Delivered relative dose intensity in adolescent and young adult germ cell tumours in England: Assessment of data quality and consistency from clinical trials compared to national cancer registration data

Adolescent and young adults (AYA) with germ cell tumours (GCT) have poorer survival rates than children and many older adults with the same cancers. There are several likely contributing factors to this, including the treatment received. The prognostic benefit of intended dose intensity is well documented in GCT from trials comparing regimens. However, evidence specific to AYA is limited by poor recruitment of AYA to trials and dose delivery outside trials not being well examined. We examined the utility of cancer registration data and a clinical trials dataset to investigate the delivery of relative dose intensity (RDI) in routine National Health Service practice in England, compared to within international clinical trials. Linked data from the Cancer Outcomes and Services Dataset (COSD) and the Systemic Anti-Cancer Therapy (SACT) dataset, and data from four international clinical trials were analysed. Survival over time was described using Kaplan-Meier estimation; overall, by age category, International Germ-Cell Cancer Collaborative Group (IGCCCG) classification, stage, tumour subtype, primary site, ethnicity and deprivation. Cox regression models were used to determine the fully adjusted effect of RDI on mortality risk. The quality of both datasets was critically evaluated and clinically enhanced. RDI was found to be well maintained in all datasets with higher RDIs associated with improved survival outcomes. Real-world data demonstrated several strengths, including population coverage and inclusion of sociodemographic variables and comorbidity. It is limited in GCT however, by the poor completion of data items enabling risk classification of patients and a higher proportion of missing data

The Impact of Specialist Care on Teenage and Young Adult Patient-Reported Outcomes in England: A BRIGHTLIGHT Study

Purpose: In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13–24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care. Methods: We conducted a multicenter cohort study, recruiting 1114 TYA aged 13–24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Results: Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48–4.09) and 2.93 [1.27–4.59], respectively, p = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM −0.011 [95%CI −0.046 to 0.024] and SOME-TYA-PTC: −0.054 [−0.086 to −0.023]; p = 0.006). Conclusion: The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units

A match-day analysis of the movement profiles of substitutes from a professional soccer club before and after pitch-entry.

Whilst the movement demands of players completing a whole soccer match have been well-documented, comparable information relating to substitutes is sparse. Therefore, this study profiled the match-day physical activities performed by soccer substitutes, focusing separately on the pre and post pitch-entry periods. Seventeen English Championship soccer players were monitored using 10 Hz Micromechanical Electrical Systems (MEMS) devices during 13 matches in which they participated as substitutes (35 observations). Twenty physical variables were examined and data were organised by bouts of warm-up activity (pre pitch-entry), and five min epochs of match-play (post pitch-entry). Linear mixed modelling assessed the influence of time (i.e., 'bout' and 'epoch'), playing position, and match scoreline. Substitutes performed 3±1 rewarm-up bouts∙player-1∙match-1. Compared to the initial warm-up, each rewarm-up was shorter (-19.7 to -22.9 min) and elicited less distance (-606 to -741 m), whilst relative total distances were higher (+26 to +69 m∙min-1). Relative total (+13.4 m∙min-1) and high-speed (+0.4 m∙min-1) distances covered during rewarm-ups increased (p <0.001) with proximity to pitch-entry. Players covered more (+3.2 m; p = 0.047) high-speed distance per rewarm-up when the assessed team was losing compared with when winning at the time of pitch-entry. For 10 out of 20 variables measured after pitch-entry, values reduced from 0-5 min thereafter, and substitutes covered greater (p ˂0.05) total (+67 to +93 m) and high-speed (+14 to +33 m) distances during the first five min of match-play versus all subsequent epochs. Midfielders covered more distance (+41 m) per five min epoch than both attackers (p ˂0.001) and defenders (p = 0.016). Acknowledging the limitations of a solely movement data approach and the potential influence of other match-specific factors, such findings provide novel insights into the match-day demands faced by substitute soccer players. Future research opportunities exist to better understand the match-day practices of this population

Design and evaluation of an interactive quality dashboard for national clinical audit data: a realist evaluation

