Involving service users and clinicians to identify research uncertainties of preterm birth: the James Lind Alliance Priority Setting Partnership

Poster
2013 Québec City
Uhm S1, Chivers Z2, Crowe S3, David AL4, Dowling I5, Duley L6, Gale C7, Gyte G8, James CP4, McNeill J9, Turner MA10, Shennan A11, Oliver S12
1Social Science Resaerch Unit, Institute of Education, University of London, UK
2Bliss- the premature and special care baby charity, London, England
3James Lind Alliance, Oxford, England
4UCL Institute for Women’s Health, London, England
5Premature Babies, Dublin, Ireland
6Nottingham Clinical Trials Unit, University of Nottingham, Nottingham, England
7Academic Neonatal Medicine, Imperial College London, London, England
8National Childbirth Trust (NCT), London, England
9School of Nursing & Midwifery, Belfast, Northern Ireland
10Liverpool Women’s NHS Foundation Trust, Liverpool, England
11Kings College London, London, England
12Social Science Research Unit, Institute of Education, University of London, London, England
Background/

Objectives:

Preterm infants have immature internal organs and often need help with breathing, feeding, and other life support. Those who survive may suffer ill health or disability in childhood, which could potentially continue to adulthood. Even modest improvement for these infants and their families would be important. We aimed involving service users and clinicians to identify and prioritise uncertainties that are of greatest importance to them.

Methods:

This research adapted a mixed-method approach developed by the James Lind Alliance to establish Priority Setting Partnerships. We recruited 44 clinical and service users’ organisations across UK and Ireland from April 2011 and formed a Steering Group. Online surveys were conducted from March to February 2013, with paper-based survey at UK hospitals (December 2012).

Results:

1103 participants started the survey, while 371 of them (service users: 57%, clinicians: 30% and both 12%) suggested 654 research uncertainties. We received feedback from clinicians of various specialities (neonatologist: 28%, nurse: 25%. obstetrician: 18%, midwife: 12% and others 10%). Most service user respondents were white British and middle class. Service users asked about aetiologies, interventions and outcomes for pre-pregnancy (12), antenatal (42), perinatal (18), postnatal (58) and other (20), revealing interests in a broad range of issues surrounding preterm birth. Priorities of the identified uncertainties will be set by consensus development meetings and voting.

Conclusions:

Preterm birth is a highly technical and emotive topic. This study has shown service users’ and clinicians’ willingness to participate in furthering the research agenda and their desire for greater understanding and knowledge. Responses ranged from pre-pregnancy education to childhood interventions, highlighting the importance of continuity and duration of care for preterm infants. Finding ways of providing emotional and practical support to mothers and families was also frequently expressed. Furthermore, this study also showed need to engage service users from ethnic minorities and disadvantaged backgrounds with setting research agendas.