Research to inform, co-develop and evaluate optimal care for women with early-onset type 2 diabetes (EOT2D) before, during and after pregnancy is lacking. Informed by patient perspectives and the results of the James Lind Alliance priority-setting partnership in diabetes in pregnancy, we aimed to develop a consensus statement to guide future research efforts to meet the needs of women with EOT2D in the preconception, pregnancy and postnatal periods. Results from three systematic reviews covering interventional, observational and qualitative studies were presented at the Diabetes UK annual professional conference in Glasgow in February 2025. The results were discussed by an expert panel with audience participation. There is very limited research to guide care for women with EOT2D, especially in the preconception and postnatal periods. In pregnancy, there have been limited studies assessing interventions, mainly encompassing medication and glucose sensor use, but most are small and have limited generalisability. Observational data suggests that managing glycaemia, addressing maternal BMI and preventing excessive gestational weight gain improve outcomes for women with EOT2D in pregnancy. Qualitative data highlight the negative impact of EOT2D on pregnancy and the need for optimised support. Targeted, innovative and cross-cultural studies across the reproductive life course are urgently needed to address the short and longer-term maternal and offspring risks for individuals with EOT2D. Given the rising prevalence of EOT2D and the risk of adverse pregnancy outcomes for women with EOT2D and their children, prioritising research in the preconception, pregnancy and postnatal periods is vital to ensure that care needs are met to improve health outcomes for women and their children.

Capturing the Patient Perspective: The Missing Voice in the World of Hospital Expansion.

This study aims to assess for indications of stigma and attitudes toward cannabis among cancer survivors (CS) who use or consider the use of cannabis. This study employed a convergent, parallel mixed methods design utilizing focus group and questionnaire data to assess the presence of stigma among a sample of CS (n = 23) who use (n = 10) and do not use (n = 13) cannabis to manage symptoms. CS were recruited from a multi-site observational study in the Northeast U.S. region that assesses cannabis use among oncology patients. A total of 23 CS participated in this study. In general, this sample appeared to have positive attitudes towards cannabis, as indicated by quantitative results, and most CS felt accepting or neutral about other CS using cannabis, irrespective of whether they used or not. Most CS did not indicate experiences of stigma for cannabis use, did not feel judged by their medical providers, and indicated a feeling of empowerment to do whatever was needed to feel better. However, several CS reported intentional nondisclosure to their providers. Many CS discussed the presence of opioid-related stigma, both perceived from society and internalized, which appeared to play an important role in their symptom-management decision-making. Findings from this study suggest that while cannabis stigma may not be commonplace for CS, some do experience it. Further, opioid stigma appears to be perceived and intertwined in the decision-making processes for CS in this sample.

BackgroundSocial media provides a novel data source for understanding palliative care from the perspectives of patients and their family caregivers. Nonetheless, no study has examined palliative care-related information on Japanese social media. This study aimed to identify the characteristics of palliative care information on Japanese social media.MethodsPosts published on X (formerly Twitter) during the first week of each month from January to June 2024 that included 1 or more of the following terms were manually collected: "palliative care," "end-of-life care," or "palliative medicine." Posts were analyzed inductively. A Japanese sentiment analysis model was applied to assign a sentiment score (0-1) to each post, with higher scores indicating more positive sentiment. The top 50 posts with the highest sentiment scores and the bottom 50 posts were further analyzed using the same qualitative approach.ResultsIn total, 4689 posts were collected; of these, 3806 (81.2%) were related to palliative care. Thirteen categories were identified. The most frequent category was "general explanations about palliative care" (n = 1,280, 27.3%), followed by "sharing information about palliative care services" (n = 757, 16.1%). Posts with the lowest sentiment scores included "opinions or demands toward end-of-life care systems," "opinions or demands towards medical practice and dissemination of palliative care," and "reporting experiences of patients and informal caregivers."ConclusionJapanese social media platforms may provide valuable insights into family caregivers' experiences, potentially representing a resource for assessing the palliative care quality. Future studies should evaluate the validity of palliative care-related information on social media.

