Top

Supportive Care in Cancer

Published in:

01-04-2019 | Original Article

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

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

Published in: Supportive Care in Cancer | Issue 4/2019

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.

Available only for authorised users

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):1684–1692PubMedPubMedCentralCrossRef

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

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

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

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 PubMedCrossRef

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):S99PubMedCrossRef

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 PubMedCrossRef

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

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 CrossRef

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 PubMedCrossRef

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 PubMedPubMedCentralCrossRef

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 PubMedCrossRef

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 PubMedCrossRef

15.

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

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):114–131CrossRef

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 PubMedPubMedCentralCrossRef

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):909–913PubMedPubMedCentralCrossRef

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 PubMedCrossRef

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 PubMedCrossRef

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):37–45PubMedCrossRef

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 LibraryCrossRef

23.

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

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 PubMedCrossRef

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):518–525PubMedCrossRef

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 PubMedCrossRef

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 PubMedCrossRef

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 216:142–147PubMed

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 PubMedPubMedCentralCrossRef

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 PubMedCrossRef

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 PubMedCrossRef

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 PubMedPubMedCentralCrossRef

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 PubMedPubMedCentralCrossRef

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

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 CrossRef

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 CrossRef

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 PubMedCrossRef

39.

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

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):1382–1390PubMedCrossRef

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):599–608CrossRef

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 LibraryCrossRef

44.

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

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):2297–2308PubMedCrossRef

Title: Do haematological cancer patients get the information they need about their cancer and its treatment? Results of a cross-sectional survey
Authors: Rochelle Watson
Jamie Bryant
Robert Sanson-Fisher
Heidi Turon
Lisa Hyde
Anne Herrmann
Publication date: 01-04-2019
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 4/2019
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-018-4525-2

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

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

Practice implications

Please log in to get access to this content

Other articles of this Issue 4/2019

The impact of parental cancer on preadolescent children (0–11 years) in Western Australia: a longitudinal population study

Predictive factors for cancer-associated thrombosis in a large retrospective single-center study

Which factors can aid clinicians to identify a risk of pain during the following month in patients with bone metastases? A longitudinal analyses

Feasibility of using a pragmatic trials model to compare two primary febrile neutropenia prophylaxis regimens (ciprofloxacin versus G-CSF) in patients receiving docetaxel-cyclophosphamide chemotherapy for breast cancer (REaCT-TC)

Undiagnosed cardiac deficits in non-small cell carcinoma patients in the candidate population for anti-cachexia clinical trials

Women’s experiences of encounters with healthcare professionals’ regarding work after breast-cancer surgery and associations with sickness absence: a 2-year follow-up cohort study

Keynote webinar | Spotlight on antibody–drug conjugates in cancer