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• W2165692555 abstract "In the UK, stillbirth is defined as intrauterine death of a fetus after 24 weeks of pregnancy or with a birth weight ≥ 500 g if the gestational age is unknown1. In 2013, there were 3286 stillbirths in the UK (4.2 per 1000 live births)2. A reduction in the number of stillbirths is highly desirable owing to the significant adverse medical, psychological, social and economic impacts associated with stillbirth3-6. The variation in stillbirth rates in high-income countries suggests that rates can be reduced in countries with high rates7. In comparison with pregnancy conditions resulting from a single etiology, prevention of stillbirth is challenging, as it may be the endpoint of different pregnancy complications – such as fetal growth restriction, congenital anomalies or infection – and the cause is unknown in approximately 15% of cases8, 9. Original research has an important role to play in the reduction of stillbirth, but compared to other pregnancy outcomes stillbirth remains under-researched; a MEDLINE keyword search (carried out on 4 June 2015) retrieved 2399 hits for stillbirth, 8247 for preterm birth and 12 527 for pre-eclampsia. Therefore, to address this gap in research, further studies on stillbirth are needed. Recently, efforts have been made to increase the involvement of patients and clinicians in identifying research priorities, to ensure that finite resources are allocated to research that is important to all stakeholders. In 2011, a systematic review found that only nine of 258 reports on research or service prioritization exercises included both patients' and clinicians' views10. Importantly, stakeholder involvement in decision-making significantly alters healthcare priorities, making them more patient centered11. The James Lind Alliance (JLA) was established in the UK in 2004 to encourage collaboration between patients, clinicians and researchers, to ensure that shared uncertainties are addressed by research. The JLA methodology is the most widely employed method of determining research priorities12. Priorities for stillbirth research have been ranked previously by 31 professionals, identified through the International Stillbirth Alliance and Global Alliance to Prevent Prematurity and Stillbirth7. The Child Health and Nutrition Research Initiative methodology, which includes a 15-step managed process to prioritize investments in health research at institutional, regional, national, international or global levels, was applied13. This process commences by considering the context and preferences for the process and culminates in the ranking of priorities by experts, based on prespecified criteria13. This methodology was applied to identify the top 10 priorities for stillbirth research in three areas: development and delivery, discovery science and epidemiological information and measurement. However, to date, there has been no involvement of bereaved families or frontline healthcare professionals in the prioritization of topics for stillbirth research, so to ensure that stillbirth research addresses topics important to clinicians and parents we invited parents, families and clinicians to submit research questions relating to stillbirth. Our objectives were to: (i) enable parents, families and clinicians to identify research priorities; (ii) agree a ‘top 10’ list of priorities by consensus; (iii) publicize the results; and (iv) promote the findings to researchers and funding bodies. The Stillbirth Priority Setting Partnership (PSP) was led by Tommy's (London, UK), with the Maternal and Fetal Health Research Centre, University of Manchester, as an academic partner. The JLA provided an independent chair for the PSP and the project was undertaken in accordance with JLA methodology14. An overview of the process is shown in Figure 1. A steering group was formed from representatives of relevant professional and parents' organizations (British Maternal and Fetal Medicine Society; British and Irish Paediatric Pathology Association; The Royal College of Midwives; Department of Health; Maternal and Fetal Health Research Centre, Manchester, UK; Sands (Stillbirth and Neonatal Death Charity, London, UK); Tommy's; Holly Martin Stillbirth Research Fund; and National Maternity Support Foundation – (Jake's Charity)). Members of the steering group approached other relevant organizations to act as partners in the PSP. Relevant organizations included those who represent individuals who have direct or indirect experience of stillbirth or those representing medical doctors, nurses and professionals allied to medicine with clinical experience of stillbirth. Partner organizations were asked to affiliate to the JLA to demonstrate their commitment to the aims and values of the PSP. Twenty-four organizations agreed to become partners. These included 10 professional and 14 parent organizations (British Association of Perinatal Medicine; MBRRACE – UK; Northern Ireland Maternal and Infant Loss (NIMI); Obstetric Anaesthetists Association; Royal College of General Practitioners; Royal College of Obstetricians and Gynaecologists; Royal College of Pathologists Speciality Advisory Committee; Royal College of Psychiatrists – Perinatal Section; Scottish Stillbirth Working Group; Welsh Initiative for Stillbirth Reduction; Babyloss Bounty; Campaign for Safer Births; Child Bereavement Charity; Child Death Helpline; Count the Kicks; Group B Strep Support; ICP Support (formerly OC Support); Lullaby Trust (formerly FSID); MAMA Academy; Mumsnet; Muslim Bereavement Support Scheme; National Childbirth Trust; Netmums; and Towards Tomorrow Together). The steering group developed a survey to identify unanswered questions relating to stillbirth. This used an open question to identify up to 10 uncertainties relating to stillbirth from each respondent. Question development was an iterative process, involving piloting the questions with parents and professionals. When this process was complete, a number of closed questions were added to collect demographic information on respondents including: the respondents' role (parent, healthcare, charity worker, etc.), gender, age, ethnicity and whether their response was their own or was made on behalf of others. No identifiable information was collected routinely from