scholarly journals Cancer patients’ perspective on shared decision-making and decision aids in oncology

Author(s):  
Lena Josfeld ◽  
Christian Keinki ◽  
Carolina Pammer ◽  
Bijan Zomorodbakhsch ◽  
Jutta Hübner

Abstract Purpose Shared Decision-Making (SDM) enhances patients’ satisfaction with a decision, which in turn increases compliance with and adherence to cancer treatment. SDM requires a good patient-clinician relationship and communication, patients need information matching their individual needs, and clinicians need support on how to best involve the individual patient in the decision-making process. This survey assessed oncological patients’ information needs and satisfaction, their preferred information in patient decision aids (PDAs), and their preferred way of making decisions regarding their treatment. Methods Questionnaires were distributed among attendees of a lecture program on complementary and alternative medicine in oncology of which 220 oncological patients participated. Results Participants reported a generally high need for information—correlating with level of education—but also felt overwhelmed by the amount. The latter proved particularly important during consultation. Use of PDAs increased satisfaction with given information but occurred in less than a third of the cases. Most requested contents for PDAs were pros and cons of treatment options and lists of questions to ask. The vast majority of patients preferred SDM to deciding alone. None wanted their physician to decide for them. Conclusions There is a high demand for SDM but a lack of conclusive evidence on the specific information needs of different types of patients. Conversation between patients and clinicians needs encouragement and support. PDAs are designed for this purpose and have the potential to increase patient satisfaction. Their scarce use in consultations calls for easier access to and better information on PDAs for clinicians.

2021 ◽  
Author(s):  
Apurupa Ballamudi ◽  
John Chi

Shared decision-making (SDM) is a process in which patients and providers work together to make medical decisions with a patient-centric focus, considering available evidence, treatment options, the patient’s values and goals, and risks and benefits. It is important for all providers to understand how to effectively use SDM in their interactions with patients to improve patients’ experiences throughout their healthcare journey. There are strategies to improve communication between patients and their providers, particularly when communicating quantitative data, risks and benefits, and treatment options. Decision aids (DAs) can help patients understand complex medical information and make an informed decision. This review contains 9 figures, 4 tables and 45 references Key words: Shared decision-making, decision-making, communication, risk and benefit, patient-centered, health literacy, quality of life, decision aids, option grid, pictographs.


2018 ◽  
Vol 42 (4) ◽  
pp. 378-386 ◽  
Author(s):  
Matthew Quigley ◽  
Michael P Dillon ◽  
Stefania Fatone

Background: Shared decision making is a consultative process designed to encourage patient participation in decision making by providing accurate information about the treatment options and supporting deliberation with the clinicians about treatment options. The process can be supported by resources such as decision aids and discussion guides designed to inform and facilitate often difficult conversations. As this process increases in use, there is opportunity to raise awareness of shared decision making and the international standards used to guide the development of quality resources for use in areas of prosthetic/orthotic care. Objectives: To describe the process used to develop shared decision-making resources, using an illustrative example focused on decisions about the level of dysvascular partial foot amputation or transtibial amputation. Development process: The International Patient Decision Aid Standards were used to guide the development of the decision aid and discussion guide focused on decisions about the level of dysvascular partial foot amputation or transtibial amputation. Examples from these shared decision-making resources help illuminate the stages of development including scoping and design, research synthesis, iterative development of a prototype, and preliminary testing with patients and clinicians not involved in the development process. Conclusion: Lessons learnt through the process, such as using the International Patient Decision Aid Standards checklist and development guidelines, may help inform others wanting to develop similar shared decision-making resources given the applicability of shared decision making to many areas of prosthetic-/orthotic-related practice. Clinical relevance Shared decision making is a process designed to guide conversations that help patients make an informed decision about their healthcare. Raising awareness of shared decision making and the international standards for development of high-quality decision aids and discussion guides is important as the approach is introduced in prosthetic-/orthotic-related practice.