Proton pump inhibitors (PPIs) are widely prescribed in primary care but often continued longer than clinically necessary, exposing patients to avoidable risks. Digital decision-support tools have been proposed to assist clinicians in identifying and managing potentially inappropriate medications. The arriba-PPI tool was developed to facilitate conversations on PPI deprescribing between general practitioners (GPs) and patients, supporting evidence-based and shared decision-making. To explore GPs' experiences with the arriba-PPI tool in clinical practice and understand factors influencing its use and impact on PPI prescribing and discontinuation. A qualitative exploratory study embedded within a multicentre cluster-randomised controlled trial conducted in German general practices. Semi-structured interviews were conducted with 26 GPs from the intervention arm who had used the tool. Interviews were analysed following Braun and Clarke's six-step thematic analysis methodology, applying a combined deductive-inductive approach. Six main themes emerged: perceived usefulness and acceptance of the tool; tool functionality and areas for improvement; patient perspectives and characteristics; doctor-patient interaction and consultation dynamics; PPI prescribing and discontinuation practices; and implementation context and long-term use. GPs valued the tool's structured format and visual aids for enhancing communication, particularly with patients reluctant to stop PPIs. Some described an educational benefit, reporting greater awareness and reflection on their own prescribing behaviour. Barriers to sustained use included technical issues, workflow integration challenges, and the absence of non-pharmacological alternatives. Trust and established doctor-patient relationships were seen as critical for successful deprescribing, often surpassing the tool's direct influence. While the arriba-PPI tool supports deprescribing conversations, its effectiveness depends on seamless integration, technical optimisation, and complementary non-drug strategies. Future digital interventions should follow established frameworks for complex intervention development, adopt a more holistic approach, and combine technological support with broader patient-centred care to achieve sustained deprescribing success in primary care.

Bacillus Calmette-Guerin (BCG) following transurethral resection of bladder tumor (TURBT) is the current standard of care (SOC) for high-risk non-muscle invasive bladder cancer (HR-NMIBC). Several emerging therapies, such as immune checkpoint inhibitor (ICI) therapies in combination with BCG will provide new treatment options for patients. Patient preference studies can provide quantitative evidence of the trade-offs patients are willing to make among attributes of current and emerging treatments. Qualitative research is critical to developing preference elicitation instruments that capture decision-relevant treatment attributes. This study aimed to elicit information about HR-NMIBC patients'treatment priorities and evaluate a preliminary list of attributes and levels to be used in a patient preference survey. A targeted literature review produced a preliminary list of 11 attributes. Qualitative, semi-structured, multi-method telephone interviews with 12 patients with HR-NMIBC in the USA were used to explore treatment decision drivers and assess comprehension and relevance of the attributes and levels. Patients with HR-NMIBC were recruited via patient advocacy groups. A combination of concept elicitation, cognitive debriefing, and rating and ranking exercises were used to assess patients' priorities and perspectives regarding decision-relevant treatment attributes. Efficacy (event-free survival) was the most important attribute to all patients. The risk of serious/life-threatening events was also very important to patients. The risk of experiencing bladder problems and the choice between different administration procedures (route, frequency) were also important in the context of patients' treatment choices. The preliminary list of attributes and levels was subsequently refined to reflect patient priorities and incorporate feedback from expert advisors. This is the first study, to our knowledge, that provides qualitative evidence regarding patients' preference for potential future treatment options for HR-NMIBC. Findings will inform the final selection and framing of attributes and levels to be included in an upcoming benefit-risk preference study. Future research is warranted to quantify any trade-offs that patients with HR-NMIBC are willing to make regarding administration, benefit, and risk attributes.

Functional neurological disorder (FND) is a neuropsychiatric disorder that manifests with involuntary neurologic symptoms because of a brain network dysfunction, arising from variable biopsychosocial etiologies. Symptoms have positive clinical features of inconsistency, like tremor entrainment or distractibility, and incongruence with typical or well-understood neurophysiology/neuroanatomy. FND is not a diagnosis of exclusion and diagnostic criteria are available for many FND phenotypes.

Social inequalities in cancer constitute a major public health challenge. A lower socioeconomic position (SEP) is consistently associated with higher exposure to cancer risk factors, lower participation in screening, more advanced stage at diagnosis, poorer survival, and adverse survivorship outcomes. In Germany, these inequalities remain insufficiently addressed in research and health policy. This paper synthesises evidence and expert perspectives derived from a national workshop organised by the Cancer Epidemiology Working Group of the German Society for Epidemiology (DGEpi) in collaboration with the German Cancer Research Center. More than 30 experts in cancer epidemiology and social inequality research, together with international contributors, reviewed-based on existing conceptual frameworks-the German data landscape, and empirical evidence across the cancer continuum. Structural, methodological, and ethical barriers were identified, and implications for research, policy, and practice were discussed. An international comparison with Denmark was used to contextualise findings. Available evidence demonstrates pronounced socioeconomic inequalities across nearly all stages of the cancer continuum in Germany, including prevention, screening, incidence, diagnosis, survival, and survivorship. However, major research gaps persist. Key barriers include limited availability of individual-level SEP data, reliance on area-based deprivation indices, restricted data linkage, fragmented healthcare structures, and limited integration of equity considerations into national cancer strategies. International experience shows that comprehensive registries, data linkage, and targeted interventions can reduce inequalities. Reducing social inequalities in cancer in Germany requires coordinated and evidence-based action. Priorities include improving SEP data availability and linkage, embedding equity objectives into the National Cancer Plan, implementing targeted interventions for vulnerable groups, and strengthening intersectoral collaboration. Ethical and patient perspectives strongly support responsible use of health data to address avoidable inequalities.

