Advertisement

Gaps in communication between cancer patients and healthcare providers: symptom distress and patients’ intentions to disclose

  • Valentina Penalba
  • Teresa L. Deshields
  • Dean Klinkenberg
Original Article

Abstract

Purpose

Good communication between patients and healthcare professionals (HCPs) is an important contributor to patient well-being. Few studies have focused on the gaps in communication between patients and HCPs about symptoms. This study examined patients’ perspectives on symptom distress, intention to discuss symptoms, and actual symptom discussion in medical oncology visits.

Methods

This was a cross-sectional descriptive study. Ninety-four patients provided demographic and clinical information and completed the Memorial Symptom Assessment Scale. Patients also answered questions about their plans for communication—and after the visit, their actual communication—with their medical team about their symptoms.

Results

Patients reported many symptoms by questionnaire; however, they did not plan to discuss—nor actually discussed—most of their symptoms with their HCPs. For all symptoms, fewer than 42% of patients with the symptom intended to discuss it (except for lack of energy and pain) and less than 50% actually discussed the symptom. For bothersome symptoms, less than 42% of those with the symptom intended to discuss it (except for lack of energy) and less than 40% actually discussed the symptom. Psychological symptoms were endorsed by 24–41% of patients, depending on the symptom; however, of those endorsing a symptom, most did not discuss it with an HCP.

Conclusions

Results of this study support the perception of communication gaps between patients and HCPs about symptoms. Better understanding of these gaps is needed to ensure that patient-centered care is delivered and that patients’ symptoms can be appropriately managed in oncology clinics.

Keywords

Memorial Symptom Assessment Survey Cancer patients Medical communication Symptom reporting Symptom bother 

Notes

Acknowledgments

The authors wish to thank Michele Medici, Cassandra Arroyo, and patients at Siteman Cancer Center for their contributions to this project.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

