Evidence map›Paper›PMID 40583250›Full record

SynthesisHaemophilia : the official journal of the World Federation of Hemophilia2025

Developing a Two-Sided Decision Box to Facilitate Shared Decision-Making for Switching From Conventional to Pharmacokinetic-Tailored Prophylaxis in Haemophilia.

Arun Keepanasseril, Athena Mancini, Megan S Lowe, Noella Noronha, Alfonso Iorio

Abstract readSystematic Review
In one paragraph

Synthesis in Haemophilia : the official journal of the World Federation of Hemophilia, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed, 1 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

1 citing paper in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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

5 authors.

Arun KeepanasserilHealth Information Research Unit, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada.ORCID https://orcid.org/0000-0003-0733-9616
Athena ManciniHealth Information Research Unit, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada.ORCID https://orcid.org/0009-0002-5944-7483
Megan S LoweHealth Information Research Unit, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada.
Noella NoronhaHealth Information Research Unit, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada.
Alfonso IorioHealth Information Research Unit, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada.ORCID https://orcid.org/0000-0002-3331-8766

Funding

Bayer Inc.Hemalytic Inc.
6 · The paper itself

Abstract

introductionDecision-making in haemophilia is challenging due to the small evidence base, disease heterogeneity, and inter-patient variability. Shared decision-making (SDM) supports patient-clinician decisions.

aimCreation of a two-sided decision box facilitating SDM for haemophilia patients switching from conventional (weight-based) to pharmacokinetic driven individualized prophylaxis.

methodsWe developed an SDM tool as suggested by Giguere et al. A stakeholder discussion with haemophilia treaters and patients identified goals, burden, values and preferences. Benefits and harms of key questions were described with a common metric and base. A systematic review identified relevant evidence. PubMed, Medline, Embase, CINAHL, Cochrane Reviews and Cochrane Trials were searched from inception to June 2022. Original articles reporting switches from conventional to individualized prophylaxis within the same product class were included. Evidence from the review and discussion guided the design of the decision box. Feedback informed multiple iterations before the final version.

resultsA total of 569 titles and abstracts were screened, yielding 88 full texts. Eight studies met inclusion criteria: six reported on bleeding rates, four on dosing interval, three on factor consumption, three on quality of life, two on adherence, and two on costs. One study recommended SDM for tailored prophylaxis. Discussions unanimously suggested decision aids to facilitate the choice to switch to tailored prophylaxis. Clinicians highlighted the need for evidence on treatment individualization, while patients valued viewing relevant examples.

conclusionCreating decision tools for haemophilia is challenging due to low quantity and quality of evidence. Our decision box is ready for use with careful application of clinical judgement.

Indexed as

Decision Making, SharedHemophilia AHumansdecision makingdecision support techniqueshaemophilia Ahaemophilia Bpatient preferenceshared

Identifiers

PMID40583250
PMCPMC12462604

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

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.