Abstract
Purpose
The literature highlights the confusion amongst women diagnosed with ductal carcinoma in situ (DCIS) about aspects of their disease and treatment and the wide variation in how doctors communicate about DCIS. The DCIS communication aid (CA) was developed to assist clinicians to communicate with women diagnosed with DCIS and to improve women's understanding about their disease, prognosis and treatment options. This study aimed to assess patient and clinician perceptions of the CA.
Methods
The CA included information and diagrams about key aspects of the diagnosis, prognosis, treatment and support. It was designed to be used in clinical consultations and taken home after the consultation. Australian women with DCIS (n=18) participated in structured interviews and clinicians (n=7), including surgeons and radiation oncologists, completed surveys to assess their perceptions of the CA. Main outcome measures included satisfaction with the content, design and diagrams in the CA, and perceptions of the benefits of the CA and its impact on doctor–patient communication.
Results
All clinicians and women with DCIS reported that the CA would assist communication and help women understand their diagnosis.
Conclusions
This is the first intervention designed to decrease the confusion amongst women with DCIS and improve doctor–patient communication in this area. This study highlights that interventions such as the DCIS communication aid may be a valuable resource for clinicians and women with DCIS. This study also highlights key communication challenges relating to DCIS.
References
Arpino G, Laucirica R, Elledge R (2005) Premalignant and in situ breast disease: biology and clinical implications. Ann Intern Med 143:446–457
Erbas B, Provenzano E, Armes J, Gertig D (2006) The natural history of ductal carcinoma in situ of the breast: a review. Breast Cancer Res Treat 97:135–144
Leonard GD, Swain SM (2004) Ductal carcinoma in situ, complexities and challenges. J Natl Cancer Inst 96:906–920
De Morgan S, Redman S, White KJ, Cakir B, Boyages J (2002) "Well, have I got cancer or haven't I?" The psycho-social issues for women diagnosed with ductal carcinoma in situ. Health Expect 5:310–318
Welch HG, Woloshin S, Schwartz (2008) The sea of uncertainty surrounding ductal carcinoma in situ- the price of screening mammography. J Natl Cancer Inst 100:228–229
Virnig BA, Tuttle TM, Shamliyan, Kane RL (2010) Ductal carcinoma in situ of the breast: a systematic review of incidence, treatment, and options. J Natl Cancer Inst 102:170–178
Bijker N, Meihnen P, Johannes LP, Peterse JB, Van Hoorebeeck IV, Julien JP, Gennaro M, Rouanet P, Avril A, Fentiman IS, Bartelink H, Rutgers EJ (2006) Breast-conserving treatment with or without radiotherapy in ductal carcinoma in situ: ten-year results of European Organisation for Research and Treatment of Cancer randomized phase III trial 10853—a study by the EORTC Breast Cancer Cooperative Group and EORTC Radiotherapy Group. J Clin Oncol 24:3381–3387
Tang P, Hajdu SI, Lyman GH (2007) Ductal carcinoma in situ: a review of recent advances. Obstet Gynecol 19:63–67
Silverstein MJ (2003) The University of Southern California/Van Nuys prognostic index for ductal carcinoma in situ of the breast. Am J Surg 186:337–343
De Morgan S, Redman S, D’Este C, Rogers K (2010) Knowledge, satisfaction with information, decisional conflict and psychological morbidity amongst women diagnosed with ductal carcinoma in situ (DCIS). Patient Educ Couns doi:10.1016/j.pec.2010.07.002
Kennedy F, Harcourt D, Rumsey N (2008) The challenge of being diagnosed and treated for ductal carcinoma in situ (DCIS). Eur J Oncol Nurs 12:103–111
