network/FACT-Kidney Symptom Index 19 combines symptoms deemed most important by patients and clinicians. Preliminary evidence suggests that the total score and DRS and FWB subscales are reliable and valid as summary indexes. The TSE subscale may be least relevant given the advent of newer therapies.

Indexed as

Quality of LifeSeverity of Illness IndexActivities of Daily LivingAdultAgedFemaleHumansKidney NeoplasmsMaleMiddle AgedPsychiatric Status Rating ScalesReproducibility of ResultsSocioeconomic FactorsTreatment Outcomecancerpatient-reported outcomesquality of lifesymptoms

Identifiers

PMID23947972
PMCPMC5886788
OpenAlexW1976414387

What OpenQuestion holds

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.