Top research priorities for preterm birth: Results of a prioritisation partnership between people affected by preterm birth and healthcare professionals (2019)

Type of publication:
Journal article

Author(s):
Oliver S.; Uhm S.; Duley L.; Crowe S.; David A.L.; James C.P.; Chivers Z.; Gyte G.; Gale C.; Turner M.; Chambers B.; Dowling I.; McNeill J.; Alderdice F.; Shennan A.; *Deshpande S.

Citation:
BMC Pregnancy and Childbirth; Dec 2019; vol. 19 (no. 1) 528

Abstract:
Background: We report a process to identify and prioritise research questions in preterm birth that are most important to people affected by preterm birth and healthcare practitioners in the United Kingdom and Republic of Ireland. Method(s): Using consensus development methods established by the James Lind Alliance, unanswered research questions were identified using an online survey, a paper survey distributed in NHS preterm birth clinics and neonatal units, and through searching published systematic reviews and guidelines. Prioritisation of these questions was by online voting, with paper copies at the same NHS clinics and units, followed by a decision-making workshop of people affected by preterm birth and healthcare professionals. Result(s): Overall 26 organisations participated. Three hundred and eighty six people responded to the survey, and 636 systematic reviews and 12 clinical guidelines were inspected for research recommendations. From this, a list of 122 uncertainties about the effects of treatment was collated: 70 from the survey, 28 from systematic reviews, and 24 from guidelines. After removing 18 duplicates, the 104 remaining questions went to a public online vote on the top 10. Five hundred and seven people voted; 231 (45%) people affected by preterm birth, 216 (43%) health professionals, and 55 (11%) affected by preterm birth who were also a health professional. Although the top priority was the same for all types of voter, there was variation in how other questions were ranked. Following review by the Steering Group, the top 30 questions were then taken to the prioritisation workshop. A list of top 15 questions was agreed, but with some clear differences in priorities between people affected by preterm birth and healthcare professionals. Conclusion(s): These research questions prioritised by a partnership process between service users and healthcare professionals should inform the decisions of those who plan to fund research. Priorities of people affected by preterm birth were sometimes different from those of healthcare professionals, and future priority setting partnerships should consider reporting these separately, as well as in total.

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Top 15 research priorities for preterm birth with clinicians and service users’ involvement-outcomes from a james lind alliance priority setting partnership (2014)

Type of publication:
Conference abstract

Author(s):
Uhm S., Alderdice F., Chambers B., Gyte G., Gale C., Duley L., James C.P., David A.L., McNeill J., Turner M.A., Shennan A., *Deshpande S., Crowe S., Chivers Z., Brady I., Oliver S.

Citation:
Archives of Disease in Childhood: Fetal and Neonatal Edition, June 2014, vol./is. 99/(A158), 1359-2998 (June 2014)

Abstract:
Background Preterm birth is the single most important determinant of adverse infant outcomes in terms of survival, quality of life, psychosocial and emotional impact on the family, and health care costs. Research agenda in this area has been determined primarily by researchers, and the processes for priority setting in research have often lacked transparency. Objectives To identify 15 most important priorities for future research for practitioners and service users in the area of preterm birth. Methods A priority setting partnership was established by involving clinicians, adults who were born preterm, and parents and families with experience of preterm birth. Research uncertainties were gathered from surveys of service users and clinicians, and analyses of systematic reviews and clinical guidance, and then prioritised in a transparent process, using a methodology advocated by the James Lind Alliance. Results 593 uncertainties were submitted by 386 respondents and 52 were identified from literature reviews. After merging similar questions, a long list of 104 questions were distributed for voting. The 30 most popular items were then prioritised at a workshop. The top 15 research priorities included prevention of preterm birth, management of neonatal infection, necrotising enterocolitis, pain and lung damage, care package at discharge, feeding strategies, pre-eclampsia, emotional and practical support, attachment and bonding, premature rupture of membranes and best time for cord clamping. Conclusions These top research priorities in preterm birth provide guidance for researchers and funding bodies to ensure that future research addresses questions that are important to both clinicians and service users.

Link to more details or full-text: http://fn.bmj.com/content/99/Suppl_1/A158.1.abstract