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The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors

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Abstract

Purpose

We examined cancer survivors’ experience of bothersome symptoms, association of symptom bother with health-related quality of life (HRQOL), survivors’ perception of symptom care, and their symptom-related information needs.

Methods

Using self-report survey measures, survivors of leukemia, bladder, or colorectal cancer who were 2–5 years post-diagnosis and received follow-up care in the past year (N = 623) provided information about the presence of bothersome symptoms, symptom-related information needs, adequacy of symptom-related care, and their physical and mental HRQOL. Multivariable statistical analyses were conducted to identify correlates of symptom bother, inadequate care, and symptom information needs and to examine the association between symptom bother and HRQOL.

Results

Twenty-eight percent of the 606 respondents experienced symptom bother in the past year (46 % of leukemia, 24 % of bladder, and 26 % of colorectal cancer survivors). Younger survivors, those of Hispanic ethnicity, with low income, those with recurrent cancer, and chemotherapy recipients were more likely to report symptom bother (all p < 0.05). Symptom bother was associated with lower physical and mental HRQOL (p < 0.001). While 92 % of survivors with symptoms discussed them with their follow-up care physician, 52 % of these reported receiving inadequate symptom care. Survivors reporting inadequate symptom care were 2.5 times as likely to identify symptom information needs compared to those who received adequate care (p < 0.05).

Conclusions

One in four cancer survivors report symptoms 2–5 years post-diagnosis, and only half of these survivors receive adequate care to address those symptoms. Research that refines and tests symptom care interventions for this population is warranted.

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References

  1. Alvarez A, Walsh D (2011) Symptom control in advanced cancer: twenty principles. Am J Hosp Palliat Care 28:203–207

    Article  PubMed  Google Scholar 

  2. Arora NK, Reeve BB, Hays RD, Clauser SB, Oakley-Girvan I (2011) Assessment of quality of cancer-related follow-up care from the cancer survivor’s perspective. J Clin Oncol 29:1280–1289

    Article  PubMed  Google Scholar 

  3. Ayanian JZ, Zaslavsky AM, Arora NK, Kahn KL, Malin JL, Ganz PA, van Ryn M, Hornbrook MC, Kiefe CI, He Y, Urmie JM, Weeks JC, Harrington DP (2010) Patients’ experiences with care for lung cancer and colorectal cancer: findings from the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol 28:4154–4161

    Article  PubMed  Google Scholar 

  4. Basch EM, Reeve BB, Mitchell SA, Clauser SB, Minasian L, Sit L, Chilukuri R, Baumgartner P, Rogak L, Blauel E, Abernethy AP, Bruner D (2011) Electronic toxicity monitoring and patient-reported outcomes. Cancer J 17:231–234

    Article  PubMed  Google Scholar 

  5. Beckjord EB, Arora NK, McLaughlin W, Oakley-Girvan I, Hamilton AS, Hesse BW (2008) Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. J Cancer Surviv 2:179–189

    Article  PubMed  Google Scholar 

  6. Berger AM, Visovsky C, Hertzog M, Holtz S, Loberiza FR Jr (2012) Usual and worst symptom severity and interference with function in breast cancer survivors. J Support Oncol 10:112–118

    Article  PubMed  Google Scholar 

  7. Bock M, Moore D, Hwang J, Shumay D, Lawson L, Hamolsky D, Esserman L, Rugo H, Chien AJ, Park J, Munster P, Melisko M (2012) The impact of an electronic health questionnaire on symptom management and behavior reporting for breast cancer survivors. Breast Cancer Res Treat 134:1327–1335

    Article  PubMed  Google Scholar 

  8. Brant JM, Beck S, Dudley WN, Cobb P, Pepper G, Miaskowski C (2011) Symptom trajectories in posttreatment cancer survivors. Cancer Nurs 34:67–77

    Article  PubMed  Google Scholar 

  9. Breuer B, Fleishman SB, Cruciani RA, Portenoy RK (2011) Medical oncologists’ attitudes and practice in cancer pain management: a national survey. J Clin Oncol 29:4769–4775

    Article  PubMed  Google Scholar 

  10. Burkett VS, Cleeland CS (2007) Symptom burden in cancer survivorship. J Cancer Surviv 1:167–175

    Article  PubMed  Google Scholar 

  11. Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, Ader D, Fries JF, Bruce B, Rose M, Group PC (2007) The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care 45:S3–S11

    Article  PubMed  Google Scholar 

  12. Cheng KKF, Thompson DR, Ling WM, Chan CWH (2005) Measuring symptom prevalence, severity and distress of cancer survivors. Clin Eff Nurs 9:154–160

