Explorative observational study of Dutch patient-clinician interactions: operationalisation of personal perspective elicitation as part of shared decision-making in real-life audio-recorded consultations.

OBJECTIVES: Patients' preferences, values and contexts are important elements of the shared decision-making (SDM) process. We captured those elements into the concept of 'personal perspective elicitation' (PPE), which reflects the need to elicit patients' preferences, values and contexts in patient-clinician conversations. We defined PPE as: 'the disclosure (either elicited by the clinician or spontaneously expressed by the patient) of information related to the patient's personal preferences, values and/or contexts potentially relevant to decision-making'. Our goal was to operationalise the concept of PPE through the evaluation of preferences, values and contexts and explore how PPE occurs in clinical encounters. DESIGN: Cross-sectional study: observational coding based on a novel coding scheme of audio-recorded outpatient clinical encounters where encounter patient decision aids were applied. SETTING: We audio-recorded patient-clinician interactions at three Dutch outpatient clinics. PPE was analysed using a novel observational coding scheme, distinguishing preferences, contexts and four Armstrong taxonomy value types (global, decisional, external and situational). We measured SDM using the Observer OPTION5. PARTICIPANTS: Twenty patients who suffered from psoriasis or ovarian cysts; four clinicians. RESULTS: We included 20 audio-recordings. The mean Observer OPTION5 score was 57.5 (SD:10.1). The audio-recordings gave a rich illustration of preferences, values and contexts that were discussed in the patient-clinician interactions. Examples of identified global values: appearance, beliefs, personality traits. Decisional values were related to the process of decision-making. External values related to asking advice from for example, the clinician or significant others. An identified situational value: a new job ahead. Contexts related to how the illness impacted the life (eg, sexuality, family, sports, work life) of patients. CONCLUSIONS: The operationalisation of PPE, an important aspect of SDM, explores which preferences, values and contexts were discussed during patient-clinician interactions where an ePDA was used. The coding scheme appeared feasible to apply but needs further refinement.

Bringing personal perspective elicitation to the heart of shared decision-making: A scoping review.

OBJECTIVES: Proponents of shared decision-making (SDM) advocate the elicitation of the patient's perspective. This scoping review explores if, and to what extent, the personal perspectives of patients are elicited during a clinical encounter, as part of a SDM process. We define personal perspective elicitation (PPE) as: the disclosure (either elicited by the clinician or spontaneously expressed by the patient) of information related to the patient's personal preferences, values and/or context. METHODS: A search was conducted in five literature databases from inception dates up to July 2020, to identify empirical studies about SDM (with/without SDM instrument). RESULTS: The search identified 4562 abstracts; 263 articles were read in full text, resulting in 99 included studies. Studies reported low levels of PPE. Integration of personal perspectives into the conversation or a future care plan was largely absent. The majority of the discussed content related to physical health, while social and psychological topics were mostly unaddressed. CONCLUSIONS: PPE occurs on a very low level in efforts to achieve SDM according to evaluation studies. PRACTICE IMPLICATIONS: PPE is advocated but rarely achieved in SDM evaluation studies. Causes should be identified, followed by designing interventions to improve this aspect of SDM.

Potential impact of encounter patient decision aids on the patient-clinician dialogue: a qualitative study on Dutch and American medical specialists' experiences.

OBJECTIVES: To examine the experiences among Dutch and American clinicians on the impact of using encounter patient decision aids (ePDAs) on their clinical practice, and subsequently to formulate recommendations for sustained ePDA use in clinical practice. DESIGN: Qualitative study using semi-structured interviews with clinicians who used 11 different ePDAs (applicable to their specialty) for 3 months after a short training. The verbatim transcribed interviews were coded with thematic analysis by six researchers via ATLAS.ti. SETTING: Nine hospitals in the Netherlands and two hospitals in the USA. PARTICIPANTS: Twenty-five clinicians were interviewed: 16 Dutch medical specialists from four different disciplines (gynaecologists, ear-nose-throat specialists, neurologists and orthopaedic surgeon), 5 American gynaecologists and 4 American gynaecology medical trainees. RESULTS: The interviews showed that the ePDA potentially impacted the patient-clinician dialogue in several ways. We identified six themes that illustrate this: that is, (1) communication style, for example, structuring the conversation; (2) the patient's role, for example, encouraging patients to ask more questions; (3) the clinician's role, for example, prompting clinicians to discuss more information; (4) workflow, for example, familiarity with the ePDA's content helped to integrate it into practice; (5) shared decision-making (SDM), for example, mixed experiences whether the ePDA contributed to SDM; and (6) content of the ePDA. Recommendations to possibly improve ePDA use based on the clinician's experiences: (1) add pictorial health information to the ePDA instead of text only and (2) instruct clinicians how to use the ePDA in a flexible (depending on their discipline and setting) and personalised way adapting the ePDA to the patients' needs (e.g., mark off irrelevant options). CONCLUSIONS: ePDAs contributed to the patient-clinician dialogue in several ways according to medical specialists. A flexible and personalised approach appeared appropriate to integrate the use of ePDAs into the clinician's workflow, and customise their use to individual patients' needs.