Author(s):  
Martin H.N. Tattersall ◽  
David W. Kissane

The respect of a patient’s autonomous rights within the model of patient-centred care has led to shared decision-making, rather than more paternalistic care. Understanding patient needs, preferences, and lifestyle choices are central to developing shared treatment decisions. Patients can be prepared through the use of question prompt sheets and other decision aids. Audio-recording of informative consultations further helps. A variety of factors like the patient’s age, tumour type and stage of disease, an available range of similar treatment options, and their risk-benefit ratios will impact on the use of shared decision-making. Modifiable barriers to shared decision-making can be identified. Teaching shared decision-making includes the practice of agenda setting, use of partnership statements, clarification of patient preferences, varied approaches to explaining potential treatment benefits and risks, review of patient values and lifestyle factors, and checking patient understanding–this sequence helps both clinicians and patients to optimally reach a shared treatment decision.


Rheumatology ◽  
2019 ◽  
Vol 59 (8) ◽  
pp. 2052-2061 ◽  
Author(s):  
Julia Spierings ◽  
Femke C C van Rhijn-Brouwer ◽  
Carolijn J M de Bresser ◽  
Petra T M Mosterman ◽  
Arwen H Pieterse ◽  
...  

Abstract Objectives To examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT). Methods A qualitative semi-structured interview study was done in patients before or after HSCT, or patients who chose another treatment than HSCT. Thematic analysis was used. Shared decision-making (SDM) was assessed with the 9-item Shared Decision Making Questionnaire (SDM-Q-9). Results Twenty-five patients [16 male/nine female, median age 47 (range 27–68) years] were interviewed: five pre-HSCT, 16 post-HSCT and four following other treatment. Whereas the SDM-Q-9 showed the decision-making process was perceived as shared [median score 81/100 (range 49–100)], we learned from the interviews that the decision was predominantly made by the rheumatologist, and patients were often steered towards a treatment option. Strong guidance of the rheumatologist was appreciated because of a lack of accessible, reliable and SSc-specific information, due to the approach of the decision-making process of the rheumatologist, the large consequence of the decision and the trust in their doctor. Expectations of outcomes and risks also differed between patients. Furthermore, more than half of patients felt they had no choice but to go for HSCT, due to rapid deterioration of health and the perception of HSCT as ‘the holy grail’. Conclusion This is the first study that provides insight into the decision-making process in dcSSc. This process is negatively impacted by a lack of disease-specific education about treatment options. Additionally, we recommend exploring patients’ preferences and understanding of the illness to optimally guide decision-making and to provide tailor-made information.


2018 ◽  
pp. 1-10 ◽  
Author(s):  
Anshu Ankolekar ◽  
Andre Dekker ◽  
Rianne Fijten ◽  
Adriana Berlanga

Shared decision making (SDM) and patient-centered care require patients to actively participate in the decision-making process. Yet with the increasing number and complexity of cancer treatment options, it can be a challenge for patients to evaluate clinical information and make risk–benefit trade-offs to choose the most appropriate treatment. Clinicians face time constraints and communication challenges, which can further hamper the SDM process. In this article, we review patient decision aids (PDAs) as a means of supporting SDM by presenting clinical information and risk data to patients in a format that is accessible and easy to understand. We outline the benefits and limitations of PDAs as well as the challenges in their development, such as a lengthy and complex development process and implementation obstacles. Lastly, we discuss future trends and how change on multiple levels—PDA developers, clinicians, hospital administrators, and health care insurers—can support the use of PDAs and consequently SDM. Through this multipronged approach, patients can be empowered to take an active role in their health and choose treatments that are in line with their values.


1997 ◽  
Vol 2 (2) ◽  
pp. 112-121 ◽  
Author(s):  
Angela Coulter

The traditional style of medical decision-making in which doctors take sole responsibility for treatment decisions is being challenged. Attempts are being made to promote shared decision-making in which patients are given the opportunity to express their values and preferences and to participate in decisions about their care. Critics of shared decision-making argue that most patients do not want to participate in decisions; that revealing the uncertainties inherent in medical care could be harmful; that it is not feasible to provide information about the potential risks and benefits of all treatment options; and that increasing patient involvement in decision-making will lead to greater demand for unnecessary, costly or harmful procedures which could undermine the equitable allocation of health care resources. This article examines the evidence for and against these claims. There is considerable evidence that patients want more information and greater involvement, although knowledge about the circumstances in which shared decision-making should be encouraged, and the effects of doing so, is sparse. There is an urgent need for more research into patients' information needs and preferences and for the development and evaluation of decision-support mechanisms to enable patients to become informed participants in treatment decisions.