References

  1. 1.
    Ofri D (2017) What patients say, what doctors hear. Beacon PressGoogle Scholar
  2. 2.
    Ong LM, Visser MR, Lammes FB, De Haes JC (2000) Doctor–patient communication and cancer patients’ quality of life and satisfaction. Patient Educ Couns 41(2):145–156.  https://doi.org/10.1016/S0738-3991(99)00108-1 CrossRefPubMedGoogle Scholar
  3. 3.
    Tongue JR, Epps HR, Forese LL (2005) Communication skills for patient-centered care: research-based, easily learned techniques for medical interviews that benefit orthopedic surgeons and their patients. J Bone Joint Surg Am 87:652–658.  https://doi.org/10.2106/JBJS.D.03035 CrossRefGoogle Scholar
  4. 4.
    McWilliam CL, Brown JB, Stewart M (2000) Breast cancer patients’ experiences of patient–doctor communication: a working relationship. Patient Educ Couns 39(2):191–204.  https://doi.org/10.1016/S0738-3991(99)00040-3 CrossRefPubMedGoogle Scholar
  5. 5.
    Barry CA, Stevenson FA, Britten N, Barber N, Bradley CP (2001) Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor–patient communication in general practice. Soc Sci Med 53(4):487–505.  https://doi.org/10.1016/S0277-9536(00)00351-8 CrossRefPubMedGoogle Scholar
  6. 6.
    Mazor KM, Beard RL, Alexander GL, Arora NK, Firneno C, Gaglio B, Greene SM, Lemay CA, Robinson BE, Roblin DW, Walsh K, Street RL Jr, Gallagher TH (2013) Patients’ and family members' views on patient-centered communication during cancer care. Psychooncology 22(11):2487–2495.  https://doi.org/10.1002/pon.3317 CrossRefPubMedGoogle Scholar
  7. 7.
    Charlton CR, Dearing KS, Berry JA, Johnson MJ (2008) Nurse practitioners’ communication styles and their impact on patient outcomes: an integrated literature review. J Am Acad Nurse Pract 20(7):382–388.  https://doi.org/10.1111/j.1745-7599.2008.00336.x CrossRefPubMedGoogle Scholar
  8. 8.
    Thorne SE, Bultz BD, Baile WF (2005) Is there a cost to poor communication in cancer care? A critical review of the literature. Psychooncology 14(10):875–884.  https://doi.org/10.1002/pon.947 CrossRefPubMedGoogle Scholar
  9. 9.
    Basch E, Reeve BB, Mitchell SA Clauser SB et al (2014) Development of the National Cancer Institute’s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). J Natl Cancer Inst 106(9):dju244.  https://doi.org/10.1093/jnci/dju244 CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Portenoy RK, Thaler HT, Kornblith AB, McCarthy Lepore J, Friedlander-Klar H, Kiyasu E, Sobel K, Coyle N, Kemeny N, Norton L, Scher H (1994) The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 30A(9):1326–1236.  https://doi.org/10.1016/0959-8049(94)90182-1 CrossRefPubMedGoogle Scholar
  11. 11.
    Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ (2009) What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 17(8):1117–1128.  https://doi.org/10.1007/s00520-009-0615-5 CrossRefPubMedGoogle Scholar
  12. 12.
    Kruijver IP, Kerkstra A, Bensing JM, van de Wiel HB (2000) Nurse–patient communication in cancer care: a review of the literature. Cancer Nurs 23(1):20–31CrossRefGoogle Scholar
  13. 13.
    Hack TF, Degner LF, Parker PA (2005) The communication goals and needs of cancer patients: a review. Psychooncology 14(10):831–845.  https://doi.org/10.1002/pon.949 CrossRefPubMedGoogle Scholar
  14. 14.
    Detmar SB, Aaronson NK, Wever LDV, Muller M, Schornagel JH (2000) How are you feeling? Who wants to know? Patients’ and oncologists’ preferences for discussing health-related quality-of-life issues. J Clin Oncol 18(18):3295–3301.  https://doi.org/10.1200/JCO.2000.18.18.3295 CrossRefPubMedGoogle Scholar
  15. 15.
    Pollak KI, Arnold RM, Jeffreys AS, Alexander SC, Olsen MK, Abernethy AP, Skinner CS, Rodriguez KL, Tulsky JA (2007) Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol 25(36):5748–5752CrossRefGoogle Scholar
  16. 16.
    Zimmermann C, Del Piccolo L, Finset A (2007) Cues and concerns by patients in medical consultations: a literature review. Psychol Bull 133(3):438CrossRefGoogle Scholar
  17. 17.
    Chidambaram S, Deshields T, Potter P, Olsen S, Chen L (2014) Patient and provider concordance on symptoms during the oncology outpatient clinic visit. J Community Support Oncol 12(10):370–377.  https://doi.org/10.12788/jcso.0080 CrossRefPubMedGoogle Scholar
  18. 18.
    Chang VT, Hwang SS, Feuerman M, Kasimis BS, Thaler HT (2000) The Memorial Symptom Assessment Scale Short Form (MSAS-SF). Cancer 89(5):1162–1171.  https://doi.org/10.1002/1097-0142(20000901)89:5%3C1162::AID-CNCR26%3E3.0.CO;2-Y CrossRefPubMedGoogle Scholar
  19. 19.
    Cleeland CS (2000) Cancer-related symptoms. Semin Radiat Oncol 10(3):175–190.  https://doi.org/10.1053/srao.2000.6590 CrossRefPubMedGoogle Scholar
  20. 20.
    Cleeland CS, Zhao F, O'mara AM CVTSJA, Gilman PB, Weiss M, Mendoza TR, Lee JW, Fisch MJ (2013) The symptom burden of cancer: Evidence for a core set of cancer-related and treatment-related symptoms from the Eastern Cooperative Oncology Group Symptom Outcomes and Practice Patterns study. Cancer 119(24):4333–4340.  https://doi.org/10.1002/cncr.28376 CrossRefPubMedGoogle Scholar
  21. 21.
