Speaking Up: How Patient and Physician Voices Shaped a Trial to Improve Goals-of-Care Discussions

Solomon, Rachel; Smith, Cardinale B.; Kallio, Jay; Fenollosa, Amy; Benerofe, Barbara; Jones, Laurence; Adelson, Kerin B.; Gonsky, Jason; Messner, Carolyn; Bickell, Nina A.

doi:10.1007/s40271-017-0226-z

Cited by 9 publications

(11 citation statements)

References 22 publications

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“…[ 67 , 68 ], role description templates [ 68 ], structures for consensus decision making [ 69 ], and methods for reimbursement and compensation to patient partners [ 70 – 73 ]. Mutual respect was offered through documents summarizing the evidence to facilitate team discussions [ 74 ], through communications skills training modules [ 75 ], and through newsletter templates. Co-building was evidenced through partnership surveys [ 76 , 77 ] and documents that categorized various patient partner roles in governance, team meetings/working groups [ 74 , 78 ], workshops/conference attendance [ 74 ], authorship, and in identifying patient-reported outcomes (PROs) [ 79 ].…”

Section: Resultsmentioning

confidence: 99%

Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids

Parry

Bjørnnes

Toupin‐April

et al. 2020

Patient

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Background A 2017 systematic review suggested patient engagement in clinical trials has been limited, with little active engagement in trial design or data analysis, interpretation or dissemination. Additionally, there remains limited sex/gender reporting in clinical trial research. Objectives The overall goal of this project was to disseminate sex/gender knowledge and build capacity for patient engagement in clinical trials. Specific objectives were to (1) create capacity and identify opportunities for patient engagement in clinical trials and sponsor-or investigator-led activities (e.g. clinical trial design and conduct); and (2) enhance new/early investigator sex/gender knowledge and skills related to patient-oriented research (POR). Methods We used the Canadian Institutes of Health Research Strategy for Patient-Oriented Research (SPOR) Capacity Development Framework and the SPOR Patient Engagement Framework to guide three phases of this project: (1) conduct a scoping review using methods described by the Evidence for Policy and Practice Information (EPPI) and the Coordinating Centre at the Institute of Education (Phase 1); (2) host a 1-day POR consultation workshop (Phase 2); and (3) deliver a new/early investigator POR training day (Phase 3). Six electronic databases (CINAHL, MEDLINE, EMBASE, PsychInfo, the Cochrane Library, and AMED) were searched from 1996 using keywords and Medical Subject Heading (MeSH) terms in accordance with the International Association for Public Participation (IAP2) and the search criteria in the bibliographic databases. Standard approaches were used to search the grey literature. Results A total of 79 studies and over 150 websites were subject to data abstraction by team members, capturing information on sex/gender and SPOR's patient engagement guiding principles of inclusiveness, support, mutual respect, and co-building. Results were presented to 32 key stakeholders at the consultation workshop and input was sought on next steps using nominal group techniques. Based on the plethora of existing POR resources, relevant POR information from the scoping review was collated into two decision aids (patient and investigator) to determine readiness to engage with/as a patient partner in a clinical trial. The decision aids were presented at a POR training day with 88 new/early investigators, clinicians, patient partners and decision makers. The decision aids showed 'good' usability, assessed using the System Usability Scale (SUS). Attendees thought the decision aids were engaging, they increased their understanding of sex/gender, patient engagement and POR, and they would recommend them to others. POR principles and practices were integrated across all phases of the project. Patient partners (1) identified research priorities/search terms; (2) collected/analyzed data; (3) designed the patient partner decision aid; and (4) disseminated the results through presentation. Conclusion Our digital patient partner and investigator decision aids are the first to provide information technology to d...

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Section: Resultsmentioning

confidence: 99%

Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids

Parry

Bjørnnes

Toupin‐April

et al. 2020

Patient

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show abstract

Section: Resultsmentioning

confidence: 99%

“…The data, as summarized in Table 1 , exhibit a range of pragmatic clinical trials conducted between 2004 and 2022, located primarily in the United States (three studies) and the United Kingdom (three studies), with one study in Denmark [ 26 , 27 , 28 , 29 , 30 , 31 , 32 ]. The trials involved patients with different cancer types, including breast (three studies), esophageal (one study), and high-grade non-muscle-invasive bladder cancer (one study); one study included multiple cancer types, namely breast, colorectal, and non-small cell lung [ 26 , 27 , 28 , 29 , 30 , 31 , 32 ]. The patient populations in these trials consisted of individuals at different cancer stages, including early stages (two studies), advanced stages (two studies), and mixed stages (one study), as well as cases where the stage was not specified (two studies) [ 26 , 27 , 28 , 29 , 30 , 31 , 32 ].…”

