Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
Journal of Cancer Survivorship
Published in: Journal of Cancer Survivorship 2/2007

01-06-2007

Symptom burden in cancer survivorship

Authors: V. Shannon Burkett, Charles S. Cleeland

Published in: Journal of Cancer Survivorship | Issue 2/2007

Login to get access

Abstract

Introduction

The subjective experience of cancer survivorship can be assessed by various patient-reported outcome (PRO) methods, including measures of symptom burden and health-related quality of life (HRQOL). Symptom burden includes the presence and severity of multiple symptoms and the level of distress caused by symptoms that go untreated or unrelieved. The concept of symptom burden is more limited in scope than HRQOL but may provide information that better describes the status of various stages of survivorship. This paper contrasts symptom burden with general HRQOL and addresses the importance of including symptom burden as research tool throughout the trajectory of cancer survivorship.

Methods

We summarized studies that illustrate both HRQOL and symptoms as outcomes of treatment and of descriptive studies of cancer survivorship. Survivorship was operationally defined as beginning at the completion of primary anticancer treatment.

Results

HRQOL and symptom burden measures both provide meaningful but conceptually different data. Both types of measures are important in portraying aspects of cancer survivorship over time, although symptom burden may provide sufficient information to inform treatment decisions and identify long-term effects of cancer therapies.

Conclusions

Cancer survivors are at risk for multiple severe and persistent symptoms, and assessing and monitoring the severity and impact of these multiple symptoms is critical to understanding the survivorship experience. The inclusion of multiple symptom measures along with the development of new and better methods of long-term symptom tracking in survivors is a critical step in improving the heath status of survivors.

