The Development and Feasibility of a Novel Electronic Patient-Reported Outcome Measures (Eproms) Questionnaire in patients with penile cancer.

BACKGROUND: Penile cancer (PeCa) is a rare cancer with surgical options that affect patients' quality-of-life. Patient-reported outcome measures (PROMs) are uncommonly utilized in this cohort despite their several patient-centered benefits and there are recommendations to further digitalize PROMs. This prospective, population-based study aimed to report the development and feasibility of a novel electronic patient-reported outcome measures (ePROMs) questionnaire for patients with PeCa. MATERIALS AND METHODS: A novel ePROMs questionnaire was developed and sent to patients 3 days before outpatient clinic appointments. The questionnaire included up to 30 items on patient symptomology and quality-of-life, including a self-reported quality-of-life score (rated 0 being worst and 100 being best). Data were collected for patients followed up between August 2021 and May 2022. The primary feasibility outcomes, adherence and engagement, were measured by response and drop-out rates. Differences in responders and nonresponders were also ascertained. Secondary outcomes explored the clinical utility of the questionnaire. Responders were subcategorized into 3 groups: circumcision (Ci), partial penectomy (PP) or total penectomy (TP) and differences were analyzed. This study was approved by the local Trust Governance Panel, including for ethical considerations. RESULTS: 220 adult males were sent ePROMs questionnaires, and 141 (64%) responded initially. The mean dropout rate of subsequent questionnaires was 56%. The maximum number of questionnaires sent to and completed by a patient was 8 (n = 1). Nonresponders were older (P < .0001), with poorer performance status (P < .0001) and lower body mass index (P = .0288). TP patients reported the lowest median quality-of-life score 68.50 (8-99), followed by the Ci group (72.0, 37-94) and the PP group (76.0, 10-99). CONCLUSIONS: Patients initially engaged and adhered to the ePROMs questionnaire but struggled to maintain this over time. Clinical data gathered by the questionnaire may be utilized to inform patient care. The questionnaire requires additional validation, research, and education.

Mental Health Promotion in Hong Kong: A Service Evaluation of the Coolminds Pilot Study.

BACKGROUND: It is vital to improve the mental health (MH) of young people in Hong Kong, where the suicide rate has nearly doubled among those aged 15-29 years since 2014. This multi-method evaluation aimed to assess Coolminds, which promoted MH literacy by engaging students, parents, and educators in secondary schools in Hong Kong. METHODS: Students, parents, and teachers completed self-report measures before and after attending workshops aimed at raising MH literacy. Pre- and post-survey data were collected between November 2021 and August 2022. Qualitative data from participant feedback and a focus group interview with Coolminds staff were analyzed using descriptive content analysis. RESULTS: The final dataset included 2903 students, 395 parents, and 325 educators from 52 schools. Only 3 schools had engagement with all 3 key groups. Significant improvements in MH knowledge were observed after the Coolminds workshops for all 3 groups. Qualitative analysis identified a reactive approach to MH issues, and bureaucratic and logistical challenges as barriers to implementation. CONCLUSION: Findings support the effectiveness of the Coolminds curriculum in improving MH literacy for each group and the demand for MH promotions in school settings. The implementation challenges indicate the need for future initiatives to better align with local needs and practices.

Assessing the success of a research leadership programme for senior nurses and midwives: A mixed methods programme evaluation.

AIMS: In 2018 the National Institute of Health and Care Research, United Kingdom, launched a 3-year Senior Nurse and Midwife Research Leader Programme to support nurse and midwifery research leaders to develop research capacity and capability within NHS organisations. We report the results of a service evaluation of the programme strengths, areas for improvement and achievement of programme aims. DESIGN: Partially mixed, concurrent mixed methods programme evaluation, including: (a) meeting evaluation (survey), (b) annual evaluation (survey) and (c) qualitative stakeholder interviews. METHODS: Survey results were quantitatively analysed using descriptive statistics. Interviews were audio-recorded, transcribed, deductively coded using elements within the logic model and analysed using the seven-stage framework analysis method. RESULTS: Satisfaction with the programme was high (75%). The main perceived benefit of the programme was being part of a network. Challenges included accessing learning resources, lack of opportunity to network and lack of clarity about the programme aims. Meetings were evaluated as relevant and helpful (mean 93%), thought-provoking (92%), inspiring (91%), at the appropriate level (91%) and aligned with the programme aims (90%). All meetings were ranked as highly beneficial by attendees (92%). Stakeholder feedback on the programme success reflected the importance of leadership, the programme design and content, 'connection and community' and communication with and about the cohort. Overall, the anticipated programme aims were met, evaluating well from both the perspective of those on the programme and the wider stakeholder group. There has been a lack of investment in schemes to support research leadership development for nurses/midwives. A novel programme to support nursing/midwifery research leadership was positively evaluated. The programme is a useful model to support future capacity and capability building for nurses/midwives. The work is reported with reference to the SQUIRE 2 and SRQR checklists. No patient or public contribution.

Evaluation of the Perceived Benefits of a Peer Support Group for People with Mental Health Problems.

