Evidence map›Paper›PMID 31811009›Full record

ArticleBMJ open2019

Role of patient preferences in clinical practice guidelines: a multiple methods study using guidelines from oncology as a case.

Fania R Gärtner, Johanneke E Portielje, Miranda Langendam, Desiree Hairwassers, Thomas Agoritsas, Brigitte Gijsen, Gerrit-Jan Liefers, Arwen H Pieterse, Anne M Stiggelbout

Abstract read
In one paragraph

Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
34citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

34 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
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  12. Cancer Patients' Experiences of Burden when Involved in Treatment Decision Making.Medical decision making : an international journal of the Society for Medical Decision Making · 2025
    Article
  13. Article
  14. Patient preferences and willingness to pay for transitional care in breast cancer: a discrete choice experiment.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025
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  19. Assessing patient information needs for new antidiabetic medications to inform shared decision-making: A best-worst scaling experiment in China.Health expectations : an international journal of public participation in health care and health policy · 2024
    Article
  20. Use of Persuasive Language in Communication of Risk during Prostate Cancer Treatment Consultations.Medical decision making : an international journal of the Society for Medical Decision Making · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Fania R GärtnerMedical Decision Making, Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands.
Johanneke E PortieljeClinical Oncology, Leiden University Medical Center, Leiden, Zuid-Holland, The Netherlands.
Miranda LangendamClinical Epidemiology, Biostatistics and Bioinformatics, Academic Medical Center, Amsterdam, North Holland, The Netherlands.
Desiree HairwassersBreast Cancer Association the Netherlands, Utrecht, The Netherlands.
Thomas AgoritsasDivision of General Internal Medicine and Division of Clinical Epidemiology, University Hospitals of Geneva, Geneva, Switzerland.ORCID 0000-0002-6182-9969
Brigitte GijsenNetherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands.
Gerrit-Jan LiefersSurgery, Leiden University Medical Center, Leiden, The Netherlands.
Arwen H PieterseMedical Decision Making, Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands.
Anne M StiggelboutMedical Decision Making, Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands a.m.stiggelbout@lumc.nl.ORCID 0000-0002-6293-4509

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveMany treatment decisions are preference-sensitive and call for shared decision-making, notably when benefits are limited or uncertain, and harms impact quality of life. We explored if clinical practice guidelines (CPGs) acknowledge preference-sensitive decisions in how they motivate and phrase their recommendations.

designWe performed a qualitative analysis of the content of CPGs and verified the results in semistructured interviews with CPG panel members.

settingDutch oncology CPGs issued in 2010 or later, concerning primary treatment with curative intent.

participants14 CPG panel members. MAIN OUTCOMES: For treatment recommendations from six CPG modules, two researchers extracted the following: strength of recommendation in terms of the Grading of Recommendations Assessment, Development and Evaluation and its consistency with the CPG text; completeness of presentation of benefits and harms; incorporation of patient preferences; statements on the panel's benefits-harm trade-off underlying recommendation; and advice on patient involvement in decision-making.

resultsWe identified 32 recommendations, 18 were acknowledged preference-sensitive decisions. Three of 14 strong recommendations should have been weak based on the module text. The reporting of benefits and harms, and their probabilities, was sufficiently complete and clear to inform the strength of the recommendation in one of the six modules only. Numerical probabilities were seldom presented. None of the modules presented information on patient preferences. CPG panel's preferences were not made explicit, but appeared to have impacted 15 of 32 recommendations. Advice to involve patients and their preferences in decision-making was given for 20 recommendations (14 weak). Interviewees confirmed these findings. Explanations for lack of information were, for example, that clinicians know the information and that CPGs must be short. Explanations for trade-offs made were cultural-historical preferences, compliance with daily care, presumed role of CPGs and lack of time.

conclusionsThe motivation and phrasing of CPG recommendations do not stimulate choice awareness and a neutral presentation of options, thus hindering shared decision-making.

Indexed as

Choice BehaviorMedical OncologyMotivationPatient ParticipationPractice Guidelines as TopicClinical ProtocolsDecision Making, SharedEvidence-Based MedicineHumansNetherlandsPatient PreferenceQualitative ResearchRisk Assessmentchoice awarenessevidence-based medicineGRADEpatient preferencesprotocols & guidelinesshared decision making

Identifiers

PMID31811009
PMCPMC6924854

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.