Involving patients in their care

Current Breast Cancer Reports

Volumn 6, Issue 3, 2014, Pages 211-218

  Entwistle, Vikki A ^a   Brown, Rebecca C H ^a   Morgan, Heather M ^a   Skea, Zoë C ^a  

^a UNIVERSITY OF ABERDEEN   (United Kingdom)

Author keywords

Breast cancer; Patient activation; Patient participation; Professional patient relations; Self management; Shared decision making; Treatment decision making

Indexed keywords

BREAST CANCER; CANCER PATIENT; HEALTH CARE DELIVERY; HEALTH CARE POLICY; HEALTH PRACTITIONER; HUMAN; INFORMED CONSENT; PATIENT CARE; PATIENT DECISION MAKING; REVIEW; SOCIAL ASPECT;

EID: 84906934613     PISSN: 19434588     EISSN: 19434596     Source Type: Journal    
DOI: 10.1007/s12609-014-0151-2     Document Type: Review

References (74)

1. Entwistle VA, Watt IS. Patient involvement in treatment decision making: the case for a broader conceptual framework. Patient Educ Couns. 2006;63:268-78.
2. Lee EO, Emmanuel EJ. Shared decision making to improve care and reduce costs. N Engl J Med. 2013;368:6-8.
3. Härter M, van der Weijden T, Elwyn G. Policy and practice developments in the implementation of shared decision-making: an international perspective. Z Evid Fortbild Qual Gesundh Wesen. 2011;105:229-33.
4. Alambuya RN, Ali S, Apostolidis K, et al. Salzburg statement on shared decision-making. BMJ. 2011;342:d1745.
5. Stiggelbout AM, van der Weijden T, de Wit MPT. Shared decision-making: really putting patients at the centre of healthcare. BMJ. 2012;354:e256.
6. King E, Taylor J, Williams R, et al. The MAGIC programme evaluation. London: The Health Foundation; 2013.
7. • Elwyn G, Frosch D, Thomson R, et al. Shared decision-making: a model for clinical practice. J Gen Int Med. 2012;27:1361-7. A summary for clinicians that outlines 3 key steps in shared decision making.
8. O'Connor AM, Légaré F, Stacey D. Risk communication in practice: the contribution of decision aids. BMJ. 2003;327:736.
9. Lux MP, Bayer CM, Loehberg CR, et al. Shared decision-making in meta-static breast cancer: discrepancy between the expected prolongation of life and treatment efficacy between patients and physicians, and influencing factors. Breast Cancer Res Treat. 2013;139:429-40.
10. Thiel FC, Schrauder MG, Fasching PA, et al. Shared decisionmaking in breast cancer: discrepancy between the treatment efficacy required by patients and by physicians. Breast Cancer Res Treat. 2012;135:811-20.
11. Fowler Jr FJ, Gallagher PM, Drake KM, et al. Decision dissonance: evaluating an approach to measuring the quality of surgical decision-making. Jt Comm J Qual Patient Saf. 2013;39:136-44.
12. Sepucha KR, Borkhoff CM, Lally J, et al. Establishing the effectiveness of decision aids: key constructs and measurement instruments. BMC Med Inform Dec Making. 2013;13(Suppl2):S12.
13. Katz SJ, Morrow M. The challenge of individualizing treatments for patients with breast cancer. JAMA. 2012;307:1379-80.
14. • Brown R, Butow P, Wilson-Genderson M, et al. Meeting the decision-making preferences of patients with breast cancer in oncology consultations: impact on decision-related outcomes. J Clin Oncol. 2012;30:857-62. An international study showing that people's preferences for involvement can shift during consultations and that people who are at least as involved as they prefer have better decision-related outcomes.
15. Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1:CD001431. doi:10.1002/14651858.CD001431.pub4.
16. Au A, Lam W, Chan M, et al. Development and pilot testing of a decision aid for use among Chinese women facing breast cancer surgery. Health Expect. 2011;14:405-16.