Author(s):  
Vanesa Ramos-García ◽  
Amado Rivero-Santana ◽  
Andrea Duarte-Díaz ◽  
Lilisbeth Perestelo-Pérez ◽  
Wenceslao Peñate-Castro ◽  
...  

Shared decision making (SDM) aims to involve patients in the decisions about their care, considering their preferences, values and concerns about the different treatment options. However, research shows that people with mental health problems have considerable unmet information needs about their condition. This community-based cross-sectional study explores the SDM process and information needs among people with Generalized Anxiety Disorder (GAD), as an initial step in the design and development of a Patient Decision Aid for this population. Seventy participants completed an online survey with the Control Preference Scale, and questions about the perceived difficulty of past treatment decisions and the use of the Internet for searching for GAD-related information. Most participants preferred an active (42.9%) or collaborative role (41.4%) in the SDM process, and 53% did not perceive their preferred role. Information provided by healthcare professionals was considered insufficient by 28% of the sample, and over 30% reported using the Internet to look for GAD-related information at least once a week or more. The most relevant GAD-related information needs were general information (71.4%), information on self-help groups (65.7%), recommendations on how to face this disorder (61.4%) and information on treatment options (50%). Exploratory analyses showed that patients who perceived an active participation were more likely to search for information frequently (p = 0.038), and those who felt more involved than desired tended to search for more themes (p = 0.049). In summary, the study showed that a considerable percentage of GAD patients have unmet needs related to decision-making participation and information.


2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 34-34
Author(s):  
Toby Christopher Campbell ◽  
Erin Kennedy ◽  
Selina Schmocker

34 Background: Cancer treatment decision making involves timely, high-risk, shared decision-making conversations between patients, their families, and their oncologists. These conversations are a prime target for a carefully designed, easy to interpret approach to facilitate preference-sensitive decision-making. The TrialTALK approach has two core elements: a verbal approach and a pen & paper diagram. The diagram includes the diagnosis with prognostic implications, available treatment options along with estimates for efficacy and anticipated impact on daily life. The verbal conversation corresponds to the diagram and includes a phrase to encourage deliberation and empathic responses. Here, we report the results of a focus group conducted in Toronto comparing two approaches to a cancer decision making conversation. Methods: Our focus group was comprised of 9 patients, all with incurable malignancy. They observed a live reading of an actual transcript of a cancer treatment decision making conversation between a patient and oncologist who presented three options: observation, chemotherapy, and a clinical trial. The investigators re-organized the conversation, reusing as many words as possible, into the TrialTALK framework. No new information was introduced. After watching each scene, participants discussed and rated the conversation for information needs and indicated the decision. Results: Three (33%) said rated the standard conversation as meeting their informational needs while 7/9 (78%) reported needs were met by the designed approach. Decision making preferences following the conversations are shown in the table. Patients reported feeling the physician in the designed conversation was more prepared; they felt greater trust and confidence; they valued the paper diagram; they felt more empowered and engaged in the decision. Conclusions: A designed conversation may improve patient understanding, influence decision making, while also enhancing the patient-physician relationship. Clinical trial information: NCT03656276. [Table: see text]


2017 ◽  
Vol 2 (2) ◽  
pp. 84-87 ◽  
Author(s):  
Melissa J Armstrong

Shared decision-making (SDM) occurs when patients, families and clinicians consider patients’ values and preferences alongside the best medical evidence and partner to make the best decision for a given patient in a specific scenario. SDM is increasingly promoted within Western contexts and is also being explored outside such settings, including in China. SDM and tools to promote SDM can improve patients’ knowledge/understanding, participation in the decision-making process, satisfaction and trust in the healthcare team. SDM has also proposed long-term benefits to patients, clinicians, organisations and healthcare systems. To successfully perform SDM, clinicians must know their patients’ values and goals and the evidence underlying different diagnostic and treatment options. This is relevant for decisions throughout stroke care, from thrombolysis to goals of care, diagnostic assessments, rehabilitation strategies, and secondary stroke prevention. Various physician, patient, family, cultural and system barriers to SDM exist. Strategies to overcome these barriers and facilitate SDM include clinician motivation, patient participation, adequate time and tools to support the process, such as decision aids. Although research about SDM in stroke care is lacking, decision aids are available for select decisions, such as anticoagulation for stroke prevention in atrial fibrillation. Future research is needed regarding both cultural aspects of successful SDM and application of SDM to stroke-specific contexts.


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