Development of a Decision Aid about fertility preservation for women with breast cancer in the Netherlands

Journal of Psychosomatic Obstetrics and Gynecology

Volumn 34, Issue 4, 2013, Pages 170-178

  Garvelink, Mirjam M ^a   Ter Kuile, Moniek M ^a   Fischer, Maarten J ^a   Louwé, Leoni A ^a   Hilders, Carina G J M ^b   Kroep, Judith R ^a   Stiggelbout, Anne M ^a  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^b REINIER DE GRAAF HOSPITAL   (Netherlands)

Author keywords

Breast cancer; Decision Aid; Fertility preservation; Systematic development

Indexed keywords

ADAPTATION; ADULT; ARTICLE; BREAST CANCER; CLINICAL ARTICLE; DECISION AID; DECISION SUPPORT SYSTEM; FEMALE; HUMAN; KNOWLEDGE; NETHERLANDS; PATIENT COUNSELING; PATIENT DECISION MAKING; PHYSICIAN; REPRODUCTIVE PROCEDURE;

ADULT; BREAST NEOPLASMS; DECISION MAKING; DECISION SUPPORT TECHNIQUES; FEMALE; FERTILITY PRESERVATION; HUMANS; NETHERLANDS; QUESTIONNAIRES; WOMEN;

EID: 84887489690     PISSN: 0167482X     EISSN: 17438942     Source Type: Journal    
DOI: 10.3109/0167482X.2013.851663     Document Type: Article

References (38)