Lost in definitions: Reducing duplication and clarifying definitions of knowledge and decision support tools. A RAND-modified Delphi consensus study.

BACKGROUND: A review of tools for knowledge translation and decision support yielded an abundance of tool types and confusion over the definitions of these knowledge tools. The aim of this study was to limit the number of tool types, reach consensus on their definitions and clarify their intended use. METHODS: We used the RAND-modified Delphi approach to select a core set of knowledge tools and to reach agreement on the tools' definitions. The knowledge tool types were scored using a Likert scale in two Delphi rounds on importance; the provided definitions were also scored and commented on by the experts. RESULTS: Over 20 experts from parties involved with development of knowledge and decision support tools limited the number of tool types from 34 to 13. The Delphi-participants reached consensus on nine tools as being important for knowledge translation and supporting (shared) decision-making. Furthermore, they reached consensus on the definition of five of the 13 tools. CONCLUSIONS/DISCUSSION: A large group of experts, representatives of Dutch knowledge tool developers, managed to reach consensus on a core set of 13 knowledge tool types for the Netherlands. Implementing the use of this set and limiting the expansion with other tool types remains challenging.

The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians' critical reflections.

BACKGROUND: Because of practice variation and new developments in palliative pediatric care, the Dutch Association of Pediatrics decided to develop the clinical practice guideline (CPG) palliative care for children. With this guideline, the association also wanted to precipitate an attitude shift towards shared decision-making (SDM) and therefore integrated SDM in the CPG Palliative care for children. The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians' attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs. METHODS: Semi-structured face-to-face interviews. Pediatricians (15) were recruited through purposive sampling in three university-based pediatric centers in the Netherlands. The interviews were audio-recorded and transcribed verbatim, coded by at least two authors and analyzed with NVivo. RESULTS: Some pediatricians considered SDM a skill or attitude that cannot be addressed by clinical practice guidelines. According to others, however, clinical practice guidelines could enhance SDM. In case of the guideline Palliative care for children, the recommendations needed to focus more on how to practice SDM, and offer more detailed recommendations, preferring a recommendation stating multiple options. Most interviewed pediatricians felt that patient decisions aids were beneficial to patients, and could ensure that all topics relevant to the patient are covered, even topics the pediatrician might not consider him or herself, or deems less important. Regardless of the perceived benefit, some pediatricians preferred providing the information themselves instead of using a patient decision aid. CONCLUSIONS: For clinical practice guidelines to potentially enhance SDM, guideline developers should avoid blanket recommendations in the case of preference sensitive choices, and SDM should not be limited to recommendations on non-treatment decisions. Furthermore, preference sensitive recommendations are preferably linked with patient decision aids.

The Dutch chaos case: A scoping review of knowledge and decision support tools available to clinicians in the Netherlands.

BACKGROUND: To keep clinicians up-to-date with the latest evidence, clinical practice and patient preferences, more and more knowledge tools - aiming to synthesise knowledge and support (shared) decision-making - are being developed. Unfortunately, it seems that in the Netherlands, and possibly elsewhere, the amount of different knowledge tool types makes it difficult to see the forest through the trees. METHODS: A scoping review, exploring types of knowledge tools available to Dutch clinicians (and patients) and how these tools are described. The search terms were collected from thesauri and textbooks, and used to search the websites and documents of selected national tool developing organisations. RESULTS: The review yielded 126 tool types. We included 67 different tool types, such as guidelines, protocols, standards and clinical pathways. Half of those tool types were aimed at clinicians, 14 at patients and 18 at both. In general, descriptions of the tool types were hard to find or incomplete. CONCLUSIONS: There exists a myriad of knowledge tool types and their descriptions are mostly unclear. The information overload experienced by clinicians is not addressed effectively by developing numerous unclearly defined knowledge tools. We recommend limiting the number of tool types and making a greater effort in clearly defining them. This abundance of poorly defined tools does not seem to be restricted to the Netherlands.

A conceptual framework for patient-directed knowledge tools to support patient-centred care: Results from an evidence-informed consensus meeting.