Implications for cancer survivors

Late and long-term effects seen in cancer survivors have historically been understudied. Symptom burden is an important area of assessment that can be used to specifically describe the symptoms that distress survivors. More descriptive data in this growing population may help identify biological processes in symptom production and maintenance, and facilitate in the development of better treatment and prevention to enhance cancer survivorship.
Literature
1.
Alfano, C. M., McGregor, B. A., Kuniyuki, A., Reeve, B. B., Bowen, D. J., Baumgartner, K. B., et al. (2006). Psychometric properties of a tool for measuring hormone-related symptoms in breast cancer survivors. Psychooncology, 15(11), 985–1000.PubMedCrossRef
2.
Antoni, M. H., Lehman, J. M., Kilbourn, K. M., Boyers, A. E., Culver, J. L., Alferi, S. M., et al. (2001). Cognitive-behavioral stress management intervention decreases the prevalence of depression and enhances benefit finding among women under treatment for early-stage breast cancer. Health Psychology, 20(1), 20–32.PubMedCrossRef
3.
Ashing-Giwa, K. T. (2005). The contextual model of HRQoL: A paradigm for expanding the HRQoL framework. Quality of Life Research, 14(2), 297–307.PubMedCrossRef
4.
Aziz, N. M. (2002). Cancer survivorship research: Challenge and opportunity. Journal of Nutrition, 132(11 Suppl), 3494S–3503S.
5.
Bailey, R. K., Geyen, D. J., Scott-Gurnell, K., Hipolito, M. M., Bailey, T. A., & Beal, J. M. (2005). Understanding and treating depression among cancer patients. International Journal of Gynecological Cancer, 15(2), 203–208.PubMedCrossRef
6.
Barsevick, A. M., Whitmer, K., Nail, L. M., Beck, S. L., & Dudley, W. N. (2006). Symptom cluster research: Conceptual, design, measurement, and analysis issues. Journal of Pain and Symptom Management, 31(1), 85–95.PubMedCrossRef
7.
Bender, C. M., Ergyn, F. S., Rosenzweig, M. Q., Cohen, S. M., & Sereika, S. M. (2005). Symptom clusters in breast cancer across 3 phases of the disease. Cancer Nursing, 28(3), 219–225.PubMedCrossRef
8.
Borgaonkar, M. R., & Irvine, E. J. (2000). Quality of life measurement in gastrointestinal and liver disorders. Gut, 47(3), 444–454.PubMedCrossRef
9.
Bottomley, A., Flechtner, H., Efficace, F., Vanvoorden, V., Coens, C., Therasse, P., et al. (2005). Health related quality of life outcomes in cancer clinical trials. European Journal of Cancer, 41(12), 1697–1709.PubMedCrossRef
10.
Bruera, E., Kuehn, N., Miller, M. J., Selmser, P., & Macmillan, K. (1991). The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. Journal of Palliative Care, 7(2), 6–9.PubMed
11.
Buchanan, D. R., O’Mara, A. M., Kelaghan, J. W., & Minasian, L. M. (2005). Quality-of-life assessment in the symptom management trials of the National Cancer Institute-supported Community Clinical Oncology Program. Journal of Clinical Oncology, 23(3), 591–598.PubMedCrossRef
12.
Bush, N. E., Haberman, M., Donaldson, G., & Sullivan, K. M. (1995). Quality of life of 125 adults surviving 6–18 years after bone marrow transplantation. Social Science & Medicine, 40(4), 479–490.CrossRef
13.
Cella, D., Davis, K., Breitbart, W., & Curt, G. (2001). Cancer-related fatigue: Prevalence of proposed diagnostic criteria in a United States sample of cancer survivors. Journal of Clinical Oncology, 19(14), 3385–3391.PubMed
14.
Chang, V. T., Hwang, S. S., Kasimis, B., & Thaler, H. T. (2004). Shorter symptom assessment instruments: The Condensed Memorial Symptom Assessment Scale (CMSAS). Cancer Invest, 22(4), 526–536.PubMedCrossRef
15.
Cleeland, C. S. (2001). Cancer-related fatigue: New directions for research. Introduction. Cancer, 92(6 Suppl), 1657–1661.PubMedCrossRef
16.
Cleeland, C. S. (2007). Symptom burden: Multiple symptoms and their impact as patient-reported outcomes. Journal of the National Cancer Institute, (in press).
17.
Cleeland, C. S., Bennett, G. J., Dantzer, R., Dougherty, P. M., Dunn, A. J., Meyers, C. A., et al. (2003). Are the symptoms of cancer and cancer treatment due to a shared biologic mechanism? A cytokine-immunologic model of cancer symptoms. Cancer, 97(11), 2919–2925.PubMedCrossRef
18.
Cleeland, C. S., Mendoza, T. R., Wang, X. S., Chou, C., Harle, M. T., Morrissey, M., et al. (2000). Assessing symptom distress in cancer patients: the M.D. Anderson Symptom Inventory. Cancer, 89(7), 1634–1646.PubMedCrossRef
19.
Cleeland C. S., & Reyes-Gibby, C. C. (2002). When is it justified to treat symptoms? Measuring symptom burden. Oncology (Williston.Park), 16(9 Suppl 10), 64–70.
20.
De Boer, A. G., Genovesi, P. I., Sprangers, M. A., Van Sandick, J. W., Obertop, H., & Van Lanschot, J. J. (2000). Quality of life in long-term survivors after curative transhiatal oesophagectomy for oesophageal carcinoma. British Journal of Surgery, 87(12), 1716–1721.PubMedCrossRef
21.
De Haes, J. C. (1988). Quality of life: Conceptual and theoretical considerations. In M. Watson, S. Greer, & C. Thomas (Eds.), Psychosocial oncology (pp. 61–70). Oxford: Pergamon.
22.
