Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals

Abstract

BackgroundWe 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.MethodsUsing 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.ResultsOverall 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.ConclusionsThese 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.

A patient–clinician James Lind Alliance partnership to identify research priorities for hyperemesis gravidarum

“…The miscarriage PSP had 1093 participants in round one, of which only 9.5% were healthcare professionals; the endometriosis PSP achieved 20% healthcare professional participation, of which 15% had experienced the condition themselves. 22 Likewise, as in this project, the cross over between healthcare professionals and patients was notable in other women’s health conditions, such as 11% in the preterm birth PSP 23 and 31% in the pessary use for prolapse PSP. 24 The high level of patient engagement was anticipated by the authors as the patient population for this condition has previously demonstrated a strong interest for taking part in research with hundreds or even thousands of responses on surveys in a matter of days.…”

Controversies in the prevention of spontaneous preterm birth in asymptomatic women: an evidence summary and expert opinion

“…This is in contrast to the established increased prevalence of GBS at the time of preterm delivery 57 . To our knowledge, however, the effect of treatment of GBS on risk of PTB has not been evaluated recently, although this did rank highly in a recent research prioritisation project 58 . An programme of GBS vaccine development is currently underway and the effect upon PTB risk will be an interesting end point 59 …”

“…The prediction and prevention of labour before term was voted as the top research priority in PTB in two large UK research priority-setting projects involving service users and healthcare professionals. 58,103 All 24 of the areas of uncertainty identified by members of the preterm clinical Box • Summary of research questions What effect will implementing known or suggested risk-reducing interventions for the prevention of preterm birth have on current population rates of preterm birth?…”

“…57 To our knowledge, however, the effect of treatment of GBS on risk of PTB has not been evaluated recently, although this did rank highly in a recent research prioritisation project. 58 An programme of GBS vaccine development is currently underway and the effect upon PTB risk will be an interesting end point. 59 We recommend that clinicians discuss the quality and testing capacity of their local laboratories to make informed decisions about whether to offer vaginal swabs in asymptomatic women at high risk of PTB.…”

Research priorities for pregnancy hypertension: a UK priority setting partnership with the James Lind Alliance

“…Since the establishment of the JLA in 2004, this methodology has been used to identify the top 10 research questions in areas such as asthma, 18 miscarriage 19 and hyperacusis. 20 Other JLAs have addressed research priorities in pregnancy complications such as preterm birth 21 and stillbirth 22 but these did not have a focus on hypertensive disorders of pregnancy. A Canadian PSP focused on hypertension, but pregnancy did not feature in their top 25 questions.…”