YesBackground: National audits aim to reduce variations in quality by stimulating quality improvement. However, varying provider engagement with audit data means that this is not being realised. Aim: The aim of the study was to develop and evaluate a quality dashboard (i.e. QualDash) to support clinical teams’ and managers’ use of national audit data. Design: The study was a realist evaluation and biography of artefacts study. Setting: The study involved five NHS acute trusts. Methods and results: In phase 1, we developed a theory of national audits through interviews. Data use was supported by data access, audit staff skilled to produce data visualisations, data timeliness and quality, and the importance of perceived metrics. Data were mainly used by clinical teams. Organisational-level staff questioned the legitimacy of national audits. In phase 2, QualDash was co-designed and the QualDash theory was developed. QualDash provides interactive customisable visualisations to enable the exploration of relationships between variables. Locating QualDash on site servers gave users control of data upload frequency. In phase 3, we developed an adoption strategy through focus groups. ‘Champions’, awareness-raising through e-bulletins and demonstrations, and quick reference tools were agreed. In phase 4, we tested the QualDash theory using a mixed-methods evaluation. Constraints on use were metric configurations that did not match users’ expectations, affecting champions’ willingness to promote QualDash, and limited computing resources. Easy customisability supported use. The greatest use was where data use was previously constrained. In these contexts, report preparation time was reduced and efforts to improve data quality were supported, although the interrupted time series analysis did not show improved data quality. Twenty-three questionnaires were returned, revealing positive perceptions of ease of use and usefulness. In phase 5, the feasibility of conducting a cluster randomised controlled trial of QualDash was assessed. Interviews were undertaken to understand how QualDash could be revised to support a region-wide Gold Command. Requirements included multiple real-time data sources and functionality to help to identify priorities. Conclusions: Audits seeking to widen engagement may find the following strategies beneficial: involving a range of professional groups in choosing metrics; real-time reporting; presenting ‘headline’ metrics important to organisational-level staff; using routinely collected clinical data to populate data fields; and dashboards that help staff to explore and report audit data. Those designing dashboards may find it beneficial to include the following: ‘at a glance’ visualisation of key metrics; visualisations configured in line with existing visualisations that teams use, with clear labelling; functionality that supports the creation of reports and presentations; the ability to explore relationships between variables and drill down to look at subgroups; and low requirements for computing resources. Organisations introducing a dashboard may find the following strategies beneficial: clinical champion to promote use; testing with real data by audit staff; establishing routines for integrating use into work practices; involving audit staff in adoption activities; and allowing customisation. Limitations: The COVID-19 pandemic stopped phase 4 data collection, limiting our ability to further test and refine the QualDash theory. Questionnaire results should be treated with caution because of the small, possibly biased, sample. Control sites for the interrupted time series analysis were not possible because of research and development delays. One intervention site did not submit data. Limited uptake meant that assessing the impact on more measures was not appropriate. Future work: The extent to which national audit dashboards are used and the strategies national audits use to encourage uptake, a realist review of the impact of dashboards, and rigorous evaluations of the impact of dashboards and the effectiveness of adoption strategies should be explored. Study registration: This study is registered as ISRCTN18289782.This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 12. See the NIHR Journals Library website for further project information

“It's like giving him a piece of me.”: Exploring UK and Israeli women's accounts of motherhood and feeding

Objective The present study explored how Israeli and UK mothers integrate feeding into their conceptualisations of mothering 2–6 months post-partum. Background The nature and importance of motherhood is subject to differential contextual, cultural, political and historical influences. We set out to compare experiences of motherhood and feeding between these two countries using a qualitative approach. Methods Forty one women (mean age 36.4 ± 2.7 years) from Israel and the UK, mostly married or in a committed relationship were interviewed about their experience of pregnancy, motherhood and feeding. Data were analysed thematically. Results The experience of motherhood in the early postnatal period was dominated, for all mothers, by the experience of breastfeeding and clustered around three representations of mothering, namely; 1) a devoted mother who ignores her own needs; 2) a mother who is available for her infant but acknowledges her needs as well; and 3) a struggling mother for whom motherhood is a burden. Such representations existed within both cultural groups and sometimes coexisted within the same mothers. UK women described more struggles within motherhood whereas a tendency towards idealising motherhood was observed for Israeli women. Conclusion There are similarities in the ways that UK and Israeli women experienced motherhood and feeding. Where family life is strongly emphasized, mothers reported extremes of idealism and burden and associated an “ideal” mother with a breastfeeding mother. Where motherhood is represented as just one of many roles women take up, they are more likely to represent a “good enough” approach to mothering. Understanding the experience of motherhood and feeding in different cultural settings is important to provide the context for postnatal care specifically where mothers are reluctant to share problems or difficulties encountered

Identifying social outcomes of importance for childhood cancer survivors: an e-Delphi study