1. Canada AL, Schover LR. The psychosocial impact of interrupted childbearing in long-term female cancer survivors. Psycho-Oncology 2012;21:134-43.
2. Tschudin S, Bitzer J. Psychological aspects of fertility preservation in men and women affected by cancer and other life-threatening diseases. Hum Reprod Update 2009;15:587-97.
3. Gorman JR, Malcarne VL, Roesch SC, et al. Depressive symptoms among young breast cancer survivors: the importance of reproductive concerns. Breast Cancer Res Treat 2010;123:477-85.
4. Duffy CM, Allen SM, Clark MA. Discussions regarding reproductive health for young women with breast cancer undergoing chemotherapy. J Clin Oncol 2005;23:766-73. (Pubitemid 46224175)
5. Thewes B, Meiser B, Taylor A, et al. Fertility-and menopauserelated information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol 2005;23:5155-65. (Pubitemid 46224024)
6. Peate M, Meiser B, Hickey M, Friedlander M. The fertility-related concerns, needs and preferences of younger women with breast cancer: a systematic review. Breast Cancer Res Treat 2009;116: 215-23.
7. Jenninga E, Hilders CG, Louwe LA, Peters AA. Female fertility preservation: practical and ethical considerations of an underused procedure. Cancer J 2008;14:333-9.
8. Quinn GP, Vadaparampil ST, King L, et al. Impact of physicians' personal discomfort and patient prognosis on discussion of fertility preservation with young cancer patients. Patient Educ Counsel 2009;77:338-43.
9. Quinn GP, Vadaparampil ST, Gwede CK, et al. Discussion of fertility preservation with newly diagnosed patients: oncologists' views. J Cancer Survivor: Res Pract 2007;1:146-55.
10. King L, Quinn GP, Vadaparampil ST, et al. Oncology nurses' perceptions of barriers to discussion of fertility preservation with patients with cancer. Clin J Oncol Nurs 2008;12:467-76.
11. Quinn GP, Vadaparampil ST, Bell-Ellison BA, et al. Patientphysician communication barriers regarding fertility preservation among newly diagnosed cancer patients. Soc Sci Med 2008;66: 784-9. (Pubitemid 350266941)
12. Garvelink MM, ter Kuile MM, Louwe LA, et al. A Delphi consensus study among patients and clinicians in the Netherlands on the procedure of informing young breast cancer patients about Fertility Preservation. Acta Oncol 2012;51:1062-9.
13. Garvelink MM, ter Kuile MM, Bakker RM, et al. Women's experiences with information provision and deciding about fertility preservation in the Netherlands: 'satisfaction in general, but unmet needs'. Health Expect 2013. DOI: 10.1111/hex.12068. [Epub ahead of print].
14. Peate M, Meiser B, Friedlander M, et al. It's now or never: fertilityrelated knowledge, decision-making preferences, and treatment intentions in young women with breast cancer-an Australian fertility decision aid collaborative group study. J Clin Oncol 2011; 29:1670-7.
15. Hill KA, Nadler T, Mandel R, et al. Experience of young women diagnosed with breast cancer who undergo fertility preservation consultation. Clin Breast Cancer 2012;12:127-32.
16. Kelvin JF, Kroon L, Ogle SK. Fertility preservation for patients with cancer. Clin J Oncol Nurs 2012;16:205-10.
17. O'Connor AM, Bennett CL, Stacey D, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2009;(3):CD001431.
18. O'Connor AM, Legare F, Stacey D. Risk communication in practice: the contribution of decision aids. BMJ 2003;327:736-40. (Pubitemid 37176762)
19. Peate M, Meiser B, Cheah BC, et al. Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertilityrelated decision aid in young women with early-stage breast cancer. Br J Cancer 2012;106:1053-61.
20. Elwyn G, O'Connor A, Stacey D, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ 2006;333:417-422.
21. O'Connor A, Jacobsen MJ. Workbook on developing and evaluating patient decision aids. Canada: University of Ottawa; 2003.
22. Quality Institute for Health Care (CBO). [Manual for decision aid development] Dutch: Handleiding keuzehulp ontwikkeling. Utrecht: CBO; 2008.
23. Dutch association for Obstetrics and Gynecology (NVOG), Quality Institute for Health Care (CBO). [Guideline cryopreservation of ovarian tissue] Dutch: richtlijn cryopreservatie van ovariumweefsel. Utrecht: NVOG/CBO; 2007.
24. Nelson WL, Han PK, Fagerlin A, et al. Rethinking the objectives of decision aids: a call for conceptual clarity. Med Decis Making 2007;27:609-18. (Pubitemid 47547596)
25. O'Connor AM, Wells GA, Tugwell P, et al. The effects of an 'explicit' values clarification exercise in a woman's decision aid regarding postmenopausal hormone therapy. Health Expect 1999;2: 21-32. (Pubitemid 29287468)
26. Feldman-Stewart D, Tong C, Siemens R, et al. The impact of explicit values clarification exercises in a patient decision aid emerges after the decision is actually made: evidence from a randomized controlled trial. Med Decis Making 2012;32:616-26.
27. Abhyankar P, Bekker HL, Summers BA, Velikova G. Why values elicitation techniques enable people to make informed decisions about cancer trial participation. Health Expect 2011;14:20-32.
28. Sheridan SL, Griffith JM, Behrend L, et al. Effect of adding a values clarification exercise to a decision aid on heart disease prevention: a randomized trial. Med Decis Making 2010;30: E28-39.
29. Feldman-Stewart D, Brennenstuhl S, Brundage MD, Roques T. An explicit values clarification task: development and validation. Patient Educ Counsel 2006;63:350-6. (Pubitemid 44511873)
30. Holmes-Rovner M. International Patient Decision Aid Standards (IPDAS): beyond decision aids to usual design of patient education materials. Health Expect 2007;10:103-7. (Pubitemid 46808896)
31. Llewellyn-Thomas H. Values clarification. In: Elwyn G, Edwards A, eds. Shared decision making in health care: achieving evidence based patient choice. 2nd ed. Oxford: Oxford University Press; 2009:123-33.
32. Ubel PA, Jepson C, Baron J. The inclusion of patient testimonials in decision aids: effects on treatment choices. Med Decis Making 2001;21:60-8. (Pubitemid 32245032)
33. Winterbottom A, Bekker HL, Conner M, Mooney A. Does narrative information bias individual's decision making A systematic review. Soc Sci Med 2008;67:2079-88.
34. Harwood R, Douglas C, Clark D. Decision aids for breast and nodal surgery in patients with early breast cancer: development and a pilot study. Asia Pac J Clin Oncol 2011;7:114-22.
35. Wong J, D'Alimonte L, Angus J, et al. Development of patients' decision aid for older women with stage I breast cancer considering radiotherapy after lumpectomy. Int J Radiat Oncol Biol Phys 2012; 84:30-8.
36. Lerman C, Narod S, Schulman K, et al. BRCA1 testing in families with hereditary breast-ovarian cancer: a prospective study of patient decision making and outcomes. JAMA 1996;275:1885-92. (Pubitemid 26196448)
37. Stirling C, Leggett S, Lloyd B, et al. Decision aids for respite service choices by carers of people with dementia: development and pilot RCT. BMC Med Inform Decis Mak 2012;12:21.
38. Peate M, Watts K, Wakefield CE. The 'value' of values clarification in cancer-related decision aids. Patient Educ Couns 2013;90:281-3.