OBJECTIVE: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance of these exists. The tools themselves and their purposes are not always clearly defined; creating challenges for developers and users (professionals, patients). The study's aim was to develop a conceptual framework of patient-directed knowledge tool types. METHODS: A face-to-face evidence-informed consensus meeting with 15 international experts. After the meeting, the framework went through two rounds of feedback before informal consensus was reached. RESULTS: A conceptual framework containing five patient-directed knowledge tool types was developed. The first part of the framework describes the tools' purposes and the second focuses on the tools' core elements. CONCLUSION: The framework provides clarity on which types of patient-directed tools exist, the purposes they serve, and which core elements they prototypically include. It is a working framework and will require further refinement as the area develops, alongside validation with a broader group of stakeholders. PRACTICE IMPLICATIONS: The framework assists developers and users to know which type a tool belongs, its purpose and core elements, helping them to develop and use the right tool for the right job.

Developing quality criteria for patient-directed knowledge tools related to clinical practice guidelines. A development and consensus study.

BACKGROUND: Patient-directed knowledge tools such as patient versions of guidelines and patient decision aids are increasingly developed to facilitate shared decision making. In this paper, we report how consensus was reached within the Netherlands on quality criteria for development, content and governance of these tools. METHOD: A 12-month development and consensus study. The consortium worked on four work packages: (a) reviewing existing criteria; (b) drafting the quality criteria; (c) safe-guarding the acceptability and feasibility of the draft criteria by participatory research in on-going tool development projects; and (d) gaining formal support from national stakeholders on the quality criteria. RESULTS: We reached consensus on a 8-step guidance; describing minimal quality criteria for (a) the team composition; (b) setting the scope; (c) identifying needs; (d) the content and format; (e) testing the draft; (f) finalizing and approval; (g) dissemination and application, and (h) ownership and revision. The participants of the on-going tool development projects were positive about the quality criteria in general, but divided as to the degree of detail. Whereas some expressed a clear desire for procedural standards, others felt that it would be sufficient to provide only general directions. Despite the different views as to the degree of detail, consensus was reached in three stakeholder meetings. DISCUSSION: We successfully collaborated with all stakeholders and achieved formal support from national stakeholders on a set of minimum criteria for the development process, content and governance of patient-directed knowledge tools.

Integrating evidence on patient preferences in healthcare policy decisions: protocol of the patient-VIP study.

BACKGROUND: Despite a strong movement towards active patient involvement in healthcare policy decisions, systematic and explicit consideration of evidence of this research on patient preferences seems limited. Furthermore, little is known about the opinions of several stakeholders towards consideration of research evidence on patient preferences in healthcare policy decisions. This paper describes the protocol for an explorative study on the integration of research on patient preferences in healthcare policy decisions. The study questions: to what extent research evidence on patient preferences is considered in current procedures for healthcare policy decisions; opinions of stakeholders regarding the integration of this type of evidence in healthcare policy decisions; and what could be a decision framework for the integration of such research evidence in healthcare policy decisions. METHODS/DESIGN: The study is divided in three sub-studies, predominantly using qualitative methods. The first sub-study is a scoping review in five European countries to investigate whether and how results of research on patient preferences are considered in current procedures for coverage decisions and clinical practice guideline development. The second sub-study is a qualitative study to explore the opinions of stakeholders with regard to the possibilities for integrating evidence on patient preferences in the process of healthcare decision-making in the Netherlands. The third sub-study is the development of a decision framework for research on patient preferences. The framework will consist of: a process description regarding the place of evidence on patient preferences in the decision-making process; and a taxonomy describing different terminologies and conceptualisations of 'preferences' and an overview of existing methodologies for investigating preferences. The concept framework will be presented to and discussed with experts. DISCUSSION: This study will create awareness regarding the existence and potential value of research evidence on patient preferences for healthcare policy decision-making and provides insight in the methods for investigating patient preferences and the barriers and facilitators for integration of such research in healthcare policy decisions. Results of the study will be useful for researchers, clinical practice guideline developers, healthcare policy makers, and patient representatives.

[Advice on guidelines: planning for guideline development in the Netherlands]. / Regie over richtlijnen: plannen voor richtlijnontwikkeling in Nederland.

There is a lack of shared responsibility and national steering in guideline development. The 'Regieraad' (advisory board on guideline development, established by the Dutch Health Secretary) hopes to facilitate the coordination of guideline development. Therefore, the board developed a shortlist of the 100 most important diseases and 25 important care processes, based on several accepted criteria. An inventory of already available guidelines and other instruments for quality improvement was also made. The board thinks that guidelines should become more uniform to improve accessibility and usefulness for daily practice. The board encourages the availability of guidelines for the most important topics. With the information available a long-term policy for guideline development and maintenance can be determined.