Exploration of shared decision making in oncology within the United States: a scoping review

Bennett, Rachel; DeGuzman, Pamela B.; LeBaron, Virginia; Wilson, Daniel T.; Jones, Randy

doi:10.1007/s00520-022-07556-8

Cited by 10 publications

(9 citation statements)

References 48 publications

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“…Our study reiterates those findings and also highlights the possibility of text summaries becoming “a voice” for older adults during consultations with their clinicians. Text summaries allow for better and more streamlined conversations with clinicians, thereby promoting shared decision-making [ 56 , 57 ]. It is important to note that the preferences and recommendations of our participants informed revisions of the app features and functionalities in the prototype iterations, and the current state of the app reflects the needs of its potential users.…”

Section: Discussionmentioning

confidence: 99%

Tailored Self-Management App to Support Older Adults With Cancer and Multimorbidity: Development and Usability Testing

Sien,

Kobekyaa,

Puts

et al. 2024

JMIR Aging

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Background Globally, cancer predominates in adults aged older than 60 years, and 70% of older adults have ≥1 chronic condition. Cancer self-management interventions can improve symptom management and confidence, but few interventions target the complex needs of older adults with cancer and multimorbidity. Despite growing evidence of digital health tools in cancer care, there is a paucity of theoretically grounded digital self-management supports for older adults. Many apps for older adults have not been co-designed with older adults to ensure that they are tailored to their specific needs, which would increase usability and uptake. Objective We aim to report on the user evaluations of a self- and symptom-management app to support older adults living with cancer and multimorbidity. Methods This study used Grey’s self-management framework, a design thinking approach, and involved older adults with lived experiences of cancer to design a medium-fidelity app prototype. Older adults with cancer or caregivers were recruited through community organizations or support groups to participate in co-designing or evaluations of the app. Data from interviews were iteratively integrated into the design process and analyzed using descriptive statistics and thematic analyses. Results In total, 15 older adults and 3 caregivers (n=18) participated in this study: 10 participated (8 older adults and 2 caregivers) in the design of the low-fidelity prototype, and 10 evaluated (9 older adults and 1 caregiver) the medium-fidelity prototype (2 older adults participated in both phases). Participants emphasized the importance of tracking functions to make sense of information across physical symptoms and psychosocial aspects; a clear display; and the organization of notes and reminders to communicate with care providers. Participants also emphasized the importance of medication initiation or cessation reminders to mitigate concerns related to polypharmacy. Conclusions This app has the potential to support the complex health care needs of older adults with cancer, creating a “home base” for symptom management and support. The findings from this study will position the researchers to conduct feasibility testing and real-world implementation.

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Section: Discussionmentioning

confidence: 99%

Tailored Self-Management App to Support Older Adults With Cancer and Multimorbidity: Development and Usability Testing

Sien,

Kobekyaa,

Puts

et al. 2024

JMIR Aging

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“…However, the levels of cancer literacy vary from country to country and region to region, and some populations lack systematic information about cancer treatment 13 . It has also been suggested that inequalities in the shared decision‐making (SDM) process among patients of different racial and ethnic backgrounds affect the quality of healthcare they receive 14 . Several barriers to SDM in oncology have been identified, including uncertainty in the treatment decision, concerns regarding adverse effects, and poor physician communication 15 .…”

Section: Introductionmentioning

confidence: 99%

Cross‐sectional study of therapy‐related expectations/concerns of patients with metastatic renal cell carcinoma and physicians in Japan

Kimura,

Fujii,

Osawa

et al. 2024

Cancer Medicine

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ObjectiveTo achieve patient‐centricity in metastatic renal cell carcinoma (mRCC) treatment, it is essential to clarify the differences in perspectives between patients and physicians. This cross‐sectional analysis of a web survey aimed to clarify the differences in expectations and concerns between mRCC patients and physicians regarding systemic mRCC therapy in Japan.MethodsSurveys from 83 patients and 165 physicians were analyzed.ResultsThe top three most significant differences in expectations of systemic therapy between patients and physicians (patient‐based physician value) were “Chance of achieving treatment‐free status” (−30.1%, p < 0.001), “Longer survival” (+25.8%, p < 0.001), and “Chance of eliminating all evidence of disease” (−25.6%, p < 0.001). The top three most significant differences in concerns for systemic therapy between patients and physicians (patient‐based physician value) were “Lack of efficacy” (+36.1%, p < 0.001), “Lack of knowledge of treatment” (−28.2%, p < 0.001), and “Daily activities affected by side effects” (+22.3%, p < 0.001). Diarrhea, fatigue/malaise, and nausea/vomiting were patients' most distressing adverse events; 50.6% of patients had difficulty telling their physicians about adverse events such as fatigue, anxiety, and depression.ConclusionsThis study demonstrated a gap between patients with mRCC and physicians in their expectations and concerns for systemic therapy. Japanese patients with mRCC suffer from a number of adverse events, some of which are not shared with physicians. This study highlights the importance of communicating well with patients in clinical practice to achieve patient‐centricity in systemic treatment for mRCC.

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“…For Patients, their treatment priorities and desired outcomes must guide treatment decisions and their modifications. Patient preferences, shared decision making, 7 and patient-reported outcomes are well known, beneficial con-cepts, but are not yet fully implemented in clinical practice. 8 Patient preferences are also key elements of patient-centered care and deserve a prominent place in the EHR.…”

Section: Introductionmentioning

confidence: 99%

The Voice of the Patient and the Electronic Health Record

2023

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The patient's voice, which we define as the words the patient uses found in notes and messages and other sources, and their preferences for care and its outcomes, is too small a part of the electronic health record (EHR). To address this shortcoming will require innovation, research, funding, perhaps architectural changes to commercial EHRs, and that we address barriers that have resulted in this state, including clinician burden and financial drivers for care. Advantages to greater patient voice may accrue to many groups of EHR users and to patients themselves. For clinicians, the patient's voice, including symptoms, is invaluable in identifying new serious illness that cannot be detected by screening tests, and as an aid to accurate diagnosis. Informaticians benefit from greater patient voice in the EHR because it provides clues not found elsewhere that aid diagnostic decision support, predictive analytics, and machine learning. Patients benefit when their treatment priorities and care outcomes considered in treatment decisions. What patient voice there is in the EHR today can be found in locations not usually used by researchers. Increasing the patient voice needs be accomplished in equitable ways available to people with less access to technology and whose primary language is not well supported by EHR tools and portals. Use of direct quotations, while carrying potential for harm, permits the voice to be recorded unfiltered. If you are a researcher or innovator, collaborate with patient groups and clinicians to create new ways to capture the patient voice, and to leverage it for good.

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Exploration of shared decision making in oncology within the United States: a scoping review

Cited by 10 publications

References 48 publications

Tailored Self-Management App to Support Older Adults With Cancer and Multimorbidity: Development and Usability Testing

Tailored Self-Management App to Support Older Adults With Cancer and Multimorbidity: Development and Usability Testing

Cross‐sectional study of therapy‐related expectations/concerns of patients with metastatic renal cell carcinoma and physicians in Japan

The Voice of the Patient and the Electronic Health Record

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