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10 Patient Involvement in Cancer Care: a Matter of Choice?
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Abstracts and Learning Outcomes / European Journal of Oncology Nursing 16S1 (2012) S1–S20
[4] Fong J, Wood F. Nanocrystalline silver dressings in wound management: a review. Int J Nanomedicine 2006; 1(4): 441–9. [5] Molan. Debridement of wounds with honey. Journal of Wound Technology 2009; 5: 12–7.
Parallel Session: Involving and Empowering Patients 9 Patient Reported Outcomes: Do They Involve and Empower? M. Wells1 . 1 University of Dundee, School of Nursing and Midwifery, Dundee, United Kingdom Over the last fifteen years there has been a huge growth in the development and use of patient reported outcomes, both in research and clinical practice. The increasing emphasis on patients’ perspectives of their own health is clearly vitally important to achieving patient-centred care, and recent policy guidance in the UK advocates the routine use of patient reported outcome measures (PROMS) as a basic indicator of the quality of care delivered to patients. In oncology research, we have already established a tradition of incorporating quality of life (QoL) measures into most clinical trials, and some experts argue that PROs represent a shift in name and identity rather than a different set of outcomes. So what do we actually mean when we refer to patient reported outcomes? Are they a genuine reflection of patients’ concerns and goals and do they tell us anything new? Does their use have an impact on clinical practice or are they merely a fashionable new label for quality of life research? This paper will provide an overview of the development of patient reported outcomes, discussing the nature and variety of PROMS currently used in oncology and debating the benefits, challenges and impact of this ‘new’ trend. Examples from clinical practice and recent research studies will be used to illustrate the value and also the potential limitations of patient reported outcomes, reflecting on the need to ensure that PROs are person- and not just patientcentred. Reference(s) Davies N (2009) Self-management programmes for cancer survivors: A structured review of outcome measures. Amended Version. Macmillan Cancer Support. http://www.ncsi.org.uk/wp-content/uploads/Outcome-Measures-for -Evaluating-Cancer-Aftercare.pdf McKenna S (2011) Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science. BMC Medicine 2011, 9: 86 http://www.biomedcentral.com/1741-7015/9/86 Proquolid, the Patient-Reported Outcomes Database. http://www.proqolid.org/
10 Patient Involvement in Cancer Care: a Matter of Choice? V. Entwistle1 . 1 University of Dundee, Social Dimensions of Health Institute (SDHI), Dundee, United Kingdom There is a sense in which people with cancer are ‘of course’ involved in their treatment and care. In recent decades, there has been a growing interest in enabling people to be more actively involved than they have been previously. An important set of policies, strategies and interventions have emerged that emphasise and attempt to harness people’s potential to contribute to their own care, and particularly to decisions that affect their treatment. Efforts to promote shared decision-making or patient choice can be understood as attempts to counter tendencies for health services to do things to people rather than with them. They have understandably (and often usefully) emphasised that many people can and want to participate and to understand and do more for themselves in relation to their health and care than
health services have historically encouraged or allowed. Sometimes however, the forms of involvement that are advocated seem unrealistic or inappropriate for some patients and circumstances. In part this is because the discourse about autonomy that prevails in health care contexts has not kept up with important philosophical developments (Ells et al, 2011). In many health care contexts, reductionist understandings of respect for autonomy as respect for autonomous choices lead to a strong emphasis on ensuring people are informed about health care options and make their own ‘independent’ choices. These understandings reflect unwarranted assumptions about the kinds of ‘independence’ that people can achieve. They generate models of shared decision-making or patient choice that are challenging for patients and limit the kinds of support clinicians feel able to offer (Entwistle et al, 2010; Cribb and Entwistle, 2011). Their focus on task-oriented communication and discouragement of clinicians’ ‘interference’ with patients’ preferences tends to obscure the significance of the kinds of trusting relationships and ways of working with clinicians that patients value (Entwistle et al, 2008; Mendick et al, 2010). This paper will highlight the potential of relational understandings of autonomy to support more nuanced ideas about and assessments of the forms of patient involvement that clinicians might cultivate. It will stress the need to think about patient involvement as more than a matter of choice. Reference(s) Cribb A, Entwistle VA (2011). Shared decision making: Trade-offs between narrower and broader conceptions. Health Expectations, 14(2), 210–219. Ells C, Hunt MR, Chambers-Evans J (2011). Relational autonomy as an essential component of patient-centered care. International Journal of Feminist Approaches to Bioethics, 4(2): 79–101. Entwistle VA, Prior M, Skea ZC, Francis J (2008). Involvement in decisionmaking: a qualitative investigation of its meaning for people with diabetes. Social Science and Medicine, 66: 362–375. Entwistle VA, Carter SM, Cribb A, McCaffery KM (2010). Supporting patient autonomy: the importance of clinical relationships. Journal of General Internal Medicine, 25 (7): 741–5. Mendick N, Young B, Holcombe C, Salmon P (2010). The ethics of responsibility and ownership in decision making about treatment for breast cancer: triangulation of consultation with patient and surgeon perspectives. Social Science & Medicine, 70: 1904–11.
