Preterm Birth PSP Steering Group

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1 Preterm Birth PSP Steering Group Date: Tuesday 22 nd of January 2013 Time: 11am Teleconference Attendees and apologies: Please see page 4 (actual names of SG members have been removed to keep their privacy as this document will be publicly available). However we would like to thank all SG members for their time and contribution for this teleconference. List of agenda 1. Restructured categories for submitted uncertainties and 2. Review random sample of actual submissions We have reviewed re-structured categories together. Some minor errors were pointed out. We pointed out that some important topics of preterm birth were missing (for example, dietary or bed rest during antenatal period). However as the categories were based on service users and clinicians actual input, we decided not to add the missing topics, unless service users or clinicians specifically have raised this by postal survey (this information has not been added to the document yet). At the later stage, we will add research recommendations from systematic reviews.. While total number of 103 de-duplicated submissions was presented, SG members also have reviewed few samples of actual submissions (for example, submissions under feeding). There were possibilities to reduce this list by combining a few submissions under sub-categories. Seilin welcomed any further suggestions regarding categorisation. For example, whether questions on pre-pregnancy (e.g. why do we have preterm birth?) should be included was raised although it was not an interventional question as many service users asked the same question. We did not have enough time to further discuss on this particular topic during the tele- conference, but we can re-consider keeping this category. Please kindly advise Seilin, if you have any other concerns. 3. Scope of the PSP From treatment during delivery to a wider topic The initial proposal of the partnership was identifying and prioritising uncertainties about care in the delivery room. However, at our first SG meeting 1

2 in Nottingham 2011, we agreed that this was a too narrow scope and chose instead uncertainties arising before and after preterm births, and uncertainties about understanding, not only about effects of intervention. While we were putting our efforts to hear from clinicians and service users, we also aim to identify uncertainties from systematic reviews. The broad scope and the particular focus captured many more potential systematic reviews because a sensitive search was required to capture reviews addressing understanding as well as reviews addressing effects of intervention. As a result, we have captured 13,263 citations. Screening will leave approximately 830 reports to be retrieved in full and will be inspect for uncertainties. Sandy suggested the below numbers of systematic reviews after de-duplication and initial screening on title and abstract. Date Cochrane reviews other effectiveness reviews other systematic reviews Total Pre-2010 Post pre post (6 uploaded) (27 uploaded) To clarify the two main tasks in looking at the literature are: (i). (ii). To check uncertainties gathered from surveys and meetings for evidence that they uncertain (and if they are not they are excluded from the process). To inspect all relevant systematic reviews to identify research recommendations. The field of Pregnancy and Childbirth as a large amount of potentially relevant systematic reviews to inspect. At present this is screening workload is challenging for Sandy and Seilin, so following discussion within the team the following suggestions have been made. For agreement with the Steering Group: We will keep our current scope on the topics from pre-pregnancy issues to childhood issues. Therefore, we have expanded from the originally proposed scope, which was delivery room interventions. 2

3 We will identify and prioritise questions about interventions/treatment first as we have limited resources and time. Issues with health conditions (including aetiology/prognosis of certain health conditions) will not be our top priority. We will not discard our survey data for health conditions but will seek additional funding opportunities to develop them. Therefore, we will review only effectiveness reviews (incl Cochrane reviews) from the above table, which will be around 740. Excluding reviews published before 2010 was suggested. However, it was raised that some very important research recommendations have been published in the last 5-10 years so we will review pre 2010 reviews. We will only include systematic reviews in English language. We will check systematic reviews on the same topic and remove duplicates. Reading only structured reviews (such as Cochrane reviews) were suggested, but we will try to analyse all systematic reviews. 4. Prioritisation process: how to produce a long list? The SG members briefly discussed issues on a long list. This is the list of uncertainties that will be sent out to people to vote on. Sally mentioned that other PSPs there is a range of length of uncertainties to be voted on from Further discussion is needed on this stage. Some SG members pointed out potential difficulties from their previous experience: for example, is it realistic to expect parents to read and choose prioritise of 100 research questions, especially when they are pre-occupied with their babies? 5. Publication/promotion for voting stage? Seilin reported that documentation of socio-demographic details have improved when we had surveys at hospitals and clinics. She also mentioned that more people at hospitals and clinics left their contact details than on-line survey. Seilin proposed distributing voting papers at those places and asked for advice in amending ethics approval. SG members advised that decisions on amendments are usually made at a local R&D level, which should not take too long. It was advised to send an example of voting paper from other PSP to R&Ds to illustrate the process. 3

