'Its not meant to be for life, but it carries on: a qualitative investigation into the psychosocial needs of young retinoblastoma survivors

Objective and design
Retinoblastoma (Rb) is a rare childhood eye cancer, with 45% of individuals impacted by heritable disease and the remainder impacted non-heritably. The condition can leave survivors with life-long psychological and social challenges. This qualitative study examined the psychosocial needs of teenagers and young adults living beyond Rb.

Setting
A qualitative, exploratory study was conducted using focus groups with teenagers and interviews with young adults. Participants were recruited via the Childhood Eye Cancer Trust and the two national Rb treatment centres in the UK. Reflexive thematic analysis was used to analyse data using exploratory and inductive methods.

Participants
32 young survivors of Rb (10 heritable, 21 non-heritable, 1 unknown; 23 unilateral, 9 bilateral) aged between 13 and 29 years (12 male, 20 female).

Results
Data were rich and spanned the life course: three key themes were generated, containing eight subthemes. Theme 1 describes participants’ experiences of childhood and trauma, including survivor guilt, memories from treatment and impact on personality. Theme 2 focuses on the challenges of adolescence, including the psychological impact of Rb, the impact on identity, and the sense of normality and adaptation to late effects. The third theme considered adulthood and the development of acceptance, a state of being widely considered unachievable during childhood, as well as the ‘work’ needed to feel supported, including seeking out information, peer support and therapeutic strategies.

Conclusions
This study provides in-depth insight into the experiences of life beyond Rb. Findings highlight the need for specific psychosocial interventions informed by codesign.

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Aprile 2024

Good while it lasted? Estimating the long-term and withdrawal effects of results-based financing in Malawi on maternal care utilisation using routine data

Objectives
This study aimed to evaluate the effect of introduction and subsequent withdrawal of the Results-based Financing for Maternal and Newborn Health Initiative (RBF4MNH) in Malawi on utilisation of facility-based childbirths, antenatal care (ANC) and postnatal care (PNC).

Design
A controlled interrupted time series design was used with secondary data from the Malawian Health Management Information System.

Setting
Healthcare facilities at all levels identified as providing maternity services in four intervention districts and 20 non-intervention districts in Malawi.

Participants
Routinely collected, secondary data of total monthly service utilisation of facility-based childbirths, ANC and PNC services.

Interventions
The intervention is the RBF4MNH initiative, introduced by the Malawian government in 2013 to improve maternal and infant health outcomes and withdrawn in 2018 after ceasing of donor funding.

Outcome measures
Differences in total volume and trends of utilisation of facility-based childbirths, ANC and PNC services, compared between intervention versus non-intervention districts, for the study period of 90 consecutive months.

Results
No significant effect was observed, on utilisation trends for any of the three services during the first 2.5 years of intervention. In the following 2.5 years after full implementation, we observed a small positive increase for facility-based childbirths (+0.62 childbirths/month/facility) and decrease for PNC (–0.55 consultations/month/facility) trends of utilisation respectively. After withdrawal, facility-based childbirths and ANC consultations dropped both in immediate volume after removal (–10.84 childbirths/facility and –20.66 consultations/facility, respectively), and in trends of utilisation over time (–0.27 childbirths/month/facility and -1.38 consultations/month/facility, respectively). PNC utilisation levels seemed unaffected in intervention districts against a decline in the rest of the country.

Conclusions
Concurrent with wider literature, our results suggest that effects of complex health financing interventions, such as RBF4MNH, can take a long time to be seen. They might not be sustained beyond the implementation period if measures are not adopted to reform existing health financing structures.

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Marzo 2024

43 The UCLP-primrose project: transformative care – are we looking at it right?

BackgroundPeople with severe mental illness (SMI) have a higher risk of cardiovascular disease (CVD) and premature mortality than people without SMI. UCLP-Primrose is an evidence-based integrated pathway which guides healthcare staff to support patients with SMI, in order of patients’ CVD risk, to engage with their physical health checks, and when needed, address modifiable CVD risks through intensive behavioural change and support patients’ health and wellbeing in a holistic way including offering peer coaching sessions.AimTo explore and understand factors influencing the implementation of UCLP-Primrose in the current healthcare context.MethodWe are testing a new implementation research protocol which allows within-system learning and an increased chance of our research impacting practice in integrated care teams across three boroughs in London and in Bradford. This includes collecting data about the process (such as from meeting notes covering implementation plans and actions), ethnographic observations, and short and long form interviews with a range of people implementing, delivering, and receiving UCLP-Primrose. Data is being analysed using reflexive thematic analysis, the Consolidated Framework for Implementation Research, and Normalisation Process Theory, with ongoing findings shared with sites through lightning reports.ResultsTriangulated findings to date include insights into how implementation is taking place, and in-depth experiential finding from the reflexive thematic analysis. We will focus our presentation on the early three themes which relate to and have important implications for implementation within the current uncertainty and pressures of healthcare: 1) questioning implementation progress through turbulent contexts, 2) the role of accountability within relational implementation, and 3) transformative care – are we looking at it right?ConclusionOur findings advance understanding and knowledge around implementing interventions aiming to tackle the inequalities around multiple long-term conditions and provide insights into the challenges/gaps for the still developing integrated care system.

