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Do haematological cancer patients get the information they need about their cancer and its treatment? Results of a cross-sectional survey

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Abstract

Purpose

To explore the experiences of haematological cancer outpatients in obtaining information about their cancer and its treatment.

Methods

A cross-sectional survey of adult haematological cancer outpatients was conducted. Participants completed two pen-and-paper questionnaires: the first examined demographics and disease characteristics; the second, completed four weeks later, asked about the cancer information received. Participants indicated whether they received the information they needed about medical procedures and self-management, experiences regarding doctor-patient communication, and self-efficacy in seeking information and support. Where possible, items were derived from Australian psychosocial cancer care guidelines.

Results

Two hundred and ninety-three (84%) patients consented to participate, with 170 (58%) completing both questionnaires. Most participants reported receiving information in accordance with guidelines. Areas identified as requiring improvement included difficulty recalling information (28%); information overload (26%); insufficient opportunity to ask questions (23%); and insufficient information about managing anxiety related to medical procedures (20%).

Conclusion

While many haematological cancer patients report receiving adequate information, there is room for improvement. Implementation of evidence-based strategies, such as decision aids or audiotapes of the consultation, may help to improve information experiences.

Practice implications

A patient-centred approach to information provision is essential for ensuring information addresses the needs and preferences of the patient.

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References

  1. Smith A, Howell D, Patmore R, Jack A, Roman E (2011) Incidence of haematological malignancy by sub-type: a report from the Haematological Malignancy Research Network. Br J Cancer 105(11):1684–1692

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  2. Australian Institute of Health and Welfare & Australasian Association of Cancer Registries (2017) Cancer in Australia: in brief 2017. Cancer series no. 102. Cat. no. CAN 101. AIHW, Canberra

  3. Montgomery C, Pocock M, Titley K, Lloyd K (2002) Individual quality of life in patients with leukaemia and lymphoma. Psycho-Oncology 11(3):239–243

    Article  PubMed  Google Scholar 

  4. National Cancer Institute (2010) Fact Sheet 7.41: bone marrow transplantation and peripheral blood stem cell transplantation. http://www.cancer.gov/about-cancer/treatment/types/stem-cell-transplant/stem-cell-fact-sheet#q14. Accessed 6 June 2016

  5. Clinton-McHarg T, Carey M, Sanson-Fisher R, Tzelepis F, Bryant J, Williamson A (2014) Anxiety and depression among haematological cancer patients attending treatment centres: prevalence and predictors. J Affect Disord 165:176–181. https://doi.org/10.1016/j.jad.2014.04.072

    Article  PubMed  Google Scholar 

  6. Breen SJ, Baravelli CM, Schofield PE, Jefford M, Yates PM, Aranda SK (2009) Is symptom burden a predictor of anxiety and depression in patients with cancer about to commence chemotherapy? Med J Aust 190(7):S99

    Article  PubMed  Google Scholar 

  7. Allart P, Soubeyran P, Cousson-Gélie F (2013) Are psychosocial factors associated with quality of life in patients with haematological cancer? A critical review of the literature. Psycho-Oncology 22(2):241–249. https://doi.org/10.1002/pon.3026

    Article  PubMed  Google Scholar 

  8. Swash B, Hulbert-Williams N, Bramwell R (2014) Unmet psychosocial needs in haematological cancer: a systematic review. Support Care Cancer 22(4):1131–1141

    Article  PubMed  CAS  Google Scholar 

  9. Institute of Medicine, Committee on Quality of Health Care in America (2001) Crossing the quality chasm: a new health system for the 21st century Committee on Quality of Health Care in America, Washington, DC

  10. Tutty L, O’Connor G (1999) Patient information leaflets: some pertinent guidelines. Radiography 5(1):11–14. https://doi.org/10.1016/S1078-8174(99)90003-2

    Article  Google Scholar 

  11. Charles C, Gafni A, Whelan T (1997) Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 44(5):681–692. https://doi.org/10.1016/S0277-9536(96)00221-3

    Article  PubMed  CAS  Google Scholar 

  12. Coulter A, Entwistle V, Gilbert D (1999) Sharing decisions with patients: is the information good enough? BMJ 318(7179):318–322. https://doi.org/10.1136/bmj.318.7179.318

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  13. Alexanian R, Dimopoulos M (1994) The treatment of multiple myeloma. N Engl J Med 330(7):484–489. https://doi.org/10.1056/NEJM199402173300709

    Article  PubMed  CAS  Google Scholar 

  14. Pui CH, Evans WE (2006) Treatment of acute lymphoblastic leukemia. N Engl J Med 354(2):166–178. https://doi.org/10.1056/NEJMra052603

    Article  PubMed  CAS  Google Scholar 

  15. Gattellari M, Butow PN, Tattersall MH (2001) Sharing decisions in cancer care. Soc Sci Med 52(12):1865–1878

    Article  PubMed  CAS  Google Scholar 

  16. Shay LA, Lafata JE (2015) Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Mak 35(1):114–131

    Article  Google Scholar 

  17. Coulter A, Ellins J (2007) Effectiveness of strategies for informing, educating, and involving patients. BMJ 335(7609):24–27. https://doi.org/10.1136/bmj.39246.581169.80