    Article  Google Scholar 

  13. Clayton MF, Dudley WN (2009) Patient-centered communication during oncology follow-up visits for breast cancer survivors: content and temporal structure. Oncol Nurs Forum 36:E68–E79

    Article  PubMed  Google Scholar 

  14. Davis MP, Kirkova J (2008) Lifting symptom burden–how far off the ground are we? Support Care Cancer 16:757–761

    Article  PubMed  Google Scholar 

  15. Deshields TL, Potter P, Olsen S, Liu J, Dye L (2011) Documenting the symptom experience of cancer patients. J Support Oncol 9:216–223

    Article  PubMed  Google Scholar 

  16. Earle CC (2006) Failing to plan is planning to fail: improving the quality of care with survivorship care plans. J Clin Oncol 24:5112–5116

    Article  PubMed  Google Scholar 

  17. Feuerstein M, Bruns GL, Pollman C, Todd BL (2010) Management of unexplained symptoms in survivors of cancer. J Oncol Pract 6:308–311

    Article  PubMed  Google Scholar 

  18. Fu OS, Crew KD, Jacobson JS, Greenlee H, Yu G, Campbell J, Ortiz Y, Hershman DL (2009) Ethnicity and persistent symptom burden in breast cancer survivors. J Cancer Surviv 3:241–250

    Article  PubMed  Google Scholar 

  19. Griffiths J, Willard C, Burgess A, Amir Z, Luker K (2007) Meeting the ongoing needs of survivors of rarer cancer. Eur J Oncol Nurs 11:434–441

    Article  PubMed  Google Scholar 

  20. Grunfeld E, Earle CC (2010) The interface between primary and oncology specialty care: treatment through survivorship. J Natl Cancer Inst Monogr 2010:25–30

    Article  PubMed  Google Scholar 

  21. Hays RD, Farivar SS, Liu H (2005) Approaches and recommendations for estimating minimally important differences for health-related quality of life measures. COPD 2:63–67

    Article  PubMed  Google Scholar 

  22. Heins MJ, Korevaar JC, Rijken PM, Schellevis FG (2012) For which health problems do cancer survivors visit their General Practitioner?. Eur J Cancer

  23. Henningsohn L, Wijkstrom H, Pedersen J, Ahlstrand C, Aus G, Bergmark K, Onelov E, Steineck G (2003) Time after surgery, symptoms and well-being in survivors of urinary bladder cancer. BJU Int 91:325–330

    Article  PubMed  CAS  Google Scholar 

  24. Hudson SV, Miller SM, Hemler J, Ferrante JM, Lyle J, Oeffinger KC, Dipaola RS (2012) Adult cancer survivors discuss follow-up in primary care: ‘not what i want, but maybe what i need’. Ann Fam Med 10:418–427

    Article  PubMed  Google Scholar 

  25. Kent EE, Arora NK, Rowland JH, Bellizzi KM, Forsythe LP, Hamilton AS, Oakley-Girvan I, Beckjord EB, Aziz NM (2012) Health information needs and health-related quality of life in a diverse population of long-term cancer survivors. Patient Educ Couns 89:345–352

    Article  PubMed  Google Scholar 

  26. Laugsand EA, Jakobsen G, Kaasa S, Klepstad P (2011) Inadequate symptom control in advanced cancer patients across Europe. Support Care Cancer 19:2005–2014

    Article  PubMed  Google Scholar 

  27. Lee CT, Mei M, Ashley J, Breslow G, O’Donnell M, Gilbert S, Lemmy S, Saxton C, Sagalowsky A, Sansgiry S, Latini DM (2012) Patient resources available to bladder cancer patients: a pilot study of healthcare providers. Urology 79:172–177

    Article  PubMed  Google Scholar 

  28. Lee YH, Chiou PY, Chang PH, Hayter M (2011) A systematic review of the effectiveness of problem-solving approaches towards symptom management in cancer care. J Clin Nurs 20:73–85

    Article  PubMed  CAS  Google Scholar 

  29. Lerman R, Jarski R, Rea H, Gellish R, Vicini F (2012) Improving symptoms and quality of life of female cancer survivors: a randomized controlled study. Ann Surg Oncol 19:373–378

    Article  PubMed  Google Scholar 

  30. Lobb EA, Joske D, Butow P, Kristjanson LJ, Cannell P, Cull G, Augustson B (2009) When the safety net of treatment has been removed: patients’ unmet needs at the completion of treatment for haematological malignancies. Patient Educ Couns 77:103–108

    Article  PubMed  CAS  Google Scholar 

  31. McDougall GJ, Becker H, Acee TW, Vaughan PW, Delville CL (2011) Symptom management of affective and cognitive disturbance with a group of cancer survivors. Arch Psychiatr Nurs 25:24–35

