Search

Abstract Background The COVID-19 pandemic caused various disruptions to NHS maternity services in England. Changes were made to antenatal and postnatal care and the way that information was shared with maternity service users during these times. Fewer face-to-face appointments, increased virtual appointments and changes in guidance about the suitability of the COVID-19 vaccine without appropriate information sharing and evidence caused concern. Methods This study took a blended inductive-deductive approach to secondary data analysis using a population subset of 16 from a wider study that sought to understand the impact of COVID-19 on maternity services in England. Participants of this study were aged 28–44 and gave birth using NHS maternity services in England. The data were collected and coded using Rapid Analysis Procedure sheets, which generated key themes, which are used here to structure the results. Results Four main themes were generated from the analysis: 1) service restrictions to antenatal and postnatal appointments 2) access to information and changes to antenatal and postnatal care 3) inconsistencies in the implementation of government and NHS policy and 4) limited information about COVID-19 vaccine provided by NHS trusts and hesitancy in vaccine acceptance. Conclusion Participants experienced poor communication that affected their understanding of maternity service changes and there was limited general and maternal health information provided. Vaccine information was also inadequate, and participants expressed a desire for clearer guidance. The UK Government, Royal College of Obstetricians and Gynaecologists, and NHS must collaborate with maternity service users to ensure that there are evidence-based guidelines and policies that can be understood and standardised across all NHS maternity trusts.

IntroductionVariation in stage at diagnosis of childhood cancers (CC) may explain differences in survival rates observed across geographical regions. The BENCHISTA project aims to understand these differences and to encourage the application of the Toronto Staging Guidelines (TG) by Population-Based Cancer Registries (PBCRs) to the most common solid paediatric cancers.MethodsPBCRs within and outside Europe were invited to participate and identify all cases of Neuroblastoma, Wilms Tumour, Medulloblastoma, Ewing Sarcoma, Rhabdomyosarcoma and Osteosarcoma diagnosed in a consecutive three-year period (2014-2017) and apply TG at diagnosis. Other non-stage prognostic factors, treatment, progression/recurrence, and cause of death information were collected as optional variables. A minimum of three-year follow-up was required. To standardise TG application by PBCRs, on-line workshops led by six tumour-specific clinical experts were held. To understand the role of data availability and quality, a survey focused on data collection/sharing processes and a quality assurance exercise were generated. To support data harmonization and query resolution a dedicated email and a question-and-answers bank were created.Results67 PBCRs from 28 countries participated and provided a maximally de-personalized, patient-level dataset. For 26 PBCRs, data format and ethical approval obtained by the two sponsoring institutions (UCL and INT) was sufficient for data sharing. 41 participating PBCRs required a Data Transfer Agreement (DTA) to comply with data protection regulations. Due to heterogeneity found in legal aspects, 18 months were spent on finalizing the DTA. The data collection survey was answered by 68 respondents from 63 PBCRs; 44% of them confirmed the ability to re-consult a clinician in cases where stage ascertainment was difficult/uncertain. Of the total participating PBCRs, 75% completed the staging quality assurance exercise, with a median correct answer proportion of 92% [range: 70% (rhabdomyosarcoma) to 100% (Wilms tumour)].ConclusionDifferences in interpretation and processes required to harmonize general data protection regulations across countries were encountered causing delays in data transfer. Despite challenges, the BENCHISTA Project has established a large collaboration between PBCRs and clinicians to collect detailed and standardised TG at a population-level enhancing the understanding of the reasons for variation in overall survival rates for CC, stimulate research and improve national/regional child health plans.