Abstract Purpose Childhood cancer survivors (CCS) are at risk of deficits in their social outcomes, a key aspect of overall health and quality of life. Social outcomes of import are ill-defined leading to potential gaps in research and service provision. In this study, we undertook a preliminary consensus seeking exercise to support the development of a framework of the important social outcomes for CCS. Methods A modified e-Delphi study was conducted with four groups: CCS, health professionals, social workers and teachers. Round 1, developed from a literature review, included 34 questions rated for importance on a 7-point Likert scale. Rounds 2 and 3 presented items not achieving consensus, additionally proposed items and in round 3, a ranking question. Results Survey 1 was completed by 38 participants, 31 (82%) completed survey 2 and 28 (76%) completed survey 3. A total of 36 items were prioritised across 6 domains (education, independence, work, relationships, community, lifestyle), together forming the final list of social outcomes. Of these, 22 items met consensus for importance. Items rated most important were “having autonomy” and “avoiding social isolation”. Quantitative and qualitative results reflected that social outcomes for survivors and general public should be the same. Conclusion We have generated initial consensus on important social outcomes for CCS, highlighting the need for these to be matched to those of the general population. It suggests strategies are required to ensure autonomy and appropriate support for independence and relationships are provided through long-term aftercare and beyond. Further work is needed to validate and develop these findings into a framework to support appropriate social aftercare for CCS. Plain English Summary Following treatment for childhood cancer, survivors may face problems with their social health. These are the parts of life, besides physical and mental health, that help people to lead full, happy and satisfied lives. Social health is important as it affects all areas of our lives and includes many areas such as education, work and relationships. It is essential that we understand what the most important areas of social health are for childhood cancer survivors so that we can support these. This will help survivors lead the lives they want as adults. In this study, 38 childhood cancer survivors, children’s cancer doctors and nurses, social workers and teachers took part in a series of questionnaires designed to collect their views about social health for survivors. Participants established 22 areas of social health to be very important. ‘Having autonomy’ and ‘avoiding social isolation’ were selected as the most important. Participants felt that the aspects of social health which are important to survivors are the same outcomes as for the wider public. However, survivors may face many barriers to doing well in these areas. To fully identify the important areas of social health for childhood cancer survivors, we need to undertake further work to understand the views of other important groups, such as parents or carers. We also need to explore the barriers survivors face in achieving good social health

Survival from adolescent cancer in Yorkshire, UK

The aim of this study was to investigate survival rates for adolescents with cancer and identify factors associated with differential long-term prognosis in Yorkshire, UK. A survival analysis of a population-based cohort of young adults aged 15–24 years, diagnosed with a malignancy in the former Yorkshire Regional Health Authority between 1985 and 1994 was carried out. The main outcome was death from all causes. Overall survival for the 1097 adolescents with a malignancy increased by 30% between 1985–1989 and 1990–1994 (P=0.004). This improvement was reflected in most subgroups of cancer. Large scale geographical differences in survival rates were observed across Yorkshire, with an increased risk of death in North Yorkshire and Humberside of 34% and 45%, respectively, compared with West Yorkshire. Small scale analyses showed reduced survival in areas of high population density, but no consistent trends were associated with socio-economic status. Improved survival from all cancers in young adults over the last decade is clearly seen. Reasons for differential survival by geographical area are unclear and warrant further investigation

Breast is best: Positive mealtime interactions in breastfeeding mothers from Israel and the United Kingdom

We examined mealtime interactions to assess whether they varied according to maternal body mass index, country and mode of feeding in 41 Israeli and UK mother-infant dyads. Feeding behaviours were coded using the Simple Feeding Element Scale. Significantly, more UK mothers breastfed during the filmed meal compared to Israeli mothers. Mealtime interactions did not vary according to maternal body mass index or country. Women who breastfed (as opposed to those who bottle fed or fed solids) provided fewer distractions during the meal, a more ideal feeding environment and fed more responsively

Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study

Background Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Methods Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Results Three main themes were identified: one standalone theme (“Communication during end-of-life care”); and two overarching themes (“Getting end-of-life services and staff in the right place”, with two themes: “Access to, and staffing of end-of-life care” and “Inconsistent and insufficient funding for end-of-life care services”; and “Linking up healthcare provision”, with three sub-themes: “Coordination successes”, “Role of the networks”, and “Coordination challenges”). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusions Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals’ experiences of delivering care, and families’ experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence

Trends in survival for teenagers and young adults with cancer in the UK 1992-2006

BACKGROUND: Although relatively rare, cancer in teenagers and young adults (TYA) is the most common disease-related cause of death and makes a major contribution to years of life lost in this age group. There is a growing awareness of the distinctive needs of this age group and drive for greater understanding of how outcomes can be improved. We present here the latest TYA survival trends data for the United Kingdom (UK). METHODS: Using national cancer registry data, we calculated five-year relative survival for all 15-24year olds diagnosed with cancer or a borderline/benign CNS tumour in the UK during the periods 1992-1996, 1997-2001 and 2002-2006. We analysed trends in survival for all cancers combined and for eighteen specified groups that together represent the majority of TYA cancers. We compared our data with published data for Europe, North America and Australia. RESULTS: Five-year survival for all cancers combined increased from 75.5% in 1992-1996 to 82.2% in 2002-2006 (P<0.001). Statistically significant improvements were seen for all disease groups except osteosarcoma, rhabdomyosarcoma, non-gonadal and ovarian germ cell tumours and ovarian and thyroid carcinomas. During the earliest time period, females had significantly better survival than males for five of the twelve non-gender-specific disease groups. By the latest period, only melanomas and non-rhabdomyosarcoma soft tissue sarcomas had differential survival by gender. Survival in the UK for the most recent period was generally similar to other comparable countries. CONCLUSION: Five-year survival has improved considerably in the UK for most cancer types. For some disease groups, there has been little progress, either because survival already approaches 100% (e.g. thyroid carcinomas) or, more worryingly for some cancers with poor outcomes, because they remain resistant to existing therapy (e.g. rhabdomyosarcoma). In addition, for a number of specific cancer types and for cancer as a whole males continue to have worse outcomes than females