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Parents, Patients and Health Professionals Report Different Outcomes of Neonatal Care as important: a Systematic Review of Qualitative Research

Presented at the Neonatal Society 2017 Spring Meeting.

Webbe J1, Brunton G2, Ali S1, Longford N1, Wann L3, Modi N1, Gale C1

1 Section of Neonatal Medicine, Imperial College London, Chelsea and Westminster campus, London, UK
2 UCL Institute of Education, London, UK
3 West Middlesex University Hospital, Middlesex, London, UK

Background: Clinical trials have a greater potential to improve care if they measure outcomes that are meaningful and important. Research in other fields has shown that outcomes identified by patients differ from those identified by researchers or clinicians (1). Patient and parent input in outcome selection fosters public involvement in setting the research agenda (2). We aimed to review systematically published qualitative research to determine whether the outcomes of neonatal care that are important to the major stakeholder groups (patients, parents and health professionals) differ between groups. This is part of wider work to identify a neonatal core outcome set.

Methods: The review was pre-registered on PROSPERO (CRD42016037874). The following databases were searched: MEDLINE; CINAHL; EMBASE; PSYCINFO; ASSIA. Peer reviewed papers published in the last 20 years (1997- 2016) were considered. Where available, transcribed data were extracted verbatim. Narrative text describing stakeholders’ experiences, perspectives or opinions of the infant-related outcomes of neonatal care were analysed and grouped thematically according to the physiological system to which they related. If an outcome was discussed by a member of a stakeholder group this was assumed to reflect the importance of this outcome to them. Any new outcomes identified in the text were added to the framework of outcomes applied iteratively to all studies. Permutation testing was performed to test the null hypothesis that parents, patients and health professionals identified the same outcomes as important.

Results: Initial searches yielded 1130 papers. After screening, 62 papers containing the views of 4345 stakeholders (including 1952 parents and 368 former patients) were included in the final synthesis. We identified 186 discrete outcomes: 69 outcomes related to 9 physiological systems and 117 outcomes related to 10 other concepts. The most common physiological outcome domain was the gastrointestinal system. Thematic synthesis of nonphysiological outcomes identified outcomes relating to themes such as ‘normality’ and ‘suffering’. Permutation testing showed that the frequency with which outcomes were reported differed between parents, exneonatal patients and health professionals group (p=0.037). Ex-neonatal patients discussed outcomes relating to surgical processes and neurodevelopment more frequently while doctors and nurses both discussed outcomes relating to suffering more often than expected.

Conclusion: Parents, patients and clinicians report a wide range of important infant outcomes; these differed significantly between parents, ex-neonatal patients and health professionals. Many outcomes identified in this review are not commonly reported in neonatal clinical trials. I recommend the development of a core outcome set to ensure that clinical trial outcomes are aligned with the priorities of wider stakeholder groups.

Corresponding author: j.webbe@imperial.ac.uk

1. Sinha I et al. Outcomes in Clinical Trials of Inhaled Corticosteroids for Children with Asthma Are Narrowly Focussed on Short Term Disease Activity. PLoS ONE. 2009; 4(7): e6276
2. Goodacre A, Smith R. The rights of patients in research. BMJ. 1995;310:1277

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