Patridge A, Adloff K, Blood E, Dees C, Kaelin C, Golshan M, Ligibel J, De Moor JS, Weeks J, Winer E (2008) Risk perceptions and psychosocial outcomes of women with ductal carcinoma in situ: longitudinal results from a cohort study. J Natl Cancer Inst 100:243–251
van Gestel YRBM, Voogd AC, Vingerhoets AJJM, Mols F, Nieuwenhuijzen GAP, van Driel OJ, van Berlo CLH, van de Poll-Franse LV (2007) A comparison of quality of life, disease impact and risk perception in women with invasive breast cancer and ductal carcinoma in situ. Eur J Cancer 47:549–556
Rakovitch E, Franssen E, Kim J, Ackerman I, Pignol J-P, Paszat L et al (2003) A comparison of risk perception and psychological morbidity in women with ductal carcinoma in situ and early invasive breast cancer. Breast Cancer Res Treat 77:285–293
Whelan T, Levine M, Willan A, Gafni A, Sanders K, Mirsky D, Chambers S, O’Brien M, Reid S, Dubois S (2004) Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery. JAMA 292:435–441
Silvia KA, Sepucha KR (2006) Decision aids in routine practice: lessons from the breast cancer initiative. Health Expect 9:225–264
Lobb EA, Butow PH, Moore A, Barratt A, Tucker K, Gaff C, Kirk J, Dudding T, Butt D (2006) Development of a communication aid to facilitate risk communication in consultations with unaffected women from high risk breast cancer families: A pilot study. J Genet Couns 15:393–405
Fleisher L, Buzaglo J, Collins M, Millard J, Miller SM, Egleston BL, Solarino N, Trinastic J, Cegala DJ, Benson AB, Schulman KA, Weinfurt KP, Sulmasy D, Diefenbach MA, Meropol NJ (2008) Using health communication best practices to develop a web-based provider–patient communication aid: The CONNECTTM study. Patient Educ Counsel 71:378–387
O'Connor AM, Bennett CL, Stacey D, Barry M, Col NF, Eden KB, EntwistleVA, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner D (2009) Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews, Issue 3. Art. No.: CD001431. doi:10.1002/14651858.CD001431.pub2
O’Connor AM, Fiset V, DeGrasse C, Graham ID, Evans W, Stacey D, Laupacis A, Tugwell P (1999) Decision aids for patients considering options affecting cancer outcomes: evidence or efficacy and policy implications. J Natl Cancer Inst Monogr 25:67–80
O’Connor AM, Tugwell P, Wells GA, Elmslie T, Jolly E, Hollingworth G, McPherson R, Bunn H, Graham I, Drake E (1998) A decision aid for women considering hormone therapy after menopause: Decision support framework and evaluation. Patient Educ Counsel 33:267–279
Juraskova I, Butow P, Lopez A, Seccombe M, Coates A, Boyle F, McCarthy N, Reaby L, Forbes JF (2008) Improving informed consent: pilot of a decision aid for women invited to participate in a breast cancer prevention trial (IBIS-II DCIS). Health Expect 11:252–262
Lerman C, Lustbader E, Rimer B, Daly M, Miller S, Sands C et al (1995) Effects of individualized breast cancer risk counseling: A randomized trail. J Natl Cancer Inst 87:286–301
Lipkus IM, Hollands JG (1999) The visual communication of risk. J Natl Cancer Inst Monogr 25:149–163
Patton MQ (2001) Qualitative research and evaluation methods, 2nd edn. Sage Publications, Thousand Oaks
Acknowledgements
The authors wish to express their appreciation to the women with DCIS and clinicians, in particular Associate Professor Geoff Delaney, who were involved in this study. Source of funding: National Breast and Ovarian Cancer Centre (NBOCC), Sydney, Australia.
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De Morgan, S.E., Butow, P.N., Lobb, E.A. et al. Development and pilot testing of a communication aid to assist clinicians to communicate with women diagnosed with ductal carcinoma in situ (DCIS). Support Care Cancer 19, 717–723 (2011). https://doi.org/10.1007/s00520-010-1040-5
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DOI: https://doi.org/10.1007/s00520-010-1040-5