Advertisement

Supportive Care in Cancer

, Volume 19, Issue 5, pp 717–723 | Cite as

Development and pilot testing of a communication aid to assist clinicians to communicate with women diagnosed with ductal carcinoma in situ (DCIS)

  • Simone E. De MorganEmail author
  • Phyllis N. Butow
  • Elizabeth A. Lobb
  • Melanie A. Price
  • Caroline Nehill
Short Communication

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.

Keywords

Ductal carcinoma in situ (DCIS) Communication aid Doctor–patient communication Knowledge Patient-centred care Treatment decision making 

Notes

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.

Conflicts of interest

None.

References

  1. 1.
    Arpino G, Laucirica R, Elledge R (2005) Premalignant and in situ breast disease: biology and clinical implications. Ann Intern Med 143:446–457PubMedGoogle Scholar
  2. 2.
    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 97:135–144PubMedCrossRefGoogle Scholar
  3. 3.
    Leonard GD, Swain SM (2004) Ductal carcinoma in situ, complexities and challenges. J Natl Cancer Inst 96:906–920PubMedCrossRefGoogle Scholar
  4. 4.
    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 5:310–318PubMedCrossRefGoogle Scholar
  5. 5.
    Welch HG, Woloshin S, Schwartz (2008) The sea of uncertainty surrounding ductal carcinoma in situ- the price of screening mammography. J Natl Cancer Inst 100:228–229PubMedCrossRefGoogle Scholar
  6. 6.
    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 102:170–178PubMedCrossRefGoogle Scholar
  7. 7.
    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 24:3381–3387PubMedCrossRefGoogle Scholar
  8. 8.
    Tang P, Hajdu SI, Lyman GH (2007) Ductal carcinoma in situ: a review of recent advances. Obstet Gynecol 19:63–67Google Scholar
  9. 9.
    Silverstein MJ (2003) The University of Southern California/Van Nuys prognostic index for ductal carcinoma in situ of the breast. Am J Surg 186:337–343PubMedCrossRefGoogle Scholar
  10. 10.
    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
  11. 11.
    Kennedy F, Harcourt D, Rumsey N (2008) The challenge of being diagnosed and treated for ductal carcinoma in situ (DCIS). Eur J Oncol Nurs 12:103–111PubMedCrossRefGoogle Scholar
  12. 12.
    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 100:243–251CrossRefGoogle Scholar
  13. 13.
    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 47:549–556Google Scholar
  14. 14.
    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 77:285–293PubMedCrossRefGoogle Scholar
  15. 15.
    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 292:435–441PubMedCrossRefGoogle Scholar
  16. 16.
    Silvia KA, Sepucha KR (2006) Decision aids in routine practice: lessons from the breast cancer initiative. Health Expect 9:225–264CrossRefGoogle Scholar
  17. 17.
    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 15:393–405PubMedCrossRefGoogle Scholar
  18. 18.
    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 71:378–387CrossRefGoogle Scholar
  19. 19.
    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
  20. 20.
    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 25:67–80PubMedGoogle Scholar
  21. 21.
    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 33:267–279CrossRefGoogle Scholar
  22. 22.
    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 11:252–262PubMedCrossRefGoogle Scholar
  23. 23.
    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 87:286–301PubMedCrossRefGoogle Scholar
  24. 24.
    Lipkus IM, Hollands JG (1999) The visual communication of risk. J Natl Cancer Inst Monogr 25:149–163PubMedGoogle Scholar
  25. 25.
    Patton MQ (2001) Qualitative research and evaluation methods, 2nd edn. Sage Publications, Thousand OaksGoogle Scholar

Copyright information

© Springer-Verlag 2010

Authors and Affiliations

  • Simone E. De Morgan
    • 1
    • 2
    Email author
  • Phyllis N. Butow
    • 2
  • Elizabeth A. Lobb
    • 2
  • Melanie A. Price
    • 2
  • Caroline Nehill
    • 3
  1. 1.School of Medicine and Public HealthUniversity of NewcastleNewcastleAustralia
  2. 2.Centre for Medical Psychology and Evidence-Based Decision Making (CeMPED), School of PsychologyUniversity of SydneySydneyAustralia
  3. 3.National Breast and Ovarian Cancer Centre (NBOCC)SydneyAustralia

Personalised recommendations