respondents. Participants could provide their e-mail address to receive news updates. Participation in PSPs does not require ethical approval, but participants were asked for permission to use their responses for the UK Database of Uncertainties about the Effects of Treatments (UK-DUETS) and for publication. Participants had access to the questionnaire via the PSP website (www.stillbirthpsp.org.uk) for 2 months, between 12 May and 14 July 2014. The website was publicized by partner organizations through websites, print and social media. Research recommendations were also identified by searching all pregnancy-related guidelines from the National Institute for Health and Social Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of Obstetricians and Gynaecologists (RCOG). After the closing date for the survey, participants' responses were downloaded into Microsoft Excel (Microsoft Corp., Redmond, Washington, USA) and any identifiers removed. Inclusion and exclusion criteria for responses were determined a priori; responses that related to pregnancy loss before 24 weeks' gestation and personal stories were excluded. Owing to the paucity of stillbirth research, the steering group decided to include all research questions, not just those relating to treatment uncertainties. The responses were categorized initially by two steering-group members (A.E.P.H. and C.B.) according to an agreed structure, and disagreement was resolved by consensus. Responses were then distributed to pairs of steering-group members, each pair comprising one parent and one professional representative. The responses were reviewed to remove duplicates, and indicative questions were formulated by consensus. Literature searches were carried out in MEDLINE, EMBASE, CINAHL, PsycInfo (when relevant) and The Cochrane Library to determine whether the question remained unanswered. The literature was reviewed by two investigators (A.E.P.H. and M.K.W.); a question was deemed to be answered if there was a definitive answer given by a systematic review or similar study design. Where appropriate, the questions were then formatted into PICO format (population, intervention, comparator, outcome). The steering group agreed criteria for prioritizing the remaining unanswered questions. A greater weighting was given to questions suggested by more than one group of respondents (e.g. parents, midwives or obstetricians) or from a respected multidisciplinary group (e.g. Clinical Study Group), followed by questions suggested by more than one individual (ranked by number of individuals). Finally, suggested questions that agreed with guideline recommendations were prioritized. This approach yielded a total of 48 questions that were carried forward into the second web-based survey. This prioritization survey asked participants to select (up to) the 10 most important research questions from the list. To prevent selection bias, the order of responses was randomized when a participant opened the web page. Participants could re-enter the page to change their decisions until the closing date for access to the survey. The prioritization survey was publicized by partner organizations in the same manner as the initial survey. The survey was accessible from 17 December 2014 to 27 January 2015. Respondents were asked to give only their role (e.g. parent, midwife or obstetrician). The top 25 questions were taken forward to a face-to-face workshop facilitated by three independent JLA advisers in February 2015. The workshop involved members of the steering group and representatives from partner organizations. There were 14 professional representatives including obstetricians, perinatal pathologists, neonatologists and midwives, and 11 parents' representatives including bereaved parents, charity workers and medical advisers to charities. The workshop ranked the 25 priorities through a series of discussions in groups comprising a mix of parents and professional members. They were unable to agree on a top-10 list of research priorities so it was decided to have 11. A group decision was made not to rank the final list of 11 priorities in order. Responses to the initial survey published via the PSP website were received from 574 respondents, who contributed 1275 potential research questions (Figure 1). The demographic characteristics of respondents are shown in Table 1. Overall, 32% of respondents were parents and 50% were professionals; professionals came from a variety of backgrounds, predominantly midwives (22.8% of respondents) and obstetricians (9.9% of respondents). Sixteen questions were identified through searches of relevant NICE, SIGN and RCOG guidelines (Table 2). Of the responses received, 50 were excluded as they were automated responses or out of scope (e.g. addressed miscarriage or neonatal death rather than stillbirth), and a further 864 questions were removed as they were duplicates. Therefore, literature searches were carried out for 361 proposed questions (345 questions from survey respondents and 16 from guidelines). Of these questions, 61 were found to have been answered (relevant references for the answered questions are shown in Table S1). The workshop participants thought that providing a final ranking from 1–11 would be artificial owing to the varied nature of the questions, which cover biomedical themes, such as prevention of stillbirth by application of current tests, development of novel investigations and understanding the causes of ‘unexplained’ stillbirth, as well as bereavement care, maternity care in subsequent pregnancies and the role of mothers in responding to symptoms and signs relating to stillbirth. This article represents the final academic summary of the priority-setting process; other outputs included uploading all unanswered research questions to UK-DUETS, presenting the results at professional meetings and providing a lay summary distributed to stakeholders and partners (www.stillbirthpsp.org.uk/Stillbirth_PSP_summary.pdf). The results of the stillbirth PSP reflect the varied roles of participants. The involvement of parents in the priority-setting process confirmed the importance of some research questions identified by professionals alone, especially those concerned with improving outcome, such as the role of markers of placental function in identifying high-risk