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Marzo 2024

13 'Dont let it hold you back: the experience of transition to adulthood in young people with primary ciliary dyskinesia

BackgroundPrimary ciliary dyskinesia (PCD) is a rare genetic ciliopathy characterised by recurrent respiratory infections, sinonasal disease, reduced hearing, infertility and situs inversus. It is a chronic condition with no curative therapy. The aim of this research was to understand the experiences of young people with PCD as they transition into adulthood and to adult healthcare services.MethodsAn interpretative phenomenological analytical method was applied. Semi-structured virtual interviews were conducted with three participants aged 18–24 years who were enrolled via PCD Support UK.ResultsFour interconnected group experiential themes were identified:The first theme was ‘Reconceptualising a stigmatised identity’. Participants demonstrated concealment of their condition and experienced both external and internalised stigmatisation. However, PCD was often reconceptualised as positive and contributory to their identities.The second theme was ‘Sharing the journey to independence’. Support was sought for and found in family, friends and others with shared experiences.The third theme was ‘Entering adulthood with newfound autonomy’. The transition to adulthood was marked by recognition of their own responsibility and the ability to make informed choices about their lives. They sought success in their chosen pathways and mitigated risks arising from their condition in realising these goals.The fourth theme was ‘Anticipating an uncertain future’. Participants shared a concerted yearning to succeed against a future that was entangled with uncertainty in view of their health.ConclusionTransition for young people with PCD is a complex and dynamic period marked by identity-formation, creating systems of support, and becoming an autonomous adult. They remained committed to their hopes and desires and refused to be ‘held back’. The improved understanding of these experiences can be applied to future practice that eases the process of transition, provides appropriate support, and identifies areas for further qualitative research.

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Marzo 2024

First mobilisation after abdominal and cardiothoracic surgery: when is it actually performed? A national, multicentre, cross-sectional study

Objectives
Knowledge of clinical practice regarding mobilisation after surgery is lacking. This study therefore aimed to reveal current mobilisation routines after abdominal and cardiothoracic surgery and to identify factors associated with mobilisation within 6 hours postoperatively.

Design
A prospective observational national multicentre study.

Setting
18 different hospitals in Sweden.

Participants
1492 adult patients undergoing abdominal and cardiothoracic surgery with duration of anaesthesia >2 hours.

Primary and secondary outcomes
Primary outcome was time to first postoperative mobilisation. Secondary outcomes were the type and duration of the first mobilisation. Data were analysed using multivariate logistic regression and general structural equation modelling, and data are presented as ORs with 95% CIs.

Results
Among the included patients, 52% were mobilised to at least sitting on the edge of the bed within 6 hours, 70% within 12 hours and 96% within 24 hours. Besides sitting on the edge of the bed, 76% stood up by the bed and 22% were walking away from the bedside the first time they were mobilised. Patients undergoing major upper abdominal surgery required the longest time before mobilisation with an average time of 11 hours post surgery. Factors associated with increased likelihood of mobilisation within 6 hours of surgery were daytime arrival at the postoperative recovery unit (OR: 5.13, 95% CI: 2.16 to 12.18), anaesthesia

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Febbraio 2024

Study protocol for a randomised open-label clinical trial examining the safety and efficacy of the Android Artificial Pancreas System (AAPS) with advanced bolus-free features in adults with type 1 diabetes: the 'CLOSE IT (Closed Loop Open SourcE In Type 1 diabetes) trial

Introduction
Multiple automated insulin delivery (AID) systems have become commercially available following randomised controlled trials demonstrating benefits in people with type 1 diabetes (T1D). However, their real-world utility may be undermined by user-associated burdens, including the need to carbohydrate count and deliver manual insulin boluses. There is an important need for a ‘fully automated closed loop’ (FCL) AID system, without manual mealtime boluses. The (Closed Loop Open SourcE In Type 1 diabetes) trial is a randomised trial comparing an FCL AID system to the same system used as a hybrid closed loop (HCL) in people with T1D, in an outpatient setting over an extended time frame.

Methods and analysis
Randomised, open-label, parallel, non-inferiority trial comparing the Android Artificial Pancreas System (AAPS) AID algorithm used as FCL to the same algorithm used as HCL. Seventy-five participants aged 18–70 will be randomised (1:1) to one of two treatment arms for 12 weeks: (a) FCL—participants will be advised not to bolus for meals and (b) HCL—participants will use the AAPS AID algorithm as HCL with announced meals. The primary outcome is the percentage of time in target sensor glucose range (3.9–10.0 mmol/L). Secondary outcomes include other glycaemic metrics, safety, psychosocial factors, platform performance and user dietary factors. Twenty FCL arm participants will participate in a 4-week extension phase comparing glycaemic and dietary outcomes using NovoRapid (insulin aspart) to Fiasp (insulin aspart and niacinamide).

Ethics and dissemination
Approvals are by the Alfred Health Ethics Committee (615/22) (Australia) and Health and Disability Ethics Committees (2022 FULL 13832) (New Zealand). Each participant will provide written informed consent. Data protection and confidentiality will be ensured. Study results will be disseminated by publications, conferences and patient advocacy groups.

Trial registration numbers
ACTRN12622001400752 and ACTRN12622001401741.

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Febbraio 2024