Decision Aids Can Support Cancer Clinical Trials Decisions: Results of a Randomized Trial

Politi, Mary C.; Kuzemchak, Marie D.; Kaphingst, Kimberly A.; Perkins, Hannah; Liu, Jingxia; Byrne, Margaret M.

doi:10.1634/theoncologist.2016-0068

Cited by 44 publications

(20 citation statements)

References 19 publications

(27 reference statements)

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“…These proposals include using novel communication strategies (e.g. audio or video platforms), decision-aids and question prompt lists [11,17,[40][41][42][43]. It has also been suggested that information could be given out in smaller quantities, over varied periods, and that investigators should systematically ask individuals to recall the information given when decisions are confirmed, and consent taken [36].…”

Section: Discussionmentioning

confidence: 99%

The challenges of making informed decisions about treatment and trial participation following a cancer diagnosis: a qualitative study involving adolescents and young adults with cancer and their caregivers

Hart

Cameron

Cowie

et al. 2020

BMC Health Serv Res

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Background: Limited attention has been paid to adolescents and young adults' (AYA's) experiences in the aftermath of a cancer diagnosis, despite this being a time when potentially life-changing decisions are made. We explored AYA's and caregivers' experiences of, and views about, making treatment and trial participation decisions following a cancer diagnosis, in order to understand, and help facilitate, informed treatment decision-making in this age group. Methods: Interviews were undertaken with 18 AYA diagnosed, or re-diagnosed, with cancer when aged 16-24 years, and 15 parents/caregivers. Analysis focused on the identification and description of explanatory themes. Results: Most AYA described being extremely unwell by the time of diagnosis and, consequently, experiencing difficulties processing the news. Distress and acceleration in clinical activity following diagnosis could further impede the absorption of treatment-relevant information. After referral to a specialist cancer unit, many AYA described quickly transitioning to a calm and pragmatic mind-set, and wanting to commence treatment at the earliest opportunity. Most reported seeing information about short-term side-effects of treatment as having limited relevance to their recovery-focused outlook at that time. AYA seldom indicated wanting to make choices about front-line treatment, with most preferring to defer decisions to health professionals. Even when charged with decisions about trial participation, AYA reported welcoming a strong health professional steer. Parents/caregivers attempted to compensate for AYA's limited engagement with treatment-relevant information. However, in seeking to ensure AYA received the best treatment, these individuals had conflicting priorities and information needs.

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Section: Discussionmentioning

confidence: 99%

The challenges of making informed decisions about treatment and trial participation following a cancer diagnosis: a qualitative study involving adolescents and young adults with cancer and their caregivers

Hart

Cameron

Cowie

et al. 2020

BMC Health Serv Res

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“…Of the small number of DAs that aim to improve decisionmaking for trial participation (rather than aiming to improve the presentation of information or mode of delivery) most focus on specific oncology trials [23]. These DAs show some potential promise in improving key decision outcomes such as knowledge, values clarification, and decision conflict, while not negatively impacting recruitment or intention to participate [20,21,24]. A recent systematic review of decision aids for trials only identified one study that evaluated the effectiveness of decision aids compared to standard information in the informed consent process for clinical trials [16].…”

Section: Methodsmentioning

confidence: 99%

Development of a decision support intervention for family members of adults who lack capacity to consent to trials

Shepherd

Wood

Griffith

et al. 2019

Preprint

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Background Informed consent is required for participation in clinical trials, however trials involving adults who lack capacity to consent require different enrolment processes. A family member usually acts as a proxy to make a decision based on the patient’s ‘presumed will’, but they can experience an emotional and decisional burden as a result. Decisions made on behalf of others are conceptually different from those we make for ourselves. Despite innovations to improve informed consent processes for research, including the development of decision aids, there are no interventions for proxies who arguably are faced with more complex decisions. This article outlines the development of a novel decision aid aimed at supporting families making decisions about research participation on behalf of an adult who lacks capacity to consent. Methods Decision support interventions should be developed using rigorous and evidence-based methods. This intervention was developed using the MRC guidance for the development of complex interventions, and a conceptual framework for the development and evaluation of decision aids for people considering taking part in a clinical trial. The intervention was informed by a systematic review and analysis of existing information provision. Previous qualitative research with families who had acted as proxies enabled the development of a theoretical framework to underpin the intervention. The intervention was iteratively developed in conjunction with lay advisors and relevant stakeholders. Results Previous research, theoretical frameworks, and decision aid development frameworks were used to identify and develop the intervention components. The decision aid includes information about the proxy’s role and uses a values clarification exercise and decision support methods to enable a more informed and better-quality decision. Stakeholders, including those representing implementers and receivers of the intervention, contributed to the design and comprehensibility of the decision aid and helped to ensure that it would be acceptable for use. Conclusions Frameworks for the development of decision aids for people considering participating in a clinical trial can be used to develop interventions for family members acting as proxy decision-makers. The decision support tool is acceptable to users but requires feasibility testing and outcome measure development prior to any evaluation of its effectiveness.

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“…It will include preference-clarifying components to assist users in their decision-making, and invitation of other members of one's family to help with difficult decisions and clarifications. A recent randomized control trial showed that a web-based decision aid performed better than a website in preparing patients for decision about clinical trial participation (Politi et al 2016).…”

Section: Proposed Solutionmentioning

confidence: 99%

Web-Based Interactive Tool to Support Shared Decision-Making in the Choice of Treatment for Advanced Pancreatic Cancer

Ezeh

2018

Electronic Workshops in Computing

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Pancreatic cancer currently has no cure in its advanced stage and often, systemic chemotherapy is used to improve survival and quality of life of patients. Chemotherapy treatments are available with varying degrees of benefits, harms, and uncertainties, and patients need to be aware of these characteristics and make informed choices or decide whether to avoid chemotherapy altogether. Web-based tools may help patients in making this informed choice with the help of their clinicians and relatives. Therefore, the aim of the study is to investigate the potential of a web-based interactive tool to support shared decision-making in the choice of treatment for people with advanced pancreatic cancer. A four-phase mixed methods paradigm has been adopted for the study. Participants will be clinicians (oncologists, clinical nurse specialists), people diagnosed with advanced (inoperable) pancreatic cancer, and relatives who support these patients. The first phase of the study identified 60 relevant citations on advanced pancreatic cancer treatment from four electronic databases from 1997 to 2018.

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Decision Aids Can Support Cancer Clinical Trials Decisions: Results of a Randomized Trial

Cited by 44 publications

References 19 publications

The challenges of making informed decisions about treatment and trial participation following a cancer diagnosis: a qualitative study involving adolescents and young adults with cancer and their caregivers

The challenges of making informed decisions about treatment and trial participation following a cancer diagnosis: a qualitative study involving adolescents and young adults with cancer and their caregivers

Development of a decision support intervention for family members of adults who lack capacity to consent to trials

Web-Based Interactive Tool to Support Shared Decision-Making in the Choice of Treatment for Advanced Pancreatic Cancer

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