Oncologists’ views on Expanded Access and Right-to-Try: The need for education and shared decision-making.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13603-e13603
Author(s):  
Zubin Master ◽  
Cambray Smith ◽  
Jeremiah Stout ◽  
Alex A. Adjei ◽  
Jan C. Buckner ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Physician Attitudes ◽  
Patient Choice ◽  
Cancer Center ◽  
Experimental Medicine ◽  
Shared Decision ◽  
Expanded Access ◽  
Patient Motivation ◽  
Experimental Treatments

e13603 Background: Over half of Americans report favoring access to experimental treatments even if they have yet to be proven either safe or effective, yet only 3-5% are enrolled in clinical trials and a fraction of a percent in expanded access. The Expanded Access (EA) program (aka “compassionate use”) and Right-to-Try (RTT) are parallel federal mechanisms that offer qualifying patients access to off-trial experimental treatments. Our study aimed to capture the views and experiences of oncologists on obtaining eligible medicine using the FDA’s EA and is the first to report findings on physician attitudes toward RTT. Methods: We conducted 21 semi-structured interviews and qualitative analysis of oncologists at a major cancer center with 3 main sites across the U.S. Participants were purposely selected to have experience with EA. Results: Oncologists’ considerations for offering EA options to patients were based on a sound scientific rationale, reasonable risk-benefit ratio, functional status of the patient, and patient motivation. Although oncologists’ experience positively correlated with level of ease in navigating EA, most remained largely unfamiliar with RTT. Only 4 oncologists had experience discussing RTT with patients and none had obtained an experimental therapeutic under this pathway. When informed about RTT, oncologists articulated 3 sets of concerns including limited safety and oversight, unclear structure and lack of requirements to collect and report data, and the potential for inflating patient expectations. Published work by others have shown that patients desire experimental options to be offered and report that physicians do not always offer experimental medicine taking into account factors, such as, reimbursement. Given that oncologists may factor in variables such as patient motivation, and potentially affordability or health literacy, when considering whether experimental medicine is appropriate to offer their patient, there may be a need to develop a conversation aid so that clinically relevant options are presented to patients equitably and patient choice is enhanced. Conclusions: Further research to better understand patient perspectives and potential discordant views between patients and oncologists is needed in order to design shared decision-making tools to inform oncologists about off-trial preapproval pathways and help both oncologists and patients navigate the thorny issues of experimental oncology.

Physician attitudes toward shared decision making: A systematic review

2015 ◽  
Vol 98 (9) ◽  
pp. 1046-1057 ◽  
Author(s):  
Samantha Pollard ◽  
Nick Bansback ◽  
Stirling Bryan
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Shared Decision Making ◽  
Physician Attitudes ◽  
Shared Decision

Using technology to improve patient-provider communication and delivery of quality care.

2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 76-76
Author(s):  
Gabrielle Betty Rocque ◽  
Amanda Hathaway ◽  
Karina I. Halilova ◽  
Michele Gaguski ◽  
Kathryn A Thomas ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Treatment Plan ◽  
Planning System ◽  
Site Quality ◽  
Cancer Center ◽  
Shared Decision ◽  
Breast Cancer Patients ◽  
Provider Education

76 Background: Shared decision making (SDM) is a cornerstone of patient-centered care with 85-90% of breast cancer (BC) patients preferring an active or shared role in decision-making for breast surgery. SDM has been shown to, improve patients’ understanding of treatment options, result in more conservative care choices, and lead to lower healthcare costs. However, implementation is complex as numerous misconceptions exist. Methods: We are conducting a multi-site, quality improvement (QI) project to improve SDM behaviors and adherence to quality measures through a combination of provider education and use of a novel technology platform, the Carevive Care Planning System. This platform elicits patient preferences, concerns, history, and symptoms, and presents these data with algorithm-driven recommendations as part of a treatment plan. We report results from baseline provider surveys assessing perception and knowledge of SDM. Results: Baseline surveys from 28 participants were analyzed; 43% from a university based cancer center and 57% from community based cancer centers. Survey respondents were MDs (43%), NPs (7%) and RNs (46%), all specializing in Hematology and/or Oncology. When asked, “What percentage of breast cancer patients prefers an active or shared role in decision making?”, only 29% believed 85-90% of BC patients desired an active or shared role as suggested by surgical literature; 43% believed between 55-70% of patients wanted to be engaged in decision-making. Commonly reported barriers to SDM are shown in the table below. Conclusions: Physicians may underestimate patient’s desire to participate in shared decision-making. The barriers to implementing SDM in oncology practice will likely require multi-faceted interventions to overcome. We aim to address these gaps through an intervention aimed at enhancing knowledge and patient-provider engagement through treatment summaries. [Table: see text]

Advance care planning preferences in Hispanic population with cancer in the Bronx.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 6-6
Author(s):  
Jhosselini Cardenas Mori
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Medical Information ◽  
Medical Center ◽  
Treatment Options ◽  
Cancer Center ◽  
Decision Making Process ◽  
Shared Decision ◽  
Hispanic Patients ◽  
Disclosure Of Diagnosis