    Harrington CB, Hansen JA, Moskowitz M, Todd BL, Feuerstein M (2010) It’s not over when it’s over: long-term symptoms in cancer survivors—a systematic review. Int J Psychiatry Med 40(2):163–181.  https://doi.org/10.2190/PM.40.2.c CrossRefPubMedGoogle Scholar
  22. 22.
    Van den Beuken-van Everdingen MHJ, De Rijke JM, Kessels AG, Schouten HC, Van Kleef M, Patijn J (2007) Prevalence of pain in patients with cancer: a systematic review of the past 40 years. Ann Oncol 18(9):1437–1449CrossRefGoogle Scholar
  23. 23.
    Carlsen K, Jensen AB, Jacobsen E, Krasnik M, Johansen C (2005) Psychosocial aspects of lung cancer. Lung Cancer 47:293–300.  https://doi.org/10.1016/j.lungcan.2004.08.002 CrossRefPubMedGoogle Scholar
  24. 24.
    Hofman M, Ryan JL, Figueroa-Moseley CD, Jean-Pierre P, Morrow GR (2007) Cancer-related fatigue: the scale of the problem. Oncologist 12(1):4–10.  https://doi.org/10.1634/theoncologist.12-S1-4 CrossRefPubMedGoogle Scholar
  25. 25.
    Strömgren AS, Groenvold M, Pedersen L, Olsen AK, Sjogren P (2002) Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records. Eur J Cancer 38(6):788–794.  https://doi.org/10.1016/S0959-8049(01)00470-1 CrossRefPubMedGoogle Scholar
  26. 26.
    Kapoor A, Singhal MK, Bagri PK, Narayan S, Beniwal S, Kumar HS (2015) Cancer related fatigue: a ubiquitous problem yet so under reported, under recognized and under treated. South Asian J Cancer 4(1):21.  https://doi.org/10.4103/2278-330X.149942 CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Schwartz AL (2000) Daily fatigue patterns and effect of exercise in women with breast cancer. Cancer Pract 8(1):16–24.  https://doi.org/10.1046/j.1523-5394.2000.81003.x CrossRefPubMedGoogle Scholar
  28. 28.
    Fairchild A (2010) Under-treatment of cancer pain. Curr Opin Support Palliat Care 4(1):11–15.  https://doi.org/10.1097/SPC.0b013e328336289c CrossRefPubMedGoogle Scholar
  29. 29.
    Roberto B, Gambassi G, Lapane K, Landi F, Gatsonis C, Dunlop R, Lipsitz L, Steel K, Mor V, SAGE Study Group (1998) Management of pain in elderly patients with cancer. JAMA 279(23):1877–1882.  https://doi.org/10.1001/jama.279.23.1877 CrossRefGoogle Scholar
  30. 30.
    Passik SD, Kirsh KL, Donaghy K, Holtsclaw E, Theobald D, Cella D, Breitbart W (2002) Patient-related barriers to fatigue communication: initial validation of the fatigue management barriers questionnaire. J Pain Symptom Manag 24(5):481–493.  https://doi.org/10.1016/S0885-3924(02)00518-3 CrossRefGoogle Scholar
  31. 31.
    Okuyama T, Endo C, Seto T, Kato M, Seki N, Akechi T, Furukawa TA, Eguchi K, Hosaka T (2008) Cancer patients' reluctance to disclose their emotional distress to their physicians: a study of Japanese patients with lung cancer. Psychooncology 17(5):460–465.  https://doi.org/10.1002/pon.1255 CrossRefPubMedGoogle Scholar
  32. 32.
    Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Cancer 88:226–237.  https://doi.org/10.1002/(SICI)1097-0142(20000101)88:1%3C226::AID-CNCR30%3E3.0.CO;2-P CrossRefPubMedGoogle Scholar
  33. 33.
    Ryan H, Schofield P, Cockburn J, Butow M, Tattersall J, Turner A, Bandaranayake GD, Bowman D (2005) How to recognize and manage psychological distress in cancer patients. Eur J Cancer Care 14:7–15.  https://doi.org/10.1111/j.1365-2354.2005.00482.x CrossRefGoogle Scholar
  34. 34.
    Krumpal I (2013) Determinants of social desirability bias in sensitive surveys: a literature review. Qual Quant 47(4):2025–2047.  https://doi.org/10.1007/s11135-011-9640-9 CrossRefGoogle Scholar
  35. 35.
    Johnson TP, Fendrich M, Hubbell A. (2002) A validation of the Crowne-Marlowe social desirability scale. In 57th Annual meeting of the American association for public opinion researchGoogle Scholar
  36. 36.
    Stead ML, Brown JM, Fallowfield L, Selby P (2002) Communication about sexual problems and sexual concerns in ovarian cancer: a qualitative study. West J Med 176(1):18.  https://doi.org/10.1136/bmj.323.7317.836 CrossRefPubMedPubMedCentralGoogle Scholar
  37. 37.
    Barsky AJ, Peekna HM, Borus JF (2001) Somatic symptom reporting in women and men. J Gen Intern Med 16(4):266–275.  https://doi.org/10.1046/j.1525-1497.2001.016004266.x CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    de Leeuw JRJ, de Graeff A, Ros WJ, Blijham GH, Hordijk GJ, Winnubst JA (2001) Prediction of depression 6 months to 3 years after treatment of head and neck cancer. Head Neck 23(10):892–898.  https://doi.org/10.1002/hed.1129 CrossRefPubMedGoogle Scholar
  39. 39.
    Heinonen H, Volin L, Uutela A, Zevon M, Barrick C, Ruutu T (2001) Gender associated differences in the quality of life after allogeneic BMT. Bone Marrow Transplant 28(5):503–509.  https://doi.org/10.1038/sj.bmt.1703158 CrossRefPubMedGoogle Scholar
  40. 40.
    Redeker NS, Lev EL, Ruggiero J (2000) Insomnia, fatigue, anxiety, depression, and quality of life of cancer patients undergoing chemotherapy. Sch Inq Nurs Pract 14(4):275–290PubMedGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Siteman Cancer, Barnes-Jewish HospitalWashington University School of MedicineSt. LouisUSA
  2. 2.School of MedicineWashington UniversitySaint LouisUSA
  3. 3.Barnes-Jewish HospitalSaint LouisUSA

Personalised recommendations