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Published in: Journal of Cancer Education 3/2016

Open Access 01-09-2016

Patients’ Preferences for Information About the Benefits and Risks of Second-Line Palliative Chemotherapy and Their Oncologist’s Awareness of These Preferences

Authors: Linda J. M. Oostendorp, Petronella B. Ottevanger, Agnes J. van de Wouw, Aafke H. Honkoop, Maartje Los, Winette T. A. van der Graaf, Peep F. M. Stalmeier

Published in: Journal of Cancer Education | Issue 3/2016

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Abstract

Communication about palliative treatment options requires a balance between providing patients with sufficient information and not providing unwanted information. Surveys have indicated that many patients with advanced cancer express a wish to receive detailed information. In this prospective multicenter study, the information desire of patients with advanced breast or colorectal cancer was further investigated by offering treatment-related information to patients using a decision aid (DA). In addition, this study explored oncologists’ awareness of their patients’ information desire. Seventy-seven patients with advanced breast or colorectal cancer facing the decision whether to start second-line palliative chemotherapy were offered a DA by a nurse. This DA contained information on adverse events, tumor response, and survival. The nurse asked the patient whether each information item was desired. Ninety-five percent of patients chose to receive information on adverse events, 91 % chose to receive information on tumor response, and 74 % chose to receive information on survival. Oncologists’ judgment of patients’ information desire was 100, 97, and 81 %, respectively. For all three information items together, oncologists correctly judged the information desire of 62 % of patients. This study confirms that many patients with advanced cancer wish to receive detailed information on the benefits and risks of palliative treatment options when the information is actually available. Oncologists were adequately aware of this high information desire, but had some difficulty judging the information desire of individual patients. A stepped approach to giving information (“preview, ask, tell, ask”) may help to better meet patients’ information needs.
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Literature
2.
go back to reference Elit L, Charles C, Gafni A, Ranford J, Gold ST, Gold I (2012) Walking a tightrope: oncologists’ perspective on providing information to women with recurrent ovarian cancer (ROC) during the medical encounter. Support Care Cancer 20(10):2327–2333. doi:10.1007/s00520-011-1344-0 CrossRefPubMed Elit L, Charles C, Gafni A, Ranford J, Gold ST, Gold I (2012) Walking a tightrope: oncologists’ perspective on providing information to women with recurrent ovarian cancer (ROC) during the medical encounter. Support Care Cancer 20(10):2327–2333. doi:10.​1007/​s00520-011-1344-0 CrossRefPubMed
4.
go back to reference Barnett MM (2006) Does it hurt to know the worst?—psychological morbidity, information preferences and understanding of prognosis in patients with advanced cancer. Psychooncology 15(1):44–55. doi:10.1002/pon.921 CrossRefPubMed Barnett MM (2006) Does it hurt to know the worst?—psychological morbidity, information preferences and understanding of prognosis in patients with advanced cancer. Psychooncology 15(1):44–55. doi:10.​1002/​pon.​921 CrossRefPubMed
5.
go back to reference Elkin EB, Kim SH, Casper ES, Kissane DW, Schrag D (2007) Desire for information and involvement in treatment decisions: elderly cancer patients’ preferences and their physicians’ perceptions. J Clin Oncol 25(33):5275–5280. doi:10.1200/JCO.2007.11.1922 CrossRefPubMed Elkin EB, Kim SH, Casper ES, Kissane DW, Schrag D (2007) Desire for information and involvement in treatment decisions: elderly cancer patients’ preferences and their physicians’ perceptions. J Clin Oncol 25(33):5275–5280. doi:10.​1200/​JCO.​2007.​11.​1922 CrossRefPubMed