    Article  PubMed  PubMed Central  Google Scholar 

  18. Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K (2000) Cancer patients’ information needs and information seeking behaviour: in depth interview study. BMJ 320(7239):909–913

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  19. Hack TF, Degner LF, Watson P, Sinha L (2006) Do patients benefit from participating in medical decision making? Longitudinal follow-up of women with breast cancer. Psycho-Oncology 15(1):9–19. https://doi.org/10.1002/pon.907

    Article  PubMed  Google Scholar 

  20. Joseph-Williams N, Elwyn G, Edwards A (2014) Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns 94(3):291–309. https://doi.org/10.1016/j.pec.2013.10.031

    Article  PubMed  Google Scholar 

  21. Schofield P, Jefford M, Carey M, Thomson K, Evans M, Baravelli C, Aranda S (2008) Preparing patients for threatening medical treatments: effects of a chemotherapy educational DVD on anxiety, unmet needs, and self-efficacy. Support Care Cancer 16(1):37–45

    Article  PubMed  Google Scholar 

  22. Powell R, Bruce J, Johnston M, Vögele C, Scott N, Shehmar M, Roberts T (2010) Psychological preparation and postoperative outcomes for adults undergoing surgery under general anaesthesia. The Cochrane Library

    Book  Google Scholar 

  23. Schofield MJ, Walkom S, Sanson-Fisher R (1997) Patient-provider agreement on guidelines for preparation for breast cancer treatment. Behav Med 23(1):36–45

    Article  PubMed  CAS  Google Scholar 

  24. Schofield P, Gough K, Ugalde A, Carey M, Aranda S, Sanson-Fisher R (2012) Cancer Treatment Survey (CaTS): development and validation of a new instrument to measure patients’ preparation for chemotherapy and radiotherapy. Psycho-Oncology 21(3):307–315. https://doi.org/10.1002/pon.1896

    Article  PubMed  Google Scholar 

  25. Burish TG, Snyder SL, Jenkins RA (1991) Preparing patients for cancer chemotherapy: effect of coping preparation and relaxation interventions. J Consult Clin Psychol 59(4):518–525

    Article  PubMed  CAS  Google Scholar 

  26. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P, Supportive Care Review G (2000) The unmet supportive care needs of patients with cancer. Cancer 88(1):226–237. https://doi.org/10.1002/(SICI)1097-0142(20000101)88:1<226::AID-CNCR30>3.0.CO;2-P

    Article  PubMed  CAS  Google Scholar 

  27. Rood JA, Eeltink CM, van Zuuren FJ, Verdonck-de Leeuw IM, Huijgens PC (2015) Perceived need for information of patients with haematological malignancies: a literature review. J Clin Nurs 24(3–4):353–369. https://doi.org/10.1111/jocn.12630

    Article  PubMed  Google Scholar 

  28. Kim AR, Park HA (2015) Web-based self-management support interventions for cancer survivors: a systematic review and meta-analyses. Stud Health Technol Inform 216:142–147

    PubMed  Google Scholar 

  29. Schulman-Green D, Bradley EH, Nicholson NR, George E, Indeck A, McCorkle R (2012) One step at a time: self-management and transitions among women with ovarian cancer. Oncol Nurs Forum 39(4):354–360. https://doi.org/10.1188/12.ONF.354-360

    Article  PubMed  PubMed Central  Google Scholar 

  30. Cox A, Jenkins V, Catt S, Langridge C, Fallowfield L (2006) Information needs and experiences: an audit of UK cancer patients. Eur J Oncol Nurs 10(4):263–272. https://doi.org/10.1016/j.ejon.2005.10.007

    Article  PubMed  Google Scholar 

  31. Jansen J, Butow PN, van Weert JC, van Dulmen S, Devine RJ, Heeren TJ, Bensing JM, Tattersall MH (2008) Does age really matter? Recall of information presented to newly referred patients with cancer. J Clin Oncol 26(33):5450–5457. https://doi.org/10.1200/jco.2007.15.2322

    Article  PubMed  Google Scholar 

  32. Stark DPH, House A (2000) Anxiety in cancer patients. Br J Cancer 83(10):1261–1267. https://doi.org/10.1054/bjoc.2000.1405

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  33. Watson PW, McKinstry B (2009) A systematic review of interventions to improve recall of medical advice in healthcare consultations. J R Soc Med 102(6):235–243. https://doi.org/10.1258/jrsm.2009.090013

    Article  PubMed  PubMed Central  Google Scholar 

  34. National Breast Cancer and National Cancer Control Initiative (2003) Clinical practice guidelines for psychosocial care of adults with cancer. National Breast Cancer Centre, Camperdown

    Google Scholar 

  35. McPherson CJ, Higginson IJ, Hearn J (2001) Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials. J Public Health 23(3):227–234. https://doi.org/10.1093/pubmed/23.3.227