17. Peate M, Meiser B, Cheah B, et al. Making hard choices easier: a prospective multicentre study to assess the efficacy of a fertility-related decision aid in young women with early stage breast cancer. Br J Cancer. 2012;106:1053-61.
18. Patient decision aids (Ottawa Health Research Institute), Available at: https://decisionaid.ohri.ca/.
19. Fagerlin A, Pignone M, Abhyankar P, et al. Clarifying values: an updated review. BMC Med Inform Dec Making. 2013;13 Suppl 2:S8.
20. Bekker HL, Winterbottom AE, Butow P, et al. Do personal stories make patient decision aids more effective: a critical review of evidence and theory? BMC Med Inform Dec Making. 2013;13(Suppl2):S9.
21. Shaffer VA, Tomek S, Hulsey L. The effect of narrative information in a publicly available patient decision aid for early-stage breast cancer. Health Commun. 2014;29:64-73.
22. Elwyn G, Caldron L, Rosenkranz K, et al. Breast cancer surgery option grid, 2013. Available at: http://www.optiongrid.org/resources/ breastcancersurgery-grid-USA.pdf.
23. Jibaja-Weiss M, Volk R, Granchi T, Neff N, Robinson E, Spann S, et al. Entertainment education for breast cancer surgery decisions: a randomized trial among patients with low health literacy. Patient Educ Couns. 2011;84:41-8.
24. McCaffery KJ, Holmes-Rovner M, Smith SK. Addressing health literacy in patient decision aids. BMC Med Inform Dec Making. 2013;13 Suppl 2:S10.
25. • Volk R, Llewellyn-Thomas H, Stacey D, et al. Ten years of the International Patient Decision Aid Standards Collaboration: evolution of the core dimensions for assessing the quality of patient decision aids. BMC Med Inform Dec Making. 2013;13 Suppl 2: S1. An overview of a major international effort to develop evidence-based standards for decision support materials for patients.
26. Elwyn G, Scholl I, Tietbohl C, et al. Many miles to go..." a systematic review of the implementation of patient decision support interventions into routine clinical practice. BMC Med Inform Dec Making. 2013;13 Suppl 2:S14.
27. Bernhard J, Butow P, Aldridge J, et al. Communication about standard treatment options and clinical trials: can we teach doctors new skills to improve patient outcomes? Psychooncology. 2012;21:1265-74.
28. Légaré F, Ratté S, Stacey D, et al. Interventions for improving the adoption of shared decision-making by healthcare professionals. Cochrane Database Syst Rev. 2010;5:CD006732. doi:10.1002/ 14651858.CD006732.pub2.
29. Entwistle VA, Cribb A. Enabling people to live well: fresh thinking about collaborative approaches to care for people with long term conditions. London: The Health Foundation; 2013.
30. Politi MC, Dizon DS, Frosch DL, et al. Importance of clarifying patients' desired role in shared decision-making to match their level of engagement with their preferences. BMJ. 2013;347:f7066.
31. Cribb A, Entwistle VA. Shared decision-making: trade-offs between narrower and broader conceptions. Health Expect. 2011;14:210-9.
32. Donetto S, Cribb A. Researching involvement in health care practices: interrupting or reproducing medicalization? J Eval Clin Pract. 2011;17:907-12.
33. Joseph-Williams N, Elwyn G, Edwards A. 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. 2014;94:291-309.
34. Frosch DL, May SG, Rendle KA, et al. Authoritarian physicians and patients' fear of being labelled 'difficult' among key obstacles to shared decision-making. Health Aff. 2012;31:1030-8.
35. Entwistle VA, Prior M, Skea ZC, Francis J. Involvement in decision-making: a qualitative investigation of its meaning for people with diabetes. Soc Sci Med. 2008;66:362-75.
36. Entwistle VA, Cribb A, Watt IS. Shared decision making: enhancing clinical relevance. J R Soc Med. 2012;105:416-21.
37. Pieters HC, Heilemann MV, Maliski S, et al. Instrumental relating and treatment decision-making among older women with early stage breast cancer. Oncol Nurs Forum. 2011;39:E10-9.
