Including narratives in health-care interventions is increasingly popular. However, narrative information may bias individual's decision making, resulting in patients making poorer decisions. This ...systematic review synthesises the evidence about the persuasiveness of narrative information on individuals' decision making. Seventeen studies met the review criteria; 41% of studies employed first person narration, 59% third person. Narrative information influenced decision making more than the provision of no additional information and/or statistically based information in approximately a third of the studies (5/17); studies employing first person narratives were twice as likely to find an effect. There was some evidence that narrative information encouraged the use of heuristic rather than systematic processing. However, there was little consistency in the methods employed and the narratives' content to provide evidence on why narratives affect the decision process and outcome, whether narratives facilitate or bias decision making, and/or whether narratives affect the quality of the decision being made. Until evidence is provided on why and how narratives influence decision making, the use of narratives in interventions to facilitate medical decision making should be treated cautiously.
MDT discussion is the gold standard for cancer care in the UK. With the incidence of cancer on the rise, demand for MDT discussion is increasing. The need for efficiency, whilst maintaining high ...standards, is therefore clear. Paper-based MDT quality assessment tools and discussion checklists may represent a practical method of monitoring and improving MDT practice. This reviews aims to describe and appraise these tools, as well as consider their value to quality improvement.
Medline, EMBASE and PsycInfo were searched using pre-defined terms. The PRISMA model was followed throughout. Studies were included if they described the development of a relevant tool, or if an element of the methodology further informed tool quality assessment. To investigate efficacy, studies using a tool as a method of quality improvement in MDT practice were also included. Study quality was appraised using the COSMIN risk of bias checklist or the Newcastle-Ottawa scale, depending on study type.
The search returned 7930 results. 18 studies were included. In total 7 tools were identified. Overall, methodological quality in tool development was adequate to very good for assessed aspects of validity and reliability. Clinician feedback was positive. In one study, the introduction of a discussion checklist improved MDT ability to reach a decision from 82.2 to 92.7%. Improvement was also noted in the quality of information presented and the quality of teamwork.
Several tools for assessment and guidance of MDTs are available. Although limited, current evidence indicates sufficient rigour in their development and their potential for quality improvement.
PROSPERO ID: CRD42021234326 .
People make numerous health-related choices each day: For example, deciding to brush one’s teeth or to eat well and healthy – or not to do these activities. To support complex decisions and ...subsequent behaviour change, both Behaviour Change Interventions (BCIs) and Patient Decision Aids (PtDAs) have been developed and evolved independently to support people in health-related decision making. In this paper, we critically review BCIs and PtDAs, examine their similarities and differences, and identify potential for integration of expertise to increase the benefits for people engaging with healthcare and health behaviours. The two approaches appear to mainly differ in terms of their (1) goals and foci, (2) theoretical basis, (3) development frameworks, (4) active ingredients and (5) effect evaluation. To facilitate the integration of scientific insights from these two fields, we recommend to (1) bring both fields together and promote interprofessional discussions, (2) train (health) professionals to recognise strengths of both approaches, (3) investigate the synergy of the two fields, (4) be prepared for and try to mitigate a culture shock when the fields start to interact. Knowledge generated by researching PtDAs could be used to facilitate decisional processes that enable patients to choose goals that are in line with their values and preferences, while insights from researching BCIs could be used to facilitate engagement with, and implementation of those goals. This integration could allow researchers and intervention providers to increase the benefits for people engaging with healthcare and health behaviours.
Abstract Objective To discuss whether using the International Patient Decision Aids Standards (IPDAS) Collaboration checklist as a gold standard to judge interventions’ quality is premature and ...potentially detrimental to the validity of resources designed to help patients make treatment choices. Methods Conceptual review integrating the science behind individuals’ decision making with the demands of designing complex, healthcare interventions. Results Patient decision aids are promoted as interventions to help professionals engage in shared and/or patient-centred care. The IPDAS domains were informed by experts’ opinions of best practice. Decision scientists study how individuals make decisions, what biases their choices and how best to support decisions. There is debate from decision scientists about which component parts are the active ingredients that help people make decisions. Conclusions Interventions to help patients make choices have different purposes, component parts and outcomes to those facilitating professional–patient communications. The IPDAS checklist will change to respond to new evidence from the decision sciences. Practice implications Adhering uncritically to the IPDAS checklist may reduce service variation but is not sufficient to ensure interventions enable good patient decision making. Developers must be encouraged to reason about the IPDAS checklist to identify those component parts that do (not) meet their intervention's purpose.
Patient decision aids (PDAs) are evidence-based tools designed to help patients make specific and deliberated choices among healthcare options. The International Patient Decision Aid Standards ...(IPDAS) Collaboration review papers and Cochrane systematic review of PDAs have found significant gaps in the reporting of evaluations of PDAs, including poor or limited reporting of PDA content, development methods and delivery. This study sought to develop and reach consensus on reporting guidelines to improve the quality of publications evaluating PDAs.
An international workgroup, consisting of members from IPDAS Collaboration, followed established methods to develop reporting guidelines for PDA evaluation studies. This paper describes the results from three completed phases: (1) planning, (2) drafting and (3) consensus, which included a modified, two-stage, online international Delphi process. The work was conducted over 2 years with bimonthly conference calls and three in-person meetings. The workgroup used input from these phases to produce a final set of recommended items in the form of a checklist.
The SUNDAE Checklist (Standards for UNiversal reporting of patient Decision Aid Evaluations) includes 26 items recommended for studies reporting evaluations of PDAs. In the two-stage Delphi process, 117/143 (82%) experts from 14 countries completed round 1 and 96/117 (82%) completed round 2. Respondents reached a high level of consensus on the importance of the items and indicated strong willingness to use the items when reporting PDA studies.