This paper reports on a service evaluation of PeerTalk, a nationwide charity that organises and facilitates peer support groups for individuals with depression. Therefore, the aim was to gather and synthesise benefits perceived by support group attendees. Thematic analysis was undertaken following the collection of data from two group interviews comprising PeerTalk support group attendees. Once those data were analysed, five key themes emerged: (1) talking/listening, (2) socialising, (3) contrast with other services, (4) personal benefits, and (5) structure and accessibility. Two further minor themes were also identified: (6) wider benefits and (7) areas for development that could lead to overall improvements to the service. PeerTalk's support groups provide multiple opportunities for attendees to meet others who have similar experiences within an environment that does not require formal engagement or commitment. Those that attend find benefit from supporting others and socialising within the group. These benefits are complementary to mainstream services that they may concurrently be involved with, rather than replacing or hindering them. Peer support groups can therefore provide a resource for healthcare professionals to which they can direct individuals who may feel benefit from engaging with other individuals with similar experiences. Sheffield Hallam University granted ethics approval for the study (ER:59716880) prior to its commencement (16 February 2024).

Community-based health programme for nurses and midwives: A mixed methods evaluation.

AIM: To evaluate a community-based psychological health and well-being programme for nurses and midwives. DESIGN: Mixed methods programme evaluation. METHODS: Four studies were included: observational descriptive study (cross-sectional survey) of the health, well-being and experiences of previous programme participants (Study 1); observational exploratory prospective cohort study (longitudinal survey) of health, well-being and experiences of participants who engaged in the programme from 2020 to 2023 (Study 2); qualitative descriptive study (interviews) of experiences and perceptions of nurses and midwives who have engaged with the programme as participants or clinicians (Study 3); observational descriptive study (cross-sectional survey) of experiences and perceptions of programme stakeholders (Study 4). Surveys included validated measures. Data were collected online. Descriptive, repeated measures and thematic analyses were conducted. RESULTS: One-hundred and fifteen participants completed Study 1: 20% (n = 23) reported stress in the severe-to-extremely severe category; 22% (n = 25) reported psychological distress in the moderate-to-severe category. Thirty-one programme participants were followed in Study 2: the effect of the programme on participant well-being over time was not significant. Sixteen programme participants and eight programme clinicians were interviewed (Study 3). Experiences of nurses and midwives engaging with the programme were highly positive and strong attributes of the programme included (1) shared professional experience of clinicians and participants which supported a common language and facilitated understanding, and (2) effective programme leadership, and autonomy and flexibility in the clinicians' role which enabled and supported a positive working experience. Thirty-nine broader stakeholders participated in a cross-sectional survey (Study 4). All stakeholders reported high satisfaction with the programme. Participants considered the programme being 'by nurses and midwives, for nurses and midwives' critical to the programme's success and value. CONCLUSIONS: The community-based psychological health and well-being programme developed, led and delivered by nurses and midwives, for nurses and midwives, was a highly valued resource. IMPACT: Levels of stress and burnout in the health workforce are high. A community-based psychological health and well-being programme for nurses and midwives was found to be an important and highly valued resource for nurses and midwives. A programme delivered by nurses and midwives, for nurses and midwives, was considered critical to programme success. Programme leadership, and autonomy and flexibility in the programme clinicians' roles, facilitated and supported a positive working experience for programme clinicians. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Quality and safety in patient care is directly impacted by the well-being of nurse and midwives. A community-based psychological health and well-being programme for nurses and midwives was found to be an important and highly valued resource for nurses and midwives. REPORTING METHOD: Survey findings were reported according to STROBE (von Elm et al. in Lancet, 370:1453-1457, 2007) and qualitative findings according to COREQ (Tong et al. in International Journal for Quality in Health Care, 19(6):349-357, 2007). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Hospice inpatient care models: cross-sectional inequality survey.

OBJECTIVES: Hospices provide a range of services including inpatient units (IPUs) and care in people's homes. 40 000-50 000 patients use IPUs in the UK per year. Little published data exist on IPU models. This paper explores the structure and funding of IPU across the Southwest (SW) of England (population 5.6 million), alongside impact of COVID-19. METHODS: An electronic survey of all 13 IPUs. Data collated, tabulated and compared with national commissioning guidance. RESULTS: A 92% survey response rate revealed large variation in bed availability per 250 000 of SW population: 2.5-18.2. Referrals and admissions per IPU bed per year ranged from 16 to 38.2 (or 39-127 per 100 000 population) and 21.7 (mean), respectively. There was significant workforce variability: 1.3-12.7 nurses per 7.5 hospice beds, 1.2-7.2 consultants per 20 hospice beds, varying multidisciplinary team members with many unfilled posts. National Health Service (NHS) funding ranged from 10% to 75% of total costs. During COVID-19, 4 of 12 hospices reduced bed capacity, while half described increased integration with other teams outside of the hospice. CONCLUSION: There is significant regional variability suggesting inequality in hospice bed availability per 250 000 population. There is also considerable variability in workforce, alongside the proportion of NHS funding. Such variability implies little is known about the optimal IPU model. This provides new meaningful information about the structure and funding of hospices, with further research needed to consider these differences on the impact on patient and family experiences and outcomes. The sustainability and opportunities of integration and collaboration across care settings are also paramount.

Delivery of a national prenatal exome sequencing service in England: a mixed methods study exploring healthcare professionals' views and experiences.

Introduction: In October 2020, rapid prenatal exome sequencing (pES) was introduced into routine National Health Service (NHS) care in