    Article  CAS  Google Scholar 

  36. Bryant J, Sanson-Fisher R, Stevenson W, Smits R, Henskens F, Wei A, Tzelepis F, D’Este C, Paul C, Carey M (2015) Protocol of a multi-centre randomised controlled trial of a web-based information intervention with nurse-delivered telephone support for haematological cancer patients and their support persons. BMC Cancer 15(1):1–13. https://doi.org/10.1186/s12885-015-1314-x

    Article  CAS  Google Scholar 

  37. SAS Institute (2002-2011) SAS software, version 9.4 of the SAS system for Windows. Copyright SAS Institute Inc, Cary

  38. Laidsaar-Powell RC, Butow PN, Bu S, Charles C, Gafni A, Lam WWT, Jansen J, McCaffery KJ, Shepherd HL, Tattersall MHN, Juraskova I (2013) Physician–patient–companion communication and decision-making: a systematic review of triadic medical consultations. Patient Educ Couns 91(1):3–13. https://doi.org/10.1016/j.pec.2012.11.007

    Article  PubMed  CAS  Google Scholar 

  39. Kessels RP (2003) Patients’ memory for medical information. J R Soc Med 96(5):219–222

    PubMed  PubMed Central  Google Scholar 

  40. van Osch M, Sep M, van Vliet LM, van Dulmen S, Bensing JM (2014) Reducing patients’ anxiety and uncertainty, and improving recall in bad news consultations. Health Psychol 33(11):1382–1390

    Article  PubMed  Google Scholar 

  41. Zucca A, Sanson-Fisher R, Waller A, Carey M, Boadle D (2017) The first step in ensuring patient-centred quality of care: ask the patient. Eur J Cancer Care 26(1). https://doi.org/10.1111/ecc.12435

  42. Holmes-Rovner M, Nelson WL, Pignone M, Elwyn G, Rovner DR, O’Connor AM, Coulter A, Correa-de-Araujo R (2007) Are patient decision aids the best way to improve clinical decision making? Report of the IPDAS Symposium. Med Decis Mak 27(5):599–608

    Article  Google Scholar 

  43. Kinnersley P, Edwards AG, Hood K, Cadbury N, Ryan R, Prout H, Owen D, MacBeth F, Butow P, Butler C (2007) Interventions before consultations for helping patients address their information needs. The Cochrane Library

    Book  Google Scholar 

  44. Jefford M, Tattersall MH (2002) Informing and involving cancer patients in their own care. Lancet Oncol 3(10):629–637

    Article  PubMed  Google Scholar 

  45. Waller A, Forshaw K, Bryant J, Mair S (2014) Interventions for preparing patients for chemotherapy and radiotherapy: a systematic review. Support Care Cancer 22(8):2297–2308

    Article  PubMed  Google Scholar 

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Funding

This research was funded by the Cancer Council New South Wales (CSR 11-02) and infrastructure funding from the Hunter Medical Research Institute. The development of the survey instrument was also supported by the Cancer Institute New South Wales (10/THS/2-14). Dr. Jamie Bryant was supported by an Australian Research Council Post-Doctoral Industry Fellowship. Mrs. Lisa Hyde is supported by an Australian Government Research Training Program Scholarship. Ms. Anne Herrmann is supported by a University of Newcastle International Postgraduate Research Scholarship, a University of Newcastle/Hunter Cancer Research Alliance Research Scholarship and has received funding support from the Hunter Cancer Research Alliance Implementation Science Flagship Program as part of the 2017 Research Higher Degree Student Award initiative.

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Authors and Affiliations

  1. Health Behaviour Research Collaborative, School of Medicine and Public Health, Faculty of Health and Medicine, University of Newcastle, W4, HMRI Building, Callaghan, NSW, 2308, Australia

    Rochelle Watson, Jamie Bryant, Robert Sanson-Fisher, Heidi Turon, Lisa Hyde & Anne Herrmann

  2. Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, Australia

    Rochelle Watson, Jamie Bryant, Robert Sanson-Fisher, Heidi Turon, Lisa Hyde & Anne Herrmann

  3. Hunter Medical Research Institute, New Lambton Heights, Australia

    Rochelle Watson, Jamie Bryant, Robert Sanson-Fisher, Heidi Turon, Lisa Hyde & Anne Herrmann

Authors
  1. Rochelle Watson
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  2. Jamie Bryant
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  3. Robert Sanson-Fisher
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  4. Heidi Turon
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  5. Lisa Hyde
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  6. Anne Herrmann
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Contributions

All authors contributed to preparation and review of the manuscript. In addition, HT was the project manager responsible for overseeing data collection. RW, JB, and RSF were responsible for development of the measure.

Corresponding author

Correspondence to Jamie Bryant.

Ethics declarations

Appropriate ethics approval was obtained from the University of Newcastle Human Research Ethics Committee and the relevant governing bodies at the participating hospitals.

Competing interests

All authors declare that they have no competing interests.

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Watson, R., Bryant, J., Sanson-Fisher, R. et al. Do haematological cancer patients get the information they need about their cancer and its treatment? Results of a cross-sectional survey. Support Care Cancer 27, 1509–1517 (2019). https://doi.org/10.1007/s00520-018-4525-2

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  • DOI: https://doi.org/10.1007/s00520-018-4525-2

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