The SUNDAE Checklist will help ensure that reports of PDA evaluation studies are understandable, transparent and of high quality. A separate Explanation and Elaboration publication provides additional details to support use of the checklist.
Genetic testing is a key decision-making point for people with motor neuron disease (MND); to establish eligibility for clinical trials, better understand the cause of their condition, and confirm ...the potential risk to relatives, who may be able to access predictive testing. Given the wide-reaching implications of MND genetic and predictive testing, it is essential that families are given adequate information, and that staff are provided with appropriate training. In this report we overview the information resources available to people with MND and family members around genetic testing, and the educational and training resources available to staff, based on information obtained through a freedom of information request to UK-based NHS Trusts. MND Association resources were most commonly used in information sharing, though we highlight distinctions between neurology and genetics centers. No respondents identified comprehensive training around MND genetic testing. We conclude with practice implications and priorities for the development of resources and training.
Abstract
Background
Conservative management is recognized as an acceptable treatment for people with worsening chronic kidney disease; however, patients consistently report they lack understanding ...about their changing disease state and feel unsupported in making shared decisions about future treatment. The purpose of this review was to critically evaluate patient decision aids (PtDAs) developed to support patient–professional shared decision-making between dialysis and conservative management treatment pathways.
Methods
We performed a systematic review of resources accessible in English using environmental scan methods. Data sources included online databases of research publications, repositories for clinical guidelines, research projects and PtDAs, international PtDA expert lists and reference lists from relevant publications. The resource selection was from 56 screened records; 17 PtDAs were included. A data extraction sheet was applied to all eligible resources, eliciting resource characteristics, decision architecture to boost/bias thinking, indicators of quality such as International Standards for Patient Decision Aids Standards checklist and engagement with health services.
Results
PtDAs were developed in five countries; eleven were publically available via the Internet. Treatment options described were dialysis (n = 17), conservative management (n = 9) and transplant (n = 5). Eight resources signposted conservative management as an option rather than an active choice. Ten different labels across 14 resources were used to name ‘conservative management’. The readability of the resources was good. Six publications detail decision aid development and/or evaluation research. Using PtDAs improved treatment decision-making by patients. Only resources identified as PtDAs and available in English were included.
Conclusions
PtDAs are used by some services to support patients choosing between dialysis options or end-of-life options. PtDAs developed to proactively support people making informed decisions between conservative management and dialysis treatments are likely to enable services to meet current best practice.
Historic migration and the ever-increasing current migration into Western countries have greatly changed the ethnic and cultural patterns of patient populations. Because health care beliefs of ...minority groups may follow their religion and country of origin, inevitable conflict can arise with decision making at the end of life. The principles of truth telling and patient autonomy are embedded in the framework of Anglo-American medical ethics. In contrast, in many parts of the world, the cultural norm is protection of the patient from the truth, decision making by the family, and a tradition of familial piety, where it is dishonorable not to do as much as possible for parents. The challenge for health care professionals is to understand how culture has enormous potential to influence patients' responses to medical issues, such as healing and suffering, as well as the physician-patient relationship. Our paper provides a framework of communication strategies that enhance crosscultural competency within nephrology teams. Shared decision making also enables clinicians to be culturally competent communicators by providing a model where clinicians and patients jointly consider best clinical evidence in light of a patient's specific health characteristics and values when choosing health care. The development of decision aids to include cultural awareness could avoid conflict proactively, more productively address it when it occurs, and enable decision making within the framework of the patient and family cultural beliefs.
ObjectiveShared decision-making (SDM) supports patients to make informed and value-based decisions about their care. We are developing an intervention to enable healthcare professionals to support ...patients’ pulmonary rehabilitation (PR) decision-making. To identify intervention components we needed to evaluate others carried out in chronic respiratory diseases (CRDs). We aimed to evaluate the impact of SDM interventions on patient decision-making (primary outcome) and downstream health-related outcomes (secondary outcome).DesignWe conducted a systematic review using the risk of bias (Cochrane ROB2, ROBINS-I) and certainty of evidence (Grading of Recommendations Assessment, Development and Evaluation) tools.Data sourcesMEDLINE, EMBASE, PSYCHINFO, CINAHL, PEDRO, Cochrane Central Register of Controlled Trials, the International Clinical Trials Registry Platform Search Portal, ClinicalTrials.gov, PROSPERO, ISRCTN were search through to 11th April 2023.Eligibility criteriaTrials evaluating SDM interventions in patients living with CRD using quantitative or mixed methods were included.Data extraction and synthesisTwo independent reviewers extracted data, assessed risk of bias and certainty of evidence. A narrative synthesis, with reference to The Making Informed Decisions Individually and Together (MIND-IT) model, was undertaken.ResultsEight studies (n=1596 (of 17 466 citations identified)) fulfilled the inclusion criteria.Five studies included components targeting the patient, healthcare professionals and consultation process (demonstrating adherence to the MIND-IT model). All studies reported their interventions improved patient decision-making and health-related outcomes. No outcome was reported consistently across studies. Four studies had high risk of bias, three had low quality of evidence. Intervention fidelity was reported in two studies.ConclusionsThese findings suggest developing an SDM intervention including a patient decision aid, healthcare professional training, and a consultation prompt could support patient PR decisions, and health-related outcomes. Using a complex intervention development and evaluation research framework will likely lead to more robust research, and a greater understanding of service needs when integrating the intervention within practice.PROSPERO registration numberCRD42020169897.
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