    Article  PubMed  Google Scholar 

  32. Minasian LM, O’Mara AM, Reeve BB, Denicoff AM, Kelaghan J, Rowland JH, Trimble EL (2007) Health-related quality of life and symptom management research sponsored by the National Cancer Institute. J Clin Oncol 25:5128–5132

    Article  PubMed  Google Scholar 

  33. Mishra SI, Scherer RW, Geigle PM, Berlanstein DR, Topaloglu O, Gotay CC, Snyder C (2012) Exercise interventions on health-related quality of life for cancer survivors. Cochrane Database Syst Rev 8, CD007566

  34. Pan LH, Tsai YF, Chen ML, Tang R, Chang CJ (2011) Symptom distress and self-care strategies of colorectal cancer patients with diarrhea up to 3 months after surgery. Cancer Nurs 34:E1–E9

    Article  PubMed  Google Scholar 

  35. Schneider EC, Malin JL, Kahn KL, Ko CY, Adams J, Epstein AM (2007) Surviving colorectal cancer : patient-reported symptoms 4 years after diagnosis. Cancer 110:2075–2082

    Article  PubMed  Google Scholar 

  36. Schumacher A, Wewers D, Heinecke A, Sauerland C, Koch OM, van de Loo J, Buchner T, Berdel WE (2002) Fatigue as an important aspect of quality of life in patients with acute myeloid leukemia. Leukemia Research 26:355–362

    Article  PubMed  Google Scholar 

  37. Shi Q, Smith TG, Michonski JD, Stein KD, Kaw C, Cleeland CS (2011) Symptom burden in cancer survivors 1 year after diagnosis: a report from the American Cancer Society’s Studies of Cancer Survivors. Cancer 117:2779–2790

    Article  PubMed  Google Scholar 

  38. Snyder CF, Blackford AL, Wolff AC, Carducci MA, Herman JM, Wu AW (2012) Feasibility and value of PatientViewpoint: a web system for patient-reported outcomes assessment in clinical practice Psychooncology

  39. Stein KD, Syrjala KL, Andrykowski MA (2008) Physical and psychological long-term and late effects of cancer. Cancer 112:2577–2592

    Article  PubMed  Google Scholar 

  40. Thorne SE, Hislop TG, Armstrong EA, Oglov V (2008) Cancer care communication: the power to harm and the power to heal? Patient Educ Couns 71:34–40

    Article  PubMed  Google Scholar 

  41. Ware JE Jr, Kosinski M, Dewey JE (2000) How to Score Version Two of the SF-36 Health Survey. QualityMetric Incorporated, Lincoln, RI

    Google Scholar 

  42. Ware JE Jr, Sherbourne CD (1992) The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30:473–483

    Article  PubMed  Google Scholar 

  43. Watanabe SM, Nekolaichuk CL, Beaumont C (2012) The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: development and refinement. Psychooncology 21:977–985

    Article  PubMed  Google Scholar 

  44. Wikman A, Djarv T, Johar A, Lagergren L (2012) Health-related quality of life does not differ between short-term, long-term and very long-term cancer survivors in the Swedish general population Psycho-Oncology

  45. Yeom HE, Heidrich SM (2009) Effect of perceived barriers to symptom management on quality of life in older breast cancer survivors. Cancer Nurs 32:309–316

    Article  PubMed  Google Scholar 

  46. Zucca AC, Boyes AW, Linden W, Girgis A (2012) All’s well that ends well? Quality of life and physical symptom clusters in long-term cancer survivors across cancer types. J Pain Symptom Manage 43:720–731

    Article  PubMed  Google Scholar 

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Disclaimer

Findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute. There are no financial disclosures.

Funding

Support for data collection was provided by the National Cancer Institute (Contract No. N01-PC-35136) as a contract to the Cancer Prevention Institute of California (formerly known as the Northern California Cancer Center).

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Authors and Affiliations

  1. Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Science, National Cancer Institute, 9609 Medical Center Drive, Rockville, MD, 20850, USA

    Erin E. Kent, Sandra A. Mitchell & Neeraj K. Arora

  2. Cancer Prevention Institute of California, 2201 Walnut Avenue Suite 300, Fremont, CA, 94538, USA

    Ingrid Oakley-Girvan

Authors
  1. Erin E. Kent
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  2. Sandra A. Mitchell
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  3. Ingrid Oakley-Girvan
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  4. Neeraj K. Arora
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Correspondence to Erin E. Kent.

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Kent, E.E., Mitchell, S.A., Oakley-Girvan, I. et al. The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors. Support Care Cancer 22, 163–172 (2014). https://doi.org/10.1007/s00520-013-1961-x

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  • DOI: https://doi.org/10.1007/s00520-013-1961-x

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