4 6. Date for another teleconference in May? We could not decide a date for the next teleconference in May (after a face-to-face meeting in March). The date will be decided through communication. Next Meeting We have scheduled a face-to-face meeting in March in London. Thank Zoe and Bliss for providing the venue. The meeting will be on Friday 8 March 2013 from 11am to 3pm at 9 Holyrood Street, London Bridge, London, SE1 2EL Finally, Once again, thank you for attending this teleconference. Seilin and Sandy also would like to thank Sally and Patricia at the James Lind Alliance for providing the facilities for the tele-conference. Attendees Title/Name Organisation Job title Representing /job nature Ms Bev Chambers Tavistock Clinic Master s student/a parent of preterm babies Ms Zoe Chivers Ms Sally Crowe Dr Anna David Prof Lelia Duley Bliss, the special care baby charity James Lind Alliance Monitoring and Implementation Group Maternal & Fetal Medicine UCL Institute for Women's Health & UCL Institute of Child Health Nottingham Clinical Trials Unit University of Nottingham Innovations Team Manager Chair Consultant/Professor Professor Service users Service users Facilitator Clinicians /clinicians Ms Gill Gyte Consumer Panel coordinator National Childbirth Trust Service users Dr Catherine Penny James Prof Sandy Oliver Maternal & Fetal Medicine UCL Institute for Women's Health & UCL Institute of Child Health Social Science Research Unit, Institute of Education, University of London Wellbeing of Women Clinical Research Fellow Professor Clinicians Dr Mark Turner Ms Seilin Uhm Liverpool Women's Hospital Liverpool Senior Women's Lecturer / Senior Clinicians Lecturer / Hospital Honorary Consultant in Honorary Consultant Hospital Neonatology in Neonatology Social Science Research Unit, Institute of Education, University of London Postgraduate /facilitator HCP 4

5 Apologies Ms Jenny McNeill (Maternity leave) Ms Deirdre Brady School of Nursing & Midwifery, Queen's University Belfast TinyLife - the premature baby charity for N.I. Lecturer in Midwifery Research Chief Executive Clinicians/service users Service users Dr Chris Gale Royal College of Paediatrics and Child Health Clinical Research Fellow Clinicians Ms Irene Brady Irish Premature Babies Representative Service users Prof Andrew Shennan Royal College of Obstetricians and Gynaecologists Professor HCPs 5

6 Plans Important dates for your diary: 8 March 2013: SG meeting at Bliss, London (11am to 3pm) mid-may (date-tbc on 22 Jan): teleconference 11 June 2013: Final workshop: at Institute of Education (?) (11am to 3pm) 2013h Feb Mar Apr May June Prioritisation Process Check already answered questions Voting (Mid-April to Mid May) Our meetings SG meeting in London (8 th ) SG tele-conference (date: TBC) Final workshop (11 th ) Aims/purpose of our meetings To agree a long list of data, To prepare a voting paper To agree the outcomes of prioritisation. To decide Top Ten To decide research questions External publications NIHR Programme SG meeting (26 th ) Deadline for Neonatal Society Infant Journal (publication) Neonatal Society meeting (27 th ) BMFMS Annual conf. RCOG World Congress (24-26) Neonatal Society (27-28) 6