Section: Resultsmentioning

confidence: 99%

“…The trials involved patients with different cancer types, including breast (three studies), esophageal (one study), and high-grade non-muscle-invasive bladder cancer (one study); one study included multiple cancer types, namely breast, colorectal, and non-small cell lung [ 26 , 27 , 28 , 29 , 30 , 31 , 32 ]. The patient populations in these trials consisted of individuals at different cancer stages, including early stages (two studies), advanced stages (two studies), and mixed stages (one study), as well as cases where the stage was not specified (two studies) [ 26 , 27 , 28 , 29 , 30 , 31 , 32 ]. The study designs employed included pragmatic clinical trials (six studies) and a pragmatic observational trial (one study).…”

Section: Resultsmentioning

confidence: 99%

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Beyond Participation: Evaluating the Role of Patients in Designing Oncology Clinical Trials

Farah,

Kenney,

Kica

et al. 2023

Current Oncology

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Historically, subject matter experts and healthcare professionals have played a pivotal role in driving oncology clinical trials. Although patients have been key participants, their deliberate and active contribution to the design and decision-making process has been limited. This scoping review aimed to examine the existing literature to scope the extent of active patient engagement in the design of oncology clinical trials and its corresponding influence on trial outcomes. We conducted a systematic search using two databases, namely MEDLINE (Ovid) and EMBASE, to identify relevant studies exploring patient engagement in cancer-related clinical research design. We identified seven studies that met the eligibility criteria. The studies highlighted the benefits of active patient involvement, such as improved recruitment strategies, and the attainment of more patient-centered trial outcomes. The influence of patient involvement varied from tangible developments like patient-friendly resources to indirect impacts like improved patient experiences and potentially higher adherence to trial intervention. The future of clinical trials should prioritize patients’ values and perspectives, with regulatory bodies fostering these practices through clear guidelines. As the concept of patient centricity takes root in oncology research, the involvement of patients should evolve beyond mere participation.

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“…Indeed, results from the Coping with Cancer study suggested that patients with such psychosocial factors as emotional numbness may have their fears rather exacerbated by end-of-life discussions, resulting in unreasonable demands of care and life-maintaining treatments [49]. Educational initiatives to improve communication and enhance implication in decision-making among seriously ill patients are therefore needed and are currently being developed in protocols interestingly involving both healthcarers and patients/caregivers perspectives [50][51][52]. Since this module provides additional information on patient preferences for anticipation, a theme that is not addressed by the API, and since it is well accepted by patients, our clinical vignette can be used in conjunction with the API, as a comprehensive scale to guide doctor-patient communication in the context of advanced cancer.…”

Section: Discussionmentioning

confidence: 99%

Validity of the French version of the Autonomy Preference Index and its adaptation for patients with advanced cancer

et al. 2020

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BackgroundWhile patient-centered care is recommended as a key dimension for quality improvement, in case of serious illness, patients may have different expectations regarding information and participation in medical decision-making. In oncology, anticipation of disease worsening remains difficult, especially when patient's preferences towards prognosis medical information are unclear. Valid tools to explore patients' preferences could help targeting end-of-life discussions, which have been shown to decrease aggressiveness of end-of-life care. Our aim was to establish the validity and reliability of the French version of the Autonomy Preference Index (API) among patients with incurable cancer and in primary care setting. Three supplementary items were specifically developed to evaluate preparedness to anticipate disease deterioration among patients with incurable cancer. OPEN ACCESS Citation: Colombet I, Rigal L, Urtizberea M, Vinant P, Rouquette A (2020) Validity of the French version of the Autonomy Preference Index and its adaptation for patients with advanced cancer. PLoS ONE 15(1): e0227802. https://doi.org/10. ConclusionThe French version of the API was found valid and reliable for use in general practice and oncology settings. The additional items on patient preparedness to anticipate disease deterioration can be of interest to ensure that patient values guide all end-of-life clinical decisions.API validity in oncology and general practice settings PLOS ONE | https://doi.org/10.

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Speaking Up: How Patient and Physician Voices Shaped a Trial to Improve Goals-of-Care Discussions

Cited by 9 publications

References 22 publications

Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids

Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids

Beyond Participation: Evaluating the Role of Patients in Designing Oncology Clinical Trials

Validity of the French version of the Autonomy Preference Index and its adaptation for patients with advanced cancer

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