38. Sinding C, Hudak P, Wiernikowski J, et al. I like to be an informed person but..." negotiating responsibility for treatment decisions in cancer care. Soc Sci Med. 2010;71:1094-101.
39. O'Brien MA, Charles C, Whelan TJ, et al. Women's perceptions of their involvement in treatment decision-making for early stage breast cancer. Support Care Cancer. 2013;21:1717-23.
40. O'Brien MA, Ellis PM, Whelan TJ, et al. Physician related facilitators and barriers to patient involvement in treatment decision making in early stage breast cancer: perspectives of physicians and patients. Health Expect. 2011;16:373-84.
41. Mendick N, Young B, Holcombe C, et al. The ethics of responsibility and ownership in decision-making about treatment for breast cancer: triangulation of consultation with patient and surgeon perspectives. Soc Sci Med. 2010;70:904-11.
42. • Swainston K, Campbell C, van Wersche, et al. Treatment decision-making in breast cancer: a longitudinal exploration of women's experiences. Br J Health Psychol. 2012;17:155-70. A recent example of a qualitative study illustrating women's appreciation of treatment recommendations from multidisciplinary teams when these are given with explanations and scope for discussion.
43. Pass M, Belkora J, Moore D, et al. Patient and observer ratings of physician shared decision-making behaviours in breast cancer consultations. Patient Educ Couns. 2012;88:93-9.
44. Epstein RM, Street Jr RL. Shared mind: communication, decision making and autonomy in serious illness. Ann Fam Med. 2011;9:454-61.
45. Smith A, Juraskova I, Butow P, et al. Sharing vs caring: the relative impact of sharing decisions versus managing emotions on patient outcomes. Patient Educ Couns. 2011;82:233-9.
46. Entwistle VA, Carter SM, Cribb A, McCaffery KM. Supporting patient autonomy: the importance of clinical relationships. J Gen Int Med. 2010;25:741-5.
47. Wyatt KD, Branda ME, Anderson RT, et al. Peering into the black box: a meta-analysis of how clinicians use decision aids during clinical encounters. Implement. 2014;9:26.
48. Frongillo M, Feibelmann S, Belkora J, et al. Is there shared decision-making when the provider makes a recommendation? Patient Educ Couns. 2013;90:69-73.
49. Sarradon-Eck A, Pellegrini I, Largillier R, et al. Self-management strategies adopted by breast cancer survivors to improve their adherence to tamoxifen. Breast J. 2012;18:389-91.
50. Spichiger E, Rieder E, Muller-Frohlich C, et al. Fatigue in patients undergoing chemotherapy, their self-care and the role of health professional: a qualitative study. Eur J Oncol Nurs. 2012;16:165-71.
51. Speck RM, DeMichele A, Farrar JT, et al. Scope of symptoms and self-management strategies for chemotherapy-induced peripheral neuropathy in breast cancer patients. Support Care Cancer. 2012;20:2433-9.
52. Ridner SH, Bonner CM, Deng J, et al. Voices from the shadows: living with lymphedema. Cancer Nurs. 2012;35:E18-26.
53. Thewes B, Bell ML, Butow P. Fear of cancer recurrence in early-stage breast cancer survivors: the role of metacognitive style and disease related factors. Psychooncology. 2013;22:2059-63.
54. Brennan ME, Butow P, Marven M, et al. Survivorship care after breast cancer treatment-experiences and preferences of Australian women. Breast. 2011;20:271-7.
55. Adirim T, Chafranskaia A, Nyhof-Young J. Investigating the impact of socioeconomic status on the effectiveness of a pamphlet on achieving and maintaining bone health in breast cancer survivors: a patient education resource development primer. J Cancer Educ. 2012;27:54-8.
