Development and validation of a symptom index for advanced hepatobiliary and pancreatic cancers

The National Comprehensive Cancer Network Functional Assessment of Cancer Therapy (NCCN-FACT) Hepatobiliary-Pancreatic Symptom Index (NFHSI)

Authors

  • Zeeshan Butt PhD,

    Corresponding author
    1. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois
    2. Comprehensive Transplant Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois
    3. Institute for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, Illinois
    4. Robert H. Lurie Comprehensive Cancer Center, Northwestern University, Chicago, Illinois
    • Northwestern University Feinberg School of Medicine, 750 North Lake Shore Drive, 10th Floor, Chicago, IL 60611
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    • Fax: (312) 503-2777

  • Neehar D. Parikh MD,

    1. Comprehensive Transplant Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Jennifer L. Beaumont MS,

    1. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Sarah K. Rosenbloom PhD,

    1. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois
    2. Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Karen L. Syrjala PhD,

    1. Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, Washington
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  • Amy P. Abernethy MD,

    1. Division of Medical Oncology, Department of Medicine, Duke University Medical Center, Durham, North Carolina
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  • Al B. Benson III MD,

    1. Robert H. Lurie Comprehensive Cancer Center, Northwestern University, Chicago, Illinois
    2. Division of Hematology/Oncology, Department of Medicine; Northwestern University Feinberg School of Medicine, Chicago, Illinois We acknowledge Diane Paul and Debra Hampton, from the National Comprehensive Cancer Network, who provided helpful support throughout the conduct of this study. Alexander Bill provided helpful editorial assistance
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  • David Cella PhD

    1. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois
    2. Comprehensive Transplant Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois
    3. Institute for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, Illinois
    4. Robert H. Lurie Comprehensive Cancer Center, Northwestern University, Chicago, Illinois
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Abstract

BACKGROUND:

The 45-item Functional Assessment of Cancer Therapy–Hepatobiliary (FACT-Hep) questionnaire assesses health-related quality of life in patients with liver, bile duct, and pancreatic cancers. Although the FACT-Hep was initially derived from patient input, this study's researchers sought to verify adequate coverage of items by soliciting open-ended input from patients with advanced disease.

METHODS:

As part of a larger study in collaboration with the National Comprehensive Cancer Network (NCCN), 50 people (60% male, 80% caucasian, average age 60.4 years) with stage 3 or 4 hepatobiliary or pancreatic cancer were recruited. Participants generated and ranked up to 10 important symptoms and concerns that physicians should monitor when assessing the value of chemotherapy. Patients were also able to provide open-ended, qualitative information that was evaluated systematically. Ten expert physicians also provided input on priority symptoms.

RESULTS:

The resulting 18-item NCCN-FACT Hepatobiliary-Pancreatic Symptom Index (NFHSI-18) demonstrated high internal consistency (α = .89) and moderate to strong correlations with measures of physical well-being (ρ = .76), emotional well-being (ρ = 0.52), and functional well-being (ρ = 0.57). Scores on the NFHSI-18 were also highly correlated with the original hepatobiliary scale of the FACT-Hep (ρ = .82; all P < .001). Compared with patients with better performance status, patients with poor performance status had worse NFHSI-18 symptom scores, F(3,47) = 9.74; P = .0003.

CONCLUSIONS:

The NFHSI–18 assesses symptoms of importance to patients with hepatobiliary and pancreatic cancers and demonstrates promising measurement properties. The scale is a good candidate for brief symptom assessment in clinical trials. Cancer 2012. © 2012 American Cancer Society.

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