pregnancies, the optimal management of reduced fetal movements and antenatal care interventions to prevent stillbirth7. However, the top 11 priorities also included topics that may be perceived as more ‘patient-centered’ or related to health-service delivery, such as empowering women to raise concerns with healthcare professionals, addressing care in subsequent pregnancies, optimizing bereavement care and the role of mothers in responding to symptoms and signs relating to impending stillbirth. The inclusion of questions regarding the content and delivery of clinical care confirms the findings from other priority-setting processes and demonstrates the importance of including those affected by the condition in research-prioritization exercises11. Some of the research priorities identified by the stillbirth PSP corresponded with findings of the only other pregnancy-related PSP, concerning preterm birth15. Both PSPs included questions regarding the evaluation of antenatal care and which interventions are effective in predicting and preventing preterm birth or stillbirth. As some of the underlying etiologies overlap16, 17, it is possible that research to address primarily an unanswered question for one topic may address aspects of the other as a secondary consequence. Future PSPs relating to pregnancy complications (a miscarriage PSP is already underway) should consider any connections between different pregnancy complications and outcomes to ensure that effort is not duplicated and that due consideration is given to elevating the priority of unanswered questions that are identified independently by multiple PSPs, e.g. the role of specialist antenatal care. The positive response to the PSPs in preterm birth and stillbirth is encouraging, so consideration should be given to conducting PSPs for other pregnancy-related conditions, as in other fields (most notably dermatology) related PSPs have produced a growing body of information regarding research priorities for both common and rare conditions18-21. This research-prioritization process is strengthened by the participation of respondents from various roles, ages and ethnic groups. The involvement of such a diverse mix of parents and lay stakeholders is viewed as philosophically correct, and gives the resultant priorities legitimacy22. However, there are limitations to the PSP approach that should be considered. First, the process is, by its nature, selective; parents and professionals answering the questionnaire may not be fully representative. We cannot determine the response rate to the questionnaire as we do not know the number of potential respondents reached online. The questionnaire was internet based, although paper versions were available if required. The website was in English, which again may have restricted access to respondents who were not able to read English. Consequently, this approach may have excluded potential respondents from socially disadvantaged or minority ethnic groups. To address this issue a purposive sampling method would be required involving specialist parent-led organizations or focus groups to discuss the interim priorities in minority groups. Second, the selection of unanswered research questions based in part on the frequency of responses may result in research questions being rated as a low priority, if they addressed challenging issues or social taboos such as domestic or partner violence. However, all the unanswered research questions were uploaded onto UK-DUETS, thus consideration should be given to addressing these unanswered questions as well. Finally, these priorities were derived from surveys carried out in the UK, although strategies for patient and public involvement in research priorities have been developed in several settings23, 24. It is important that relevant priorities are addressed in other high-income settings and in low- and middle-income countries where the burden of stillbirth is greater, and causes and consequences of perinatal death may differ. As a consequence of involving parents and healthcare professionals in the priority setting, some of the unanswered questions proposed here are very broad and cannot be addressed by a single research study. This criticism of patient involvement in priority setting has been noted previously25. Here, it was in part owing to the decision of the steering group to retain the respondents' questions as much as possible and to include all research questions, not just those pertaining to treatment uncertainties. We envisage that these broad questions will be used as a starting point to be narrowed into research questions by investigators. Ideally, this development of research questions should continue to involve parents and health professionals. Nevertheless, the breadth of topics covered by the top 11 unanswered questions is testament to the clear need for research, not only into the prevention of stillbirth, but also into follow-up care after a stillbirth and in subsequent pregnancies. It is hoped that this approach will address the adverse psychological, social and economic effects of stillbirth. Such research requires a multidisciplinary approach, reflecting the multidisciplinary origin of the research priorities. We thank Lynn Hampson from The Cochrane Pregnancy and Childbirth Group for searching the current Cochrane Database of Systematic Reviews for relevant evidence, Michelle Dutton, Colette King and Michelle Maden for performing the literature searches, Kimberley Farrant, Jennifer Hartley and Rashda Imran for searching guidelines and Dick Collard for website design and maintenance. The Stillbirth PSP was funded by Tommy's and the Holly Martin Stillbirth Research Fund. A.E.P.H is supported by a Clinician Scientist Fellowship from the National Institute for Health Research (NIHR), UK. This report presents independent research funded by the NIHR. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. None of the funding bodies had any influence on the content and scope of the paper. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article." @default.
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• W2165692555 title "Research priorities for stillbirth: process overview and results from <scp>UK</scp> Stillbirth Priority Setting Partnership" @default.
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