6.
go back to reference Bruera E, Sweeney C, Calder K, Palmer L, Benisch-Tolley S (2001) Patient preferences versus physician perceptions of treatment decisions in cancer care. J Clin Oncol 19(11):2883–2885PubMed Bruera E, Sweeney C, Calder K, Palmer L, Benisch-Tolley S (2001) Patient preferences versus physician perceptions of treatment decisions in cancer care. J Clin Oncol 19(11):2883–2885PubMed
7.
go back to reference Rothenbacher D, Lutz MP, Porzsolt F (1997) Treatment decisions in palliative cancer care: patients’ preferences for involvement and doctors’ knowledge about it. Eur J Cancer 33(8):1184–1189CrossRefPubMed Rothenbacher D, Lutz MP, Porzsolt F (1997) Treatment decisions in palliative cancer care: patients’ preferences for involvement and doctors’ knowledge about it. Eur J Cancer 33(8):1184–1189CrossRefPubMed
8.
go back to reference Stalmeier PF, van Tol-Geerdink JJ, van Lin EN, Schimmel E, Huizenga H, van Daal WA, Leer JW (2007) Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy. J Clin Oncol 25(21):3096–3100. doi:10.1200/JCO.2006.07.4955 CrossRefPubMed Stalmeier PF, van Tol-Geerdink JJ, van Lin EN, Schimmel E, Huizenga H, van Daal WA, Leer JW (2007) Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy. J Clin Oncol 25(21):3096–3100. doi:10.​1200/​JCO.​2006.​07.​4955 CrossRefPubMed
11.
go back to reference Oostendorp LJ, Ottevanger PB, van der Graaf WT, Stalmeier PF (2011) Assessing the information desire of patients with advanced cancer by providing information with a decision aid, which is evaluated in a randomized trial: a study protocol. BMC Med Inf Decis Making 11:9. doi:10.1186/1472-6947-11-9 CrossRef Oostendorp LJ, Ottevanger PB, van der Graaf WT, Stalmeier PF (2011) Assessing the information desire of patients with advanced cancer by providing information with a decision aid, which is evaluated in a randomized trial: a study protocol. BMC Med Inf Decis Making 11:9. doi:10.​1186/​1472-6947-11-9 CrossRef
12.
go back to reference Oostendorp LJ, Stalmeier PF, Pasker-de Jong PC, Van der Graaf WT, Ottevanger PB (2010) Systematic review of benefits and risks of second-line irinotecan monotherapy for advanced colorectal cancer. Anti-Cancer Drugs 21(8):749–758. doi:10.1097/CAD.0b013e32833c57cf CrossRefPubMed Oostendorp LJ, Stalmeier PF, Pasker-de Jong PC, Van der Graaf WT, Ottevanger PB (2010) Systematic review of benefits and risks of second-line irinotecan monotherapy for advanced colorectal cancer. Anti-Cancer Drugs 21(8):749–758. doi:10.​1097/​CAD.​0b013e32833c57cf​ CrossRefPubMed
13.
go back to reference Oostendorp LJ, Stalmeier PF, Donders AR, van der Graaf WT, Ottevanger PB (2011) Efficacy and safety of palliative chemotherapy for patients with advanced breast cancer pretreated with anthracyclines and taxanes: a systematic review. Lancet Oncol 12(11):1053–1061. doi:10.1016/S1470-2045(11)70045-6 CrossRefPubMed Oostendorp LJ, Stalmeier PF, Donders AR, van der Graaf WT, Ottevanger PB (2011) Efficacy and safety of palliative chemotherapy for patients with advanced breast cancer pretreated with anthracyclines and taxanes: a systematic review. Lancet Oncol 12(11):1053–1061. doi:10.​1016/​S1470-2045(11)70045-6 CrossRefPubMed
14.
go back to reference Cicchetti DV, Feinstein AR (1990) High agreement but low kappa: II. Resolving the paradoxes. J Clin Epidemiol 43(6):551–558CrossRefPubMed Cicchetti DV, Feinstein AR (1990) High agreement but low kappa: II. Resolving the paradoxes. J Clin Epidemiol 43(6):551–558CrossRefPubMed
15.