De Haes, J. C., Van Knippenberg, F. C., & Neijt, J. P. (1990). Measuring psychological and physical distress in cancer patients: Structure and application of the Rotterdam Symptom Checklist. British Journal of Cancer, 62(6), 1034–1038.PubMed
23.
Dodd, M. J., Miaskowski, C., & Paul, S. M. (2001). Symptom clusters and their effect on the functional status of patients with cancer. Oncology Nursing Forum, 28(3), 465–470.PubMed
24.
Donnelly, S., Walsh, D., & Rybicki, L. (1995). The symptoms of advanced cancer: Identification of clinical and research priorities by assessment of prevalence and severity. Journal Of Palliative Care, 11(1), 27–32.PubMed
25.
Fallowfield, L., Cella, D., Cuzick, J., Francis, S., Locker, G., & Howell, A. (2004). Quality of life of postmenopausal women in the Arimidex, Tamoxifen, alone or in Combination (ATAC) Adjuvant Breast Cancer Trial. Journal of Clinical Oncology, 22(21), 4261–4271.PubMedCrossRef
26.
Fossa, S. D., Dahl, A. A., & Haaland, C. F. (1999). Health-related quality of life in patients treated for testicular cancer. British Journal of Cancer, 9(5), 425–429.
27.
Ganz, P. A. (2001). Late effects of cancer and its treatment. Seminars in Oncology Nursing, 17(4), 241–248.PubMedCrossRef
28.
Ganz, P. A. (2006). Monitoring the physical health of cancer survivors: A survivorship-focused medical history. Journal of Clinical Oncology, 24(32), 5105–5111.PubMedCrossRef
29.
Ganz, P. A., Coscarelli, A., Fred, C., Kahn, B., Polinsky, M. L., & Petersen, L. (1996). Breast cancer survivors: Psychosocial concerns and quality of life. Breast Cancer Research and Treatment, 38(2), 183–199.PubMedCrossRef
30.
Ganz, P. A., Kwan, L., Stanton, A. L., Krupnick, J. L., Rowland, J. H., Meyerowitz, B. E., et al. (2004). Quality of life at the end of primary treatment of breast cancer: First results from the moving beyond cancer randomized trial. Journal of the National Cancer Institute, 96(5), 376–387.PubMedCrossRef
31.
Ganz, P. A., Rowland, J. H., Meyerowitz, B. E., & Desmond, K. A. (1998). Impact of different adjuvant therapy strategies on quality of life in breast cancer survivors. Recent Results in Cancer Research, 152, 396–411.PubMed
32.
Gaston-Johansson, F., Fall-Dickson, J. M., Bakos, A. B., & Kennedy, M. J. (1999). Fatigue, pain, and depression in pre-autotransplant breast cancer patients. Cancer Practice, 7(5), 240–247.PubMedCrossRef
33.
Grond, S., Zech, D., Diefenbach, C., & Bischoff, A. (1994). Prevalence and pattern of symptoms in patients with cancer pain: a prospective evaluation of 1635 cancer patients referred to a pain clinic. Journal of Pain and Symptom Management, 9(6), 372–382.PubMedCrossRef
34.
Grothey, A. (2005). Clinical management of oxaliplatin-associated neurotoxicity. Clinical Colorectal Cancer, 5 Suppl 1, S38–S46.CrossRef
35.
36.
Hammerlid, E., Silander, E., Hornestam, L., & Sullivan, M. (2001). Health-related quality of life three years after diagnosis of head and neck cancer-a longitudinal study. Head and Neck, 23(2), 113–125.PubMedCrossRef
37.
Hammerlid, E., & Taft, C. (2001). Health-related quality of life in long-term head and neck cancer survivors: A comparison with general population norms. British Journal of Cancer, 84(2), 149–156.PubMedCrossRef
38.
Hart, B. L. (1988). Biological basis of the behavior of sick animals. Neuroscience and Biobehavioral Reviews, 12(2), 123–137.PubMedCrossRef
39.
Hewitt, M. E., Greenfield, S., Stovall, E. (Eds.) (2005). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies Press.
40.
Huguenin, P. U., Taussky, D., Moe, K., Meister, A., Baumert, B., Lutolf, U. M., et al. (1999). Quality of life in patients cured from a carcinoma of the head and neck by radiotherapy: The importance of the target volume. International Journal of Radiation Oncology, Biology, Physics, 45(1), 47–52.PubMedCrossRef
41.
Kelley, K. W., Bluthe, R. M., Dantzer, R., Zhou, J. H., Shen, W. H., Johnson, R. W., et al. (2003). Cytokine-induced sickness behavior. Brain, Behavior, and Immunity, 17 Suppl 1, S112–S118.CrossRef
42.
Kent, S., Bluthe, R. M., Kelley, K. W., & Dantzer, R. (1992). Sickness behavior as a new target for drug development. Trends in Pharmacological Sciences, 13(1), 24–28.PubMedCrossRef
43.
Kim, H. J., McGuire, D. B., Tulman, L., & Barsevick, A. M. (2005). Symptom clusters: Concept analysis and clinical implications for cancer nursing. Cancer Nursing, 28(4), 270–282.PubMedCrossRef
44.
Kirkova, J., Davis, M. P., Walsh, D., Tiernan, E., O'Leary, N., LeGrand, S. B., et al. (2006). Cancer symptom assessment instruments: A systematic review. Journal of Clinical Oncology, 24(9), 1459–1473.PubMedCrossRef
45.
Klinkenberg, M., Willems, D. L., van der, W. G., & Deeg, D. J. (2004). Symptom burden in the last week of life. Journal of Pain and Symptom Management, 27(1), 5–13.PubMedCrossRef
46.
Kurzrock, R. (2001). The role of cytokines in cancer-related fatigue. Cancer, 92(6 Suppl), 1684–1688.PubMedCrossRef
47.
Lee, B. N., Dantzer, R., Langley, K. E., Bennett, G. J., Dougherty, P. M., Dunn, A. J., et al. (2004). A cytokine-based neuroimmunologic mechanism of cancer-related symptoms. Neuroimmunomodulation, 11(5), 279–292.PubMedCrossRef