6 Background: We aim to explore medical information-sharing and decision-making preferences of Hispanic patients in the Bronx. Methods: We are recruiting cancer patients who self-identify as Hispanic and are waiting at the oncology clinic at Montefiore Medical Center Cancer Center before an appointment. Results: To date we have interviewed 110 patients. The majority (60, 52.6%) preferred shared decision-making with their doctors, families or both, while 45 (39.5%) had an active decision-making style. A minority (9, 7.9%) had a passive decision-making style, deferring to their families and only 1 (0.9%) had a passive decision-making style deferring to the physician. The only demographic characteristic that was associated with decision-making preference was language; those who are English-speaking were more likely to endorse an active decision-making style (Chi2 = 7.06, p = 0.029) and less likely to endorse shared decision-making (Chi2 = 6.33, p = 0.042). The majority of patients agreed or strongly agreed that they wanted to hear all of the information regarding their diagnosis, treatment options, treatment expectation and treatment risks and benefits. Conclusions: These results confirm our hypothesis that most Hispanic patients prefer either an active or shared decision-making process rather than a passive decision-making process. Most patients prefer disclosure of diagnosis, prognosis and plan.

Use and usefulness of the “know yourself” tool in outpatient cancer care.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e21558-e21558
Author(s):  
Zackary Berger ◽  
Pooja Yesantharao ◽  
Alice Zhou ◽  
Amanda Blackford ◽  
Thomas J. Smith ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Tool Use ◽  
Patient Preference ◽  
Cancer Care ◽  
Preference Assessment ◽  
Cancer Center ◽  
Shared Decision ◽  
Cancer Types ◽  
National Coalition

e21558 Background: Patient-physician communication is important to cancer care. The National Coalition for Cancer Survivorship developed the Know Yourself Tool, a 2-page form, to improve patients’ understanding of goals of care and clinicians’ understanding of patients’ priorities/expectations. We assessed the Tool’s use and usefulness. Methods: This mixed-methods study at an academic cancer center recruited 1 medical, 1 radiation, and 1 surgical oncologist for each of 5 cancer types: breast, lung, gastrointestinal, genitourinary, head & neck. For each clinician (n = 15), we recruited 2 control patients to observe usual care (n = 30) and then 4 intervention patients who were provided the Tool (n = 60); eligible patients were at a decision point in their care. Data were collected for the decision making visit via patient and physician post-visit surveys analyzed descriptively and visit recordings/transcripts to analyze: 1) option presentation 2) patient preference assessment 3) shared decision making elements 4) patient question asking opportunities. Results: Of 90 patients, 39 (43%) were female and 75 (83%) were white. Of the 60 intervention patients, 42 (70%) completed a post-visit survey: 15 (36% of respondents) reported using the Tool and 13 (31%) discussing the Tool. Nearly half (49%) reported the Tool helped them prepare for follow-up visits and know the importance of their perspective in decision making. Patients reported the Tool was easy to use (76%) and would recommend the Tool to others (52%). Clinicians reported on Tool use for 24 visits, finding it most helpful in identifying areas of concern (74%). Based on visit transcripts, physicians were more likely to describe certain options as more appropriate than others with intervention vs control patients. However, physicians were less likely to assess patient preference, engage in shared decision making behaviors, and provide opportunities for patients to ask questions with intervention vs control patients. Conclusions: Use and usefulness of the Know Yourself Tool was limited. Further work should identify barriers to Tool use, determine if there are specific subgroups for whom the Tool would be more useful, and further elucidate how the Tool affects patient-clinician interactions.

Expanding the concept of shared decision making for mental health: systematic search and scoping review of interventions

2017 ◽  
Vol 22 (3) ◽  
pp. 191-213 ◽  
Author(s):  
Yaara Zisman-Ilani ◽  
Erin Barnett ◽  
Juliette Harik ◽  
Anthony Pavlo ◽  
Maria O’Connell
Keyword(s):  
Mental Health ◽  
Decision Making ◽  
Shared Decision Making ◽  
Information Exchange ◽  
Skills Training ◽  
Essential Elements ◽  
Central Component ◽  
Shared Decision ◽  
Content Type ◽  
Patient Motivation

Purpose Much of the existing literature on shared decision making (SDM) in mental health has focused on the use of decision aids (DAs). However, DAs tend to focus on information exchange and neglect other essential elements to SDM in mental health. The purpose of this paper is to expand the review of SDM interventions in mental health by identifying important components, in addition to information exchange, that may contribute to the SDM process in mental health. Design/methodology/approach The authors conducted a systematic literature search using the Ovid-Medline database with supplementary scoping search of the literature on SDM in mental health treatment. To be eligible for inclusion, studies needed to describe (in a conceptual work or development paper) or evaluate (in any type of research design) a SDM intervention in mental health. The authors included studies of participants with a mental illness facing a mental health care decision, their caregivers, and providers. Findings A final sample of 31 records was systematically selected. Most interventions were developed and/or piloted in the USA for adults in community psychiatric settings. Although information exchange was a central component of the identified studies, important additional elements were: eliciting patient preferences and values, providing patient communication skills training, eliciting shared care planning, facilitating patient motivation, and eliciting patient participation in goal setting. Originality/value The review indicates that additional elements, other than information exchange such as sufficient rapport and trusting relationships, are important and needed as part of SDM in mental health. Future SDM interventions in mental health could consider including techniques that aim to increase patient involvement in activities such as goal settings, values, and preference clarification, or facilitating patient motivation, before and after presenting treatment options.