56. Patel RA, Klasnja P, Hartzler A, et al. Probing the benefits of real-time tracking during cancer care. AMIA Annual Symposium Proceedings. 2012;1340-9.
57. Van den Berg SW, Gielissen MFM, Ottevanger PB, et al. Rationale of the BREAst cancer e-healTH [BREATH] multicentre randomised controlled trial: an internet-based self-management intervention to foster adjustment after curative breast cancer by decreasing distress and increasing empowerment. BMC Cancer. 2012;12:394.
58. • Ruland CM, Maffei RM, Borosund E, et al. Evaluation of an eHealth application for personalized illness management support: cancer patients' use and appraisal of usefulness. Int J Med Inform. 2013;82:593-603. A description and initial evaluation of a comprehensive intervention to support women's ongoing management of their symptoms.
59. Ruland CM, Andersen T, Jeneson A, et al. Effects of an internet support system to assist cancer patients in reducing symptom distress: a randomized controlled trial. Cancer Nurs. 2013;36:6-17.
60. Greene J, Hibbard JH. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. J Gen Int Med. 2012;27:520-6.
61. Easton P, Entwistle VA, Williams B. How the stigma of low literacy can impair patient-professional interactions and affect health: insights from a qualitative investigation. BMC Health Serv Res. 2013;13:319.
62. McLay JS, Stewart D, George J, et al. Complementary and alternative medicines use by Scottish women with breast cancer. What, why and the potential for drug interactions? Eur J Clin Pharmacol. 2012;68:811-9.
63. Ernst E. Alternative treatments for breast cancer. Eur J Clin Pharmacol. 2012;68:453-4.
64. Yeom HE, Heidrich SM. Relationships between three beliefs as barriers to symptom management and quality of life in older breast cancer survivors. Oncol Nurs Forum. 2013;40:E108-18.
65. Clayton J, Natalia C, Butow P, et al. Physician endorsement alone may not enhance question-asking by advanced cancer patients during consultations about palliative care. Support Care Cancer. 2012;20:1457-64.
66. Dimoska A, Butow PN, Lynch J, et al. Implementing patient question-prompt lists into routine cancer care. Patient Educ Couns. 2012;86:252-8.
67. Walczak A, Mazer B, Butow P, et al. A question prompt list for patients with advanced cancer in the final year of life: development and cross-cultural evaluation. Palliat Med. 2013;27:779-88.
68. Spiegle G, Al-Sukhni E, Schmocker S, et al. Patient decision aids for cancer treatment: are there any alternatives? Cancer. 2013;119:189-200.
69. Eggly S, Tkatch R, Penner LA, et al. Development of a question prompt list as a communication intervention to reduce racial disparities in cancer treatment. J Cancer Educ. 2013;28:282-9.
70. Fouquet C, Bredart A, Boueuc C. French adaptation of a question prompt list for cancer patients and their careers in supportive and palliative care. Bull Cancer. 2012;99:693-701.
71. • Sinding C, Miller P, Hudak P, et al. Of time and troubles: patient involvement and the production of health care disparities. Health. 2011;16:400-17. A careful qualitative investigation that highlights the social and material resources patients need to engage effectively in the management of their care.
72. Entwistle VA, Entwistle VA, McCaughan D, et al. Speaking up about safety concerns: a qualitative study of patients' views and experiences. Qual Saf Health Care. 2010;19:e33.
73. Doherty C, Stavropoulou C. Patients' willingness and ability to participate actively in the reduction of clinical errors: a systematic review. Soc Sci Med. 2012;75:257-63.
74. Hrisos S, Thomson R. Seeing it from both sides: do approaches to involving patients in improving their safety risk damaging the trust between patients and healthcare professionals? An interview study. PLoS One. 2013;8:e80759.