Cutaneous T cell lymphoma (CTCL) is a group of non-Hodgkin lymphomas that primarily affects the skin and can mimic inflammatory dermatoses. Unlike many skin diseases, CTCL can lead to disabling symptoms, and advanced CTCL can even be fatal. Early studies investigating health-related quality of life (HRQOL) in patients with mycosis fungoides (MF) and Sézary syndrome (SS), common subtypes of CTCL, demonstrated significant impairment across numerous domains. The aim of this current study is to develop a core domain set (CDS) to identify the essential aspects of MF/SS that influence HRQOL that should be measured in therapeutic clinical trials. In the future, this set of core concepts will be used to identify the best patient- reported outcome measure(s) (PROM) for HRQOL for MF/SS clinical research.

Multiple strategies will be used to generate candidate concepts: systematic review of the literature, qualitative study and a survey study of healthcare providers. A Delphi consensus process including a comprehensive group of stakeholders (patients, caregivers/care partners, a multidisciplinary group of healthcare professionals, patient advocacy groups, pharmaceutical industry representatives, methodologists and government agencies) will be used to achieve consensus. Statistical corrections for multiple significance testing and false positive findings will be undertaken.

The study was submitted for and received institutional review board approval at the University of Washington (IRB# STUDY00018890 and STUDY00019407). Informed consent will be obtained from all participants where necessary. We will disseminate our findings through peer-reviewed, open access publications and presentations at national/international conferences. We will provide a plain language summary in lay terms for patients and families to patient advocacy groups for distribution to their network.

The protocol is registered in the Core Outcome Measures in Effectiveness Trials (COMET) database.

Despite the increasing availability of non-invasive prenatal testing (NIPT), women’s experiences and motivations remain largely unknown. The use of NIPT is increasing in Italy; however, its organisation and access paths vary considerably. Women may undergo testing in either public or private facilities, where differences in pretest information, testing procedures and result communication may influence their experience. This study aims to investigate the attitudes, awareness and experiences of Italian women undergoing NIPT.

A cross-sectional anonymous online survey was conducted via social media in the period March–August 2023.

This nationwide study was conducted in Italy.

Women over 18 years old who had undergone NIPT were included.

Responders were 4154 women from every part of Italy. Most participants perceived the information provided during pre-NIPT counselling as extremely/very clear (68.2%) and helpful (72.5%), with higher proportions observed when counselling was delivered by geneticists. The mean knowledge score was 12.3 (range: 0–15) and was statistically higher for women with higher education level and prior NIPT experience. Half of the women reported no change in their perceived risk of having a child with chromosomal abnormalities after pre-NIPT counselling, and risk perception reduction was associated with lower knowledge scores. Pretest negative emotions were common (54.9%) and influenced by testing context, information sources and reasons for testing. Most women reported a positive impact from results (92.7%), shaped by information delivery made and prior knowledge. Regret was rare (3.0%) and linked to reasons and perceived risk changes. Overall, satisfaction was high (97.3%), particularly among those prioritising informed decision-making.

Improving personalised counselling and education throughout the NIPT journey seems crucial to minimise negative emotional impacts, highlighting the need for well-trained healthcare professionals.

Stillbirth remains a major global health challenge, with India bearing a substantial share of the burden. Despite the availability of evidence-based interventions, stillbirth rates (SBRs) remain high due to gaps in healthcare access, quality and the effective delivery of maternal and neonatal care. This study aims to develop and implement an optimised, context-specific model to reduce SBRs in Sangrur district, Punjab.

This mixed-methods implementation research will adopt a sequential explanatory design. The study will be conducted over 3 years in four blocks of Sangrur. Data will be collected through baseline and endline surveys, verbal autopsies of stillbirths, direct observations of antenatal and intrapartum care, and qualitative interviews with community members and healthcare providers. The intervention package will focus on preconception and antepartum care, intrapartum care and strengthening health systems. The study will use the plan-do-check-act model for continuous improvement, and real-time data collection through electronic systems will support timely decision-making.

The study expects to achieve a 25% reduction in SBRs through the optimised delivery of high-quality antenatal and intrapartum care services. Additionally, the research will provide critical evidence on the barriers and facilitators to optimise service delivery, as well as insights into the health system and community factors influencing stillbirth outcomes. This study aims to create a scalable and adaptable intervention model to reduce SBRs in low-resource settings like Sangrur and Punjab. The findings will inform future maternal and neonatal health policies and provide a framework for the broader implementation of similar interventions in other regions of India.

The study protocol has been approved by the International Institute of Health Management Research, Delhi (IIHMR) Institutional Ethics Committee (IRB/2024-2025/01). The study is funded through a competitive call for proposals on stillbirths by the Indian Council of Medical Research (ICMR) under the National Health Research Priority Projects (5/7BMIPR/2022-RBMCH). The research has been awarded by ICMR (project ID NHRP05586) to IIHMR under grant number 5/7/BMIPR/2022-RCN.

To adapt the Serious Illness Conversation Guide (SICG), Ariadne Labs, Massachusetts USA, to a local Singapore version and evaluate its acceptability.

Qualitative study using semistructured interviews.

49 participants (30 patients with serious illnesses, five family caregivers and 14 healthcare providers (HCP)) recruited from three public hospitals in Singapore.

Face-to-face or virtual indepth interviews.

Guided by the Heuristic Framework and Cultural Sensitivity model, we employed a multi-stage iterative design. Starting with the original SICG, we iterated the guide following three rounds of cognitive interviews among patients followed by expert consultation (n=4) to derive a local version, subsequently reviewed by caregivers and HCP. We assessed acceptability of the SICG using traffic light colour codes—red (unacceptable), orange (needs change) and green (no change) and gathered suggestions to rephrase them. Using content analysis, we compared acceptability of questions as proportion of red, orange and green responses at each interview round and inductively derived themes reflecting views towards the guide.

The original SICG showed low acceptability, and most questions received high proportions of red responses. Negative words and phrases dampening hope, lack of comprehension due to complex framing and cultural insensitivity to prognostic discussions were key themes reflecting low acceptability. Surface and deep structural revisions that centred around positive framing with hopeful language, focusing on current values and individualising conversations (‘use if appropriate’ prompts) significantly improved the guide’s acceptability.

We derived a local Singapore SICG that aligns with the core elements of the original guide and fosters cultural sensitivity. The adapted version could be further tested in other Asian countries.

Intrapartum-related complications are a leading cause of adverse perinatal outcomes, including stillbirths, neonatal deaths and intrapartum-related neonatal encephalopathy (IP-NE). We assessed the prevalence of adverse intrapartum-related outcomes, evaluated the association between IP-NE and obstetric and fetal risk factors, and examined whether emergency referral and emergency caesarean section (CS) modified this association through interaction effects.

Cross-sectional with a nested case–control study.

Two hospitals in rural Eastern Uganda.

Women giving birth to a live or stillborn baby weighing >2000 g between June and December 2022.

We used prospectively collected perinatal e-registry data to assess the prevalence of adverse perinatal outcomes. Logistic regression with interaction with postregression margins analysis was used to determine the association between IP-NE and emergency referral and emergency CS across risk groups of hypertensive disorders, antepartum haemorrhage, prolonged/obstructed labour and birth weight.

Adverse perinatal outcomes were stillbirths, 24-hour neonatal deaths and IP-NE (defined as Apgar score

Of 6550 births, 10.2% had an adverse perinatal outcome: 3.8% stillbirths, 0.6% neonatal deaths and 5.7% IP-NE. Adverse outcomes were higher among neonates whose mothers had antepartum haemorrhage (31.3%) or prolonged/obstructed labour (27.2%) compared with those whose mothers had no complications. Emergency referral and CS did not change the association between IP-NE and obstetric risk, except in prolonged/obstructed labour. Without emergency CS, the predicted probability of IP-NE was 0.73 (95% CI 0.51 to 0.95); with CS, it decreased to 0.45 (95% CI 0.39 to 0.50).

Neonates born to mothers with obstetric complications had low healthy survival rates. Emergency referral and CS did not alter the risks of IP-NE in women with obstetric complications except for obstructed or prolonged labour, highlighting that these interventions may not be implemented with sufficient timeliness or quality, and/or that additional, more targeted strategies beyond referral and CS are needed to address IP-NE.

To investigate whether gestational diabetes mellitus (GDM) was associated with survival without bronchopulmonary dysplasia (BPD) in very preterm infants (VPIs).

Retrospective multicentre cohort study.

A total of 79 neonatal intensive care units across China, January 2019 to December 2021.

A total of 23 752 VPIs (

The primary outcomes are survival without BPD at 36 weeks’ postmenstrual age (PMA) and its components.

Infants exposed to GDM were associated with a higher rate of survival without BPD (aOR 1.12, 95% CI 1.04 to 1.21) at 36 weeks PMA and lower mortality (aOR 0.75, 95% CI 0.64 to 0.84) before 36 weeks PMA than unexposed infants. However, no significant association was observed between GDM and BPD at 36 weeks PMA (aOR 0.94, 95% CI 0.87 to 1.02), respiratory distress syndrome, need for advanced resuscitation or mechanical ventilation. After propensity score matching, GDM-exposed VPIs maintained higher survival without BPD (aOR 1.13, 95% CI 1.02 to 1.26) and lower mortality (aOR 0.81, 95% CI 0.68 to 0.97). These associations were strongest in infants born before 28 weeks (aOR 1.32, 95% CI 1.11 to 1.57) and those small for gestational age (aOR 1.41, 95% CI 1.11 to 1.80).

GDM was not associated with worsened BPD in VPIs. The positive association with survival and survival without BPD warrants could reflect a selection bias.