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

Dreesens, Dunja; Faber, Marjan J.; Bos, N.; Drenthen, Ton; Maas, Ingrid; Kersten, Sonja; Malanda, U.L.; Scheur, Sander van der; Post, Heleen; Knops, André

doi:10.1111/hex.12843

Cited by 22 publications

(18 citation statements)

References 27 publications

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“…by re-phrasing these recommendations to increase option awareness and/or to include patient preferences. Other possibilities are to structure the deliberation process and describe it more explicit in the guideline, and/or providing patient support tools [38]. These tools could be linked to a specific recommendation or to the guideline as a whole [5].…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2019

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BackgroundBecause 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.MethodsSemi-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.ResultsSome 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.ConclusionsFor 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.

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Section: Discussionmentioning

confidence: 99%

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

et al. 2019

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“…Another lesson learned is that central investment in high‐quality and standardized decision aids, option grids, and quality standards as is now practiced in the Netherlands will continue to be of great importance. We recommend to also include preferred presentation formats of dashboards in those quality standards.…”

Section: Synthesismentioning

confidence: 99%

The use of PROMs and shared decision‐making in medical encounters with patients: An opportunity to deliver value‐based health care to patients

Damman

Jani

Jong

et al. 2019

Evaluation Clinical Practice

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Background The recent emphasis on value‐based health care (VBHC) is thought to provide new opportunities for shared decision‐making (SDM) in the Netherlands, especially when using patient‐reported outcome measures (PROMs) in routine medical encounters. It is still largely unclear about how PROMs could be linked to SDM and what we expect from clinicians in this respect. Aim To describe approaches and lessons learned in the fields of SDM and VBHC implementation that converge in using PROMs in medical encounters. Approach Based on input from three Dutch forerunner case examples and available evidence about SDM and VBHC, we describe barriers and facilitators regarding the use of PROMs and SDM in the medical encounter. Barriers and facilitators were structured according to a conversational model that included monitoring and managing, team talk, option talk, choice talk, and decision talk. Key lessons learned and recommendations were synthesized. Results The use of individual, N = 1 PROMs scores in the medical encounter has been largely achieved in the forerunner projects. Conversation on monitoring and managing is relatively well implemented, and option talk to some extent, unlike team talk, and decision talk. Aggregated PROMs information describing outcomes of treatment options seemed to be scarcely used. Experienced barriers largely corresponded to what is known from the literature, eg, perceived lack of time and lack of tools summarizing the options. Some concerns were identified about increasing health care consumption as a result of using PROMs and SDM in the medical encounter. Conclusion Successful implementation of SDM within VBHC initiatives may not be self‐evident, even though individual, N = 1 PROMs scores are being used in the medical encounter. Education and staff resources on meso and macro levels may facilitate the more time‐consuming SDM aspects. It seems fruitful to especially target team talk and choice talk in redesigning clinical pathways.

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“…An updated guideline was recently published. To facilitate implementation, it is recommended that patient decision aids relate closely to clinical guidelines [ 38 ]. Therefore, the patient decision aid should be regularly reviewed and updated as soon as a clinical guideline has been completed or adjusted, and formal relations with these clinical guidelines should be established.…”

Section: Discussionmentioning

confidence: 99%

Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development

Kremer

Jongen

Evers

et al. 2021

BMC Med Inform Decis Mak

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Background Since decision making about treatment with disease-modifying drugs (DMDs) for multiple sclerosis (MS) is preference sensitive, shared decision making between patient and healthcare professional should take place. Patient decision aids could support this shared decision making process by providing information about the disease and the treatment options, to elicit the patient’s preference and to support patients and healthcare professionals in discussing these preferences and matching them with a treatment. Therefore, a prototype of a patient decision aid for MS patients in the Netherlands—based on the principles of multi-criteria decision analysis (MCDA) —was developed, following the recommendations of the International Patient Decision Aid Standards. MCDA was chosen as it might reduce cognitive burden of considering treatment options and matching patient preferences with the treatment options. Results After determining the scope to include DMDs labelled for relapsing-remitting MS and clinically isolated syndrome, users’ informational needs were assessed using focus groups (N = 19 patients) and best-worst scaling surveys with patients (N = 185), neurologists and nurses (N = 60) to determine which information about DMDs should be included in the patient decision aid. Next, an online format and computer-based delivery of the patient decision aid was chosen to enable embedding of MCDA. A literature review was conducting to collect evidence on the effectiveness and burden of use of the DMDs. A prototype was developed next, and alpha testing to evaluate its comprehensibility and usability with in total thirteen patients and four healthcare professionals identified several issues regarding content and framing, methods for weighting importance of criteria in the MCDA structure, and the presentation of the conclusions of the patient decision aid ranking the treatment options according to the patient’s preferences. Adaptations were made accordingly, but verification of the rankings provided, validation of the patient decision aid, evaluation of the feasibility of implementation and assessing its value for supporting shared decision making should be addressed in further development of the patient decision aid. Conclusion This paper aimed to provide more transparency regarding the developmental process of an MCDA-based patient decision aid for treatment decisions for MS and the challenges faced during this process. Issues identified in the prototype were resolved as much as possible, though some issues remain. Further development is needed to overcome these issues before beta pilot testing with patients and healthcare professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, healthcare professionals and the quality of care.

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

Cited by 22 publications

References 27 publications

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

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

The use of PROMs and shared decision‐making in medical encounters with patients: An opportunity to deliver value‐based health care to patients

Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development

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