Setting a core outcome set for preterm birth – lessons from the James Lind Alliance Priority Setting Partnership

Uhm, Seilin S (2013) Setting a core outcome set for preterm birth – lessons from the James Lind Alliance Priority Setting Partnership. The COMET III meeting : Core Outcome Measures in Effectiveness Trials, University of Liverpool, Liverpool, United Kingdom. 20 - 21 Jun 2013.

Abstract

Background:
This study will address what we have learnt from a priority setting partnership to establish a core outcome set for preterm birth. Preterm birth is a major determinant of neonatal mortality and morbidity and has long-term adverse consequences for health. We set up the Preterm Birth Priority Setting Partnership (PSP) to identify and prioritise research questions about preterm birth that were important to clinicians and service users, who deals with the consequences of preterm birth at daily basis.

Methods:
A James Lind Alliance method, which was based on the nominal group technique, has been applied to identify research gaps. Invitations to the partnership were sent to 44 clinical and service users’ organisations across UK and Ireland from May 2011. While we invited all representatives for the introductory and final workshops, volunteers for a Steering Group (SG) were invited to more frequent meetings and make core decisions.

Results: 27 organisations became partners while 10 representatives from them signed to become SG members. They have broadened the scope of the study from ‘interventions at birth’ to ‘prevention, treatments, and post-natal service delivery’. This collective decision was made because:
a) there were large area of uncertainties for preterm birth,
b) consequences of preterm birth is a lifetime issue to service users
As a result, SG had 9 meetings (instead of 3 originally planned) were held at every 2-3month.

Conclusion: Preterm birth is highly technical research, which involve highly emotive issues. While preterm birth is a broad topic, it could be broadened for deciding a core outcome set as we will have to consider it at a global level. Therefore, getting collective decisions might be a challenging task especially stakeholders with different interests work together. It is important to have a neutral but experienced facilitator; balanced number of stakeholders from each area; and flexible time frame.

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Contributors

Author: Seilin S Uhm

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