11 Internet-based Support for Patients With Cancer C. Ruland1 , E. Børøsund1 , T. Andersen1 , G. Grimsbø1 , S. Moore2 . 1 Oslo University Hospital, Center for Shared Decision Making and Collabortve Care Research, Oslo, Norway; 2 Case Western Reserve University, FPB School of Nursing, Cleveland OH, USA Introduction: Cancer patients often suffer from multiple, and frequently severe, symptoms, impaired functional status, complex emotional, psychosocial and existential issues, and substantial worries. Interactive health communication applications (IHCAs) that can provide cancer patients with assistance when and where they need it can be an important means for better illness management and self-management. Nurses can play a crucial role in providing patient-centered care through IHCAs because they have a special focus on supporting patients in illness management and self-care. WebChoice is an IHCA that allows cancer patients to monitor their symptoms and problems, currently and over time; provides individually tailored information and self-management support; e-communication with expert cancer nurses; and an e-forum for group discussion with other patients. In this presentation we summarize the results of a randomized, controlled trial RCT to test the effects of WebChoice on symptom distress, depression, self-efficacy, HRQoL, and social support; evaluations of patients’ perceived usefulness; and analysis of messages and questions patients sent to cancer nurses through WebChoice.
Abstracts and Learning Outcomes / European Journal of Oncology Nursing 16S1 (2012) S1–S20
[4] Fong J, Wood F. Nanocrystalline silver dressings in wound management: a review. Int J Nanomedicine 2006; 1(4): 441–9. [5] Molan. Debridement of wounds with honey. Journal of Wound Technology 2009; 5: 12–7.
Parallel Session: Involving and Empowering Patients 9 Patient Reported Outcomes: Do They Involve and Empower? M. Wells1 . 1 University of Dundee, School of Nursing and Midwifery, Dundee, United Kingdom Over the last fifteen years there has been a huge growth in the development and use of patient reported outcomes, both in research and clinical practice. The increasing emphasis on patients’ perspectives of their own health is clearly vitally important to achieving patient-centred care, and recent policy guidance in the UK advocates the routine use of patient reported outcome measures (PROMS) as a basic indicator of the quality of care delivered to patients. In oncology research, we have already established a tradition of incorporating quality of life (QoL) measures into most clinical trials, and some experts argue that PROs represent a shift in name and identity rather than a different set of outcomes. So what do we actually mean when we refer to patient reported outcomes? Are they a genuine reflection of patients’ concerns and goals and do they tell us anything new? Does their use have an impact on clinical practice or are they merely a fashionable new label for quality of life research? This paper will provide an overview of the development of patient reported outcomes, discussing the nature and variety of PROMS currently used in oncology and debating the benefits, challenges and impact of this ‘new’ trend. Examples from clinical practice and recent research studies will be used to illustrate the value and also the potential limitations of patient reported outcomes, reflecting on the need to ensure that PROs are person- and not just patientcentred. Reference(s) Davies N (2009) Self-management programmes for cancer survivors: A structured review of outcome measures. Amended Version. Macmillan Cancer Support. http://www.ncsi.org.uk/wp-content/uploads/Outcome-Measures-for -Evaluating-Cancer-Aftercare.pdf McKenna S (2011) Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science. BMC Medicine 2011, 9: 86 http://www.biomedcentral.com/1741-7015/9/86 Proquolid, the Patient-Reported Outcomes Database. http://www.proqolid.org/
10 Patient Involvement in Cancer Care: a Matter of Choice? V. Entwistle1 . 1 University of Dundee, Social Dimensions of Health Institute (SDHI), Dundee, United Kingdom There is a sense in which people with cancer are ‘of course’ involved in their treatment and care. In recent decades, there has been a growing interest in enabling people to be more actively involved than they have been previously. An important set of policies, strategies and interventions have emerged that emphasise and attempt to harness people’s potential to contribute to their own care, and particularly to decisions that affect their treatment. Efforts to promote shared decision-making or patient choice can be understood as attempts to counter tendencies for health services to do things to people rather than with them. They have understandably (and often usefully) emphasised that many people can and want to participate and to understand and do more for themselves in relation to their health and care than