Differences between women’s preferred and actual experience with ‘shared decision-making’: A mixed method study.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 34-34
Author(s):  
Deborah Ejem ◽  
J Nicholas Dionne-Odom ◽  
Danny Willis ◽  
Peter Kaufman ◽  
Laura Urquhart ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Metastatic Breast ◽  
Treatment Decision ◽  
Cancer Center ◽  
Decision Making Process ◽  
Shared Decision ◽  
Treatment Decision Making ◽  
Actual Experience ◽  
Decision Making Processes

34 Background: Women with metastatic breast cancer (MBC) face numerous treatment and ACP decisions along their illness trajectory. We aimed to explore the treatment and ACP decision-making processes and decision support needs of women with MBC. Methods: Convergent, parallel mixed methods study (9/08-7/09). Sample included women with MBC managed by 3 breast oncologists at the Norris Cotton Cancer Center, Lebanon, NH. Participants completed a semi-structured interview and standardized decision-making instruments (decision control preferences) at study enrollment (T1; n = 22) and when they faced a decision point or 3 months later (T2; n = 19), whichever came first. Results: Participants (n = 22) where all white, averaged 62 years and were mostly married (54%), retired (45%), had a ≥ bachelor’s degree (45%), and had incomes > $40,000 (50%). On the control preferences scale, most women reported a preference for a ‘shared decision’ with clinician (T1 = 14 (64%) vs T2 = 9 (47%)) compared to making the decision themselves (T1 = 6 (27%) vs T2 = 6 (32%)), or delegating the decision to their doctor (T1 = 2 (9%) vs T2 = 4 (21%)). In semi-structured interviews about their actual treatment decision-making experience, women described experiencing a passive or delegated rather than a shared decision-making process. Conversely, women described a much more active ACP decision-making process that was often shared with family rather than their oncologists. Conclusions: Women selected a “shared” process using a validated tool; however their descriptions of the treatment decision-making processes were inconsistent with their actual experience, which was a more passive process in which they followed the oncologists’ treatment suggestions.

Shared Decision Making, Paternalism and Patient Choice

2009 ◽  
Vol 18 (1) ◽  
pp. 60-84 ◽  
Author(s):  
Lars Sandman ◽  
Christian Munthe
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Patient Choice ◽  
Shared Decision

Diagnostic and prognostic awareness among patients with metastatic solid cancer in a public cancer center in Mexico.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 42-42
Author(s):  
Mirza Alcalde Castro ◽  
Yanin Chavarri Guerra ◽  
Wendy Alicia Ramos-Lopez ◽  
Alfredo Covarrubias-Gómez ◽  
Sofia Sanchez ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Mexico City ◽  
Metastatic Cancer ◽  
Significant Proportion ◽  
Cancer Center ◽  
Physician Communication ◽  
Solid Cancer ◽  
Shared Decision ◽  
Diagnosis And Prognosis

42 Background: Patient awareness regarding diagnosis and prognosis may lead to improved treatment shared decision making and improve satisfaction with treatment choices. We assessed the diagnostic and prognostic awareness among newly diagnosed patients with metastatic solid tumors in a public cancer center in Mexico City. Methods: Patients with metastatic cancer enrolled in a randomized clinical trial of patient navigation to improve access to supportive care in a public cancer center in Mexico City (NCT03293849) were included. At baseline, demographic, social, and clinical characteristics were collected. Patients answered open-ended questions regarding knowledge about their diagnosis and prognosis, as well as on patient-physician communication. We analyzed prognostic and diagnostic awareness using descriptive statistics, and explored if patients reporting worse patient-physician communication were less aware of their diagnosis and prognosis. Results: 125 patients were included between 08/17 and 04/18. Median age was 61 years (range 23-93; 52% male); 88.8% lived in urban areas; 41.6% had less than high school education; and 57.6% were married or partnered. 61% had gastrointestinal, 14% genitourinary, and 25% other tumors. Although all patients had had at least one consultation with an oncologist, 3% did not know what their diagnosis was. 77% of patients considered they had prognostic awareness; however, only 14% considered that their disease had a bad prognosis, and 2% considered they could be cured. 6.5% of the patients believed the information given by their oncologist was insufficient, and 8% felt they had trouble getting information about their disease. We found no statistically significant relationship between perceived barriers to patient-physician communication and diagnostic (p = 0.28) or prognostic (p = 0.18) awareness. Conclusions: Although most patients understood their oncologic diagnosis, a significant proportion were unaware of their prognosis. Communication strategies, tailored to the specific characteristics of each patient population and aimed at improving prognostic awareness, are fundamental for optimal shared decision making.

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