go back to reference Koedoot CG, Oort FJ, de Haan RJ, Bakker PJ, de Graeff A, de Haes JC (2004) The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are: palliative chemotherapy and watchful-waiting. Eur J Cancer 40(2):225–235CrossRefPubMed Koedoot CG, Oort FJ, de Haan RJ, Bakker PJ, de Graeff A, de Haes JC (2004) The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are: palliative chemotherapy and watchful-waiting. Eur J Cancer 40(2):225–235CrossRefPubMed
16.
go back to reference Hagerty RG, Butow PN, Ellis PM, Dimitry S, Tattersall MH (2005) Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol: Off J Eur Soc Med Oncol / ESMO 16(7):1005–1053. doi:10.1093/annonc/mdi211 CrossRef Hagerty RG, Butow PN, Ellis PM, Dimitry S, Tattersall MH (2005) Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol: Off J Eur Soc Med Oncol / ESMO 16(7):1005–1053. doi:10.​1093/​annonc/​mdi211 CrossRef
18.
go back to reference Hancock K, Clayton JM, Parker SM, Wal der S, Butow PN, Carrick S, Currow D et al (2007) Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med 21(6):507–517. doi:10.1177/0269216307080823 CrossRefPubMed Hancock K, Clayton JM, Parker SM, Wal der S, Butow PN, Carrick S, Currow D et al (2007) Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med 21(6):507–517. doi:10.​1177/​0269216307080823​ CrossRefPubMed
19.
go back to reference Cripe LD, Rawl SM, Schmidt KK, Tong Y, Monahan PO, Rand KL (2012) Discussions of life expectancy moderate relationships between prognosis and anxiety or depression in men with advanced cancer. J Palliat Med 15(1):99–105. doi:10.1089/jpm.2011.0249 CrossRefPubMed Cripe LD, Rawl SM, Schmidt KK, Tong Y, Monahan PO, Rand KL (2012) Discussions of life expectancy moderate relationships between prognosis and anxiety or depression in men with advanced cancer. J Palliat Med 15(1):99–105. doi:10.​1089/​jpm.​2011.​0249 CrossRefPubMed
20.
go back to reference Smith TJ, Dow LA, Virago E, Khatcheressian J, Lyckholm LJ, Matsuyama R (2010) Giving honest information to patients with advanced cancer maintains hope. Oncology (Williston Park) 24(6):521–525 Smith TJ, Dow LA, Virago E, Khatcheressian J, Lyckholm LJ, Matsuyama R (2010) Giving honest information to patients with advanced cancer maintains hope. Oncology (Williston Park) 24(6):521–525
22.
go back to reference Fallowfield LJ, Jenkins VA, Beveridge HA (2002) Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 16(4):297–303CrossRefPubMed Fallowfield LJ, Jenkins VA, Beveridge HA (2002) Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 16(4):297–303CrossRefPubMed
23.
go back to reference Clayton JM, Hancock KM, Butow PN, Tattersall MH, Currow DC (2007) Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 186(12 Suppl):S77–108PubMed Clayton JM, Hancock KM, Butow PN, Tattersall MH, Currow DC (2007) Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 186(12 Suppl):S77–108PubMed
24.
go back to reference Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Legare F, Thomson R (2011) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. CD001431. doi: 10.1002/14651858.Cd001431.Pub3 Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Legare F, Thomson R (2011) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. CD001431. doi: 10.​1002/​14651858.​Cd001431.​Pub3
Metadata
Title
Patients’ Preferences for Information About the Benefits and Risks of Second-Line Palliative Chemotherapy and Their Oncologist’s Awareness of These Preferences
Authors
Linda J. M. Oostendorp
Petronella B. Ottevanger
Agnes J. van de Wouw
Aafke H. Honkoop
Maartje Los
Winette T. A. van der Graaf
Peep F. M. Stalmeier
Publication date
01-09-2016
Publisher
Springer US
Published in
Journal of Cancer Education / Issue 3/2016
Print ISSN: 0885-8195
Electronic ISSN: 1543-0154
DOI
https://doi.org/10.1007/s13187-015-0845-9

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