health services have historically encouraged or allowed. Sometimes however, the forms of involvement that are advocated seem unrealistic or inappropriate for some patients and circumstances. In part this is because the discourse about autonomy that prevails in health care contexts has not kept up with important philosophical developments (Ells et al, 2011). In many health care contexts, reductionist understandings of respect for autonomy as respect for autonomous choices lead to a strong emphasis on ensuring people are informed about health care options and make their own ‘independent’ choices. These understandings reflect unwarranted assumptions about the kinds of ‘independence’ that people can achieve. They generate models of shared decision-making or patient choice that are challenging for patients and limit the kinds of support clinicians feel able to offer (Entwistle et al, 2010; Cribb and Entwistle, 2011). Their focus on task-oriented communication and discouragement of clinicians’ ‘interference’ with patients’ preferences tends to obscure the significance of the kinds of trusting relationships and ways of working with clinicians that patients value (Entwistle et al, 2008; Mendick et al, 2010). This paper will highlight the potential of relational understandings of autonomy to support more nuanced ideas about and assessments of the forms of patient involvement that clinicians might cultivate. It will stress the need to think about patient involvement as more than a matter of choice. Reference(s) Cribb A, Entwistle VA (2011). Shared decision making: Trade-offs between narrower and broader conceptions. Health Expectations, 14(2), 210–219. Ells C, Hunt MR, Chambers-Evans J (2011). Relational autonomy as an essential component of patient-centered care. International Journal of Feminist Approaches to Bioethics, 4(2): 79–101. Entwistle VA, Prior M, Skea ZC, Francis J (2008). Involvement in decisionmaking: a qualitative investigation of its meaning for people with diabetes. Social Science and Medicine, 66: 362–375. Entwistle VA, Carter SM, Cribb A, McCaffery KM (2010). Supporting patient autonomy: the importance of clinical relationships. Journal of General Internal Medicine, 25 (7): 741–5. Mendick N, Young B, Holcombe C, Salmon P (2010). The ethics of responsibility and ownership in decision making about treatment for breast cancer: triangulation of consultation with patient and surgeon perspectives. Social Science & Medicine, 70: 1904–11.
11 Internet-based Support for Patients With Cancer C. Ruland1 , E. Børøsund1 , T. Andersen1 , G. Grimsbø1 , S. Moore2 . 1 Oslo University Hospital, Center for Shared Decision Making and Collabortve Care Research, Oslo, Norway; 2 Case Western Reserve University, FPB School of Nursing, Cleveland OH, USA Introduction: Cancer patients often suffer from multiple, and frequently severe, symptoms, impaired functional status, complex emotional, psychosocial and existential issues, and substantial worries. Interactive health communication applications (IHCAs) that can provide cancer patients with assistance when and where they need it can be an important means for better illness management and self-management. Nurses can play a crucial role in providing patient-centered care through IHCAs because they have a special focus on supporting patients in illness management and self-care. WebChoice is an IHCA that allows cancer patients to monitor their symptoms and problems, currently and over time; provides individually tailored information and self-management support; e-communication with expert cancer nurses; and an e-forum for group discussion with other patients. In this presentation we summarize the results of a randomized, controlled trial RCT to test the effects of WebChoice on symptom distress, depression, self-efficacy, HRQoL, and social support; evaluations of patients’ perceived usefulness; and analysis of messages and questions patients sent to cancer nurses through WebChoice.