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What bothers lung cancer patients the most? A prospective, longitudinal electronic patient-reported outcomes study in advanced non-small cell lung cancer

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Abstract

Purpose

Patients with advanced non-small cell lung cancer (aNSCLC) face a significant symptom burden. Little is known about the frequency and severity of symptoms over time, so we longitudinally characterized patients’ symptoms using the Patient Care Monitor (PCM) version 2.0, an electronic symptom-assessment tool.

Methods

Ninety-seven patients with aNSCLC completed the PCM at up to four clinic visits. We analyzed symptom data by incidence, severity, type (functional vs. nonfunctional), proximity to death, and cancer anorexia-cachexia syndrome status (CACS).

Results

Functional concerns predominated, even in the non-CACS group. Average severity among the top 5 symptoms was worse for functional than nonfunctional items (mean difference 0.62, 95 % CI 0.22–1.01, P = 0.003). Severe dyspnea and fatigue were the most prevalent nonfunctional symptoms; moderate/severe dyspnea was reported by at least 29 % of patients, and fatigue by over 50 %. Depression was reported infrequently, with over half of patients at each visit reporting “none”; moderate or severe depression was reported in only 2.5–9.3 and 3.4–6.2 % of patients, respectively. The average number of moderate/severe symptoms increased with proximity to death; 84 % reported moderate/severe fatigue in the last 3 months of life, compared to 48 % at ≥12 months from death (P = 0.007).

Conclusions

Patients with aNSCLC face a significant symptom burden, which increases with proximity to death. Symptom type and severity vary by proximity to death, but even patients without overt CACS report significant functional symptoms throughout. We recommend an individualized approach to palliative symptom intervention in advanced lung cancer, based on detailed symptom assessment and tracking.

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Acknowledgments

These data were presented in poster form at the MASCC annual congress in Miami, FL, June 26th–28th, 2014. The authors acknowledge the assistance of Donald T. Kirkendall, Ph.D., ELS, for his help in preparing this paper for submission.

Conflict of interest

Dr. LeBlanc is a recipient of a Junior Career Development Award from the National Palliative Care Research Center (NPCRC) and has received research support (paid to Duke University Medical Center) from Celgene and Helsinn Therapeutics and honoraria from Helsinn (<$5000). Dr. Abernethy has research funding DARA Biosciences, Glaxo Smith Kline, Celgene, Helsinn Therapeutics, Dendreon, Kanglaite, Bristol-Myers Squibb, and Pfizer, as well as federal sources (NINR U24-NR-14637-02; these funds are all distributed to Duke University Medical Center to support research including salary support for Dr. Abernethy). Pending industry-funded projects include the following: Galena Biopharma and Insys Therapeutics. She has consulting agreements with or received honoraria from Novartis, from Pfizer (>$5000 annually), and from Bristol-Myers Squibb (>$5000 annually). Dr. Abernethy has corporate leadership responsibility in Flatiron Health Inc (health information technology [HIT] company; Chief Medical Officer and Senior Vice President), athenahealth Inc (HIT company; Director), Advoset LLC (education company; Owner), and Orange Leaf Associates LLC (IT development company; Owner). Drs. Locke and Samsa have no disclosures or conflicts of interest to report.

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Authors and Affiliations

  1. Division of Hematologic Malignancies and Cellular Therapy, Duke University School of Medicine, Durham, NC, USA

    Thomas W. LeBlanc

  2. Center for Learning Health Care, Duke Clinical Research Institute, Durham, NC, USA

    Thomas W. LeBlanc, Susan C. Locke & Amy P. Abernethy

  3. Department of Medicine, Duke University Medical Center, Durham, NC, USA

    Myles Nickolich

  4. Department of Bioinformatics and Biostatistics, Duke University Medical Center, 2400 Pratt Street, Suite 9000, Durham, NC, 27705, USA

    Christel N. Rushing & Gregory P. Samsa

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  1. Thomas W. LeBlanc
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  2. Myles Nickolich
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  3. Christel N. Rushing
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  4. Gregory P. Samsa
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  5. Susan C. Locke
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  6. Amy P. Abernethy
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Corresponding author

Correspondence to Thomas W. LeBlanc.

Additional information

Dr. Thomas W. LeBlanc holds MD and MA degrees, Duke University School of Medicine.

Myles Nickolich holds a MD degree, Duke University Medical Center.

Christel N. Rushing holds a MS degree, Duke University Medical Center.

Gregory P. Samsa holds a PhD degree, Duke University Medical Center.

Susan C. Locke holds a PhD degree, Duke Clinical Research Institute.

Amy P. Abernethy holds MD and PhD degrees, Duke Clinical Research Institute.

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LeBlanc, T.W., Nickolich, M., Rushing, C.N. et al. What bothers lung cancer patients the most? A prospective, longitudinal electronic patient-reported outcomes study in advanced non-small cell lung cancer. Support Care Cancer 23, 3455–3463 (2015). https://doi.org/10.1007/s00520-015-2699-4

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  • DOI: https://doi.org/10.1007/s00520-015-2699-4

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