48.
Miaskowski, C., Dodd, M., & Lee, K. (2004). Symptom clusters: the new frontier in symptom management research. Journal of the National Cancer Institute. Monographs, 32, 17–21.
49.
Miaskowski, C., & Lee, K. A. (1999). Pain, fatigue, and sleep disturbances in oncology outpatients receiving radiation therapy for bone metastasis: A pilot study. Journal of Pain and Symptom Management, 17(5), 320–332.PubMedCrossRef
50.
Mols, F., Vingerhoets, A. J., Coebergh, J. W., & van de Poll-Franse L. V. (2005). Quality of life among long-term breast cancer survivors: A systematic review. European Journal of Cancer, 41(17), 2613–2619.PubMedCrossRef
51.
Paice, J. A. (2004). Assessment of symptom clusters in people with cancer. Journal of the National Cancer Institute. Monographs, 32, 98–102.
52.
Patrick, D. L., Ferketich, S. L., Frame, P. S., Harris, J. J., Hendricks, C. B., Levin, B., et al. (2004). National Institutes of Health State-of-the-Science Conference Statement: Symptom management in cancer: Pain, depression, and fatigue, July 15–17, 2002. Journal of the National Cancer Institute. Monographs, 32, 9–16.
53.
Portenoy, R. K., Thaler, H. T., Kornblith, A. B., Lepore, J. M., Friedlander-Klar, H., Kiyasu, E., et al. (1994). The Memorial Symptom Assessment Scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer, 30A(9), 1326–1336.PubMedCrossRef
54.
Rauch, P., Miny, J., Conroy, T., Neyton, L., & Guillemin, F. (2004). Quality of life among disease-free survivors of rectal cancer. Journal of Clinical Oncology, 22(2), 354–360.PubMedCrossRef
55.
Reyes-Gibby, C. C., Aday, L. A., Anderson, K. O., Mendoza, T. R., & Cleeland, C. S. (2006). Pain, depression, and fatigue in community-dwelling adults with and without a history of cancer. Journal of Pain and Symptom Management, 32(2), 118–128.PubMedCrossRef
56.
Ross, J. R., Goller, K., Hardy, J., Riley, J., Broadley, K., A’hern, R., et al. (2005). Gabapentin is effective in the treatment of cancer-related neuropathic pain: A prospective, open-label study. Journal of Palliative Medicine, 8(6), 1118–1126.PubMedCrossRef
57.
Rudberg, L., Carlsson, M., Nilsson, S., & Wikblad, K. (2002). Self-perceived physical, psychologic, and general symptoms in survivors of testicular cancer 3 to 13 years after treatment. Cancer Nursing, 25(3), 187–195.PubMedCrossRef
58.
Schwartz, C. E., & Sprangers, M. A. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science & Medicine, 48(11), 1531–1548.CrossRef
59.
Silveira, M. J., Kabeto, M. U., & Langa, K. M. (2005). Net worth predicts symptom burden at the end of life. Journal of Palliative Medicine, 8(4), 827–837.PubMedCrossRef
60.
Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science & Medicine, 48(11), 1507–1515.CrossRef
61.
Steineck, G., Bergmark, K., Henningsohn, L., al-Abany, M., Dickman, P. W., & Helgason, A. (2002). Symptom documentation in cancer survivors as a basis for therapy modifications. Acta Oncologica, 41(3), 244–252.PubMedCrossRef
62.
Valentine, A. D., & Meyers, C. A. (2001). Cognitive and mood disturbance as causes and symptoms of fatigue in cancer patients. Cancer, 92(6 Suppl), 1694–1698.PubMedCrossRef
63.
Van Weert, E., Hoekstra-Weebers, J., Grol, B., Otter, R., Arendzen, H. J., Postema, K., et al. (2005). A multidimensional cancer rehabilitation program for cancer survivors: Effectiveness on health-related quality of life. Journal of Psychosomatic Research, 58(6), 485–496.PubMedCrossRef
64.
Wang, X. S., Fairclough, D. L., Liao, Z., Komaki, R., Chang, J. Y., Mobley, G. M., et al. (2006). Longitudinal study of the relationship between chemoradiation therapy for non-small-cell lung cancer and patient symptoms. Journal of Clinical Oncology, 24(27), 4485–4491.PubMedCrossRef
65.
Webster’s Third New International Dictionary of the English Language, U. (1966). (15th ed.) Springfield, MA: Merriam.
66.
Zambroski, C. H., Moser, D. K., Bhat, G., & Ziegler, C. (2005). Impact of symptom prevalence and symptom burden on quality of life in patients with heart failure. European Journal of Cardiovascular Nursing, 4(3), 198–206.PubMedCrossRef
Metadata
Title
Symptom burden in cancer survivorship
Authors
V. Shannon Burkett
Charles S. Cleeland
Publication date
01-06-2007
Published in
Journal of Cancer Survivorship / Issue 2/2007
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-007-0017-y

Other articles of this Issue 2/2007

Journal of Cancer Survivorship 2/2007 Go to the issue

OriginalPaper

Physical activity, long-term symptoms, and physical health-related quality of life among breast cancer survivors: A prospective analysis

OriginalPaper

Health and supportive care needs of young adult cancer patients and survivors

OriginalPaper

Short term correlates of the Neuro Emotional Technique for cancer-related traumatic stress symptoms: A pilot case series

OriginalPaper

Return to paid work after cancer: A British experience

OriginalPaper

Diabetes mellitus among cancer survivors

OriginalPaper

Mental health service utilization among long-term cancer survivors
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine
Image Credits