Long-acting injectable antiretroviral therapy (LAI-ART) offers an alternative to daily oral treatment but is typically administered in clinics, which can create barriers for some people with HIV (PWH). Home-based administration by trained treatment buddies (TBYs)—trusted partners, friends, or family members—has not been systematically studied. We conducted semi-structured interviews with 31 participants (16 PWH and 15 TBYs) across 4 HIV clinics in the San Francisco Bay Area between June 2024 and April 2025. Guided by the Consolidated Framework for Implementation Research (CFIR), interviews explored anticipated facilitators, barriers, and training needs for home-based LAI-ART. Participants identified several anticipated benefits of home-based LAI-ART, including increased convenience, reduced transportation burdens, enhanced privacy, comforting and emotionally supportive care, and opportunities to foster empowerment and shared responsibility between PWH and TBYs. Key barriers included concerns about medication storage and delivery logistics, maintaining reliable injection schedules, needlestick safety, and the readiness and confidence of TBYs. Participants emphasized the need for hands-on training, ongoing support, and clear protocols to ensure safe, acceptable, and effective home-based administration. These findings underscore the importance of proactive planning and tailored support in addressing both the technical and emotional dimensions of home-based LAI-ART. Anticipating these needs can facilitate the successful implementation and expand access to person-centered HIV care.

Clinical, practical, and psychosocial challenges of living with glucose transporter type 1 deficiency syndrome.

Spirituality is widely recognized to play an important role in the experience of terminally ill cancer patients, and several studies have shown that spiritual dimensions in their care can significantly enhance their quality of life and emotional well-being. The FICA© Spiritual History Tool, developed by Dr. Christina Puchalski, provides clinicians with a framework for addressing patients' spiritual histories. The aim of this study was to translate, culturally adapt, and apply the FICA© Spiritual History Tool in a sample of Italian end-of-life cancer patients and to identify the spirituality-related themes that emerge. The cultural adaptation process included forward-backward translations of the FICA© Spiritual History Tool, followed by its application through in-person conversations. Of the 95 eligible participants, 80 terminally ill cancer patients (84%) were included. A thematic analysis of the responses was conducted. Findings indicated that spirituality can provide a source of support for many Italian patients coping with terminal cancer. Spirituality was most frequently reflected with the Catholic faith. Some participants reported not belonging to any specific religious community; instead, they primarily relied on the support received from family and friends. The Italian version of the FICA© Spiritual History Tool is clear, understandable and focused on exploring spirituality and its relevance in end-of-life conversations. Healthcare providers (HCPs) should be informed about and encouraged to use this tool to gather essential information about their patients' spiritual history and perspectives, supporting personalized care beyond their physical illness.

Navigating the complexities of rectal cancer management: Shared decision-making and patient perspectives in critical choices.

Patient perspectives on recovery and satisfaction after hemipelvectomy for pelvic tumors.

Skin quality attributes are defined inconsistently in clinical and research settings, which can impede communication between patients and health care professionals (HCPs) and hinder optimization of patient outcomes. The authors aimed to develop a skin quality vocabulary/lexicon applicable across multiple stakeholders, including aesthetic HCPs, patients, researchers, and regulatory agencies. The authors convened advisory boards comprising 15 global aesthetic dermatologists to develop consensus definitions for 15 skin quality attributes based on a previously proposed framework. These definitions were used in qualitative patient focus groups (n = 54) and quantitative online surveys of aesthetic HCPs (n = 201) and patients (n = 1,050) to assess preferred terms for each attribute. The advisory board developed definitions with 100% consensus for all 15 attributes after 2 meetings. The quantitative surveys demonstrated substantial agreement in terminology used between HCPs. However, as expected, terminology used by patients and HCPs differed for a number of conditions, including uneven pigmentation, crepiness, and laxity. This research identified skin quality attribute terminology/definitions used among HCPs and patients. The authors hope this work will establish a foundation for consistent definitions that will help support patient-HCP communication, optimize outcomes, and bring clarity to the indication for approval by regulators.

Patient perspectives and preferences are important when establishing quality and cost metrics for value-based payment (VBP) models, to ensure patient-centered cancer care and VBP incentives are aligned. Insights were gathered about value-based care (VBC) models from patients with Medicare and one of 4 common cancers (multiple myeloma, bladder, lung, and prostate) included in Medicare's Enhancing Oncology Model. This study included 4 virtual 2-hour focus groups and a 2-hour co-creation session. Aspects of cost and quality important to cancer care were identified (value is defined as the ratio of quality/cost). Insights from the focus groups (n = 20) and co-creation session (n = 6) highlighted a lack of awareness about VBC and concerns about the effect of financial incentives on oncology care. Focus group participants identified shared decision-making and treatment effectiveness outcomes as the most important elements of quality. Co-creation participants highlighted a need for improved awareness about the implications of VBP incentives for oncology care decisions. In this exploratory qualitative research, patients with cancer expressed a need for transparency of VBC dynamics to help preserve the patient-physician relationship and their ability to receive innovative, affordable, and accessible care.

Reimbursement reviews are comprehensive assessments of the clinical effectiveness and cost-effectiveness, as well as patient and clinician perspectives, of a drug or drug class. The assessments inform nonbinding recommendations that help guide the reimbursement decisions of Canada’s federal, provincial, and territorial governments, with the exception of Quebec. This review assesses Daridorexant (Quviviq), 25 mg oral tablet, 50 mg oral tablet. Indication: Quviviq (daridorexant) is indicated for the management of adult patients with insomnia, characterized by difficulties with sleep onset and/or sleep maintenance.

High workload among general practitioners (GPs) threatens clinician well-being and quality of care. Ambient scribes offer a potential solution, but evidence on their effectiveness is limited and overlooks the patient perspective. We conducted a prospective multicentre, multi-perspective, before-after longitudinal mixed-methods study on an ambient scribe in the Netherlands with 12 GPs and GPs in training without prior experience with ambient scribes. Outcomes were assessed over a two-day baseline and two-day intervention period. The primary outcome was clinical documentation time and secondary outcomes included total consultation time, documentation quantity and quality, patient and GP experiences, acceptability, and usage. Between December 2024 and July 2025, 535 patient consultations were observed. Clinical documentation time was reduced by 42.7 s per consultation (95% CI - 56.29 to -30.78; p < 0.0001), while total consultation time did not change. Qualitative analyses showed reduced perceived workload among GPs and, for some patients, improved communication. Potential drawbacks were inaccurate summaries, barriers for discussing sensitive information, and interference with the clinician's reasoning process. These findings show that ambient scribing may meaningfully reduce documentation burden and support communication, but further investigation is required to understand and mitigate unintended consequences for quality and accessibility of care.

This review provides an examination of studies investigating the patient and provider perspectives on the collection of sexual orientation and gender identity (SOGI) data in the health care setting. Searches were conducted using MEDLINE, CINAHL Complete, Web of Science, APA PsycINFO, Dissertations and Theses Global, Scopus, Sociological Abstracts, and Global Index Medicus for articles published January 1, 2000, to February 16, 2022, containing concepts of sexual orientation, gender identity, and data collection methods. The initial search yielded a total of 4356 records. Studies that reported results related to patient and staff perspectives on data collection for SOGI in a health care setting were analyzed as full text. Rayyan software was used for the abstract review. Twenty-five studies met the inclusion criteria. Two reviewers performed data extraction. All of the studies were observational, including 14 interview/focus group qualitative studies and 11 survey studies. In general, patients were favorable toward SOGI data collection; however, there were concerns about confidentiality and discrimination. Providers were less confident in collecting SOGI data, especially in situations lacking adequate training, and articulated concerns about the potential for offending patients. Patients regard SOGI data collection as an acceptable practice. However, to avoid offending or confusing patients, health care staff should receive focused training on how to ask SOGI questions, including the clinical relevance of these data.

P0830 A qualitative study on the avoidance behavior of seeking help for sexual health after radical prostatectomy from the perspectives of patients and physicians

Empowerment or responsibilisation: Articulation work in English primary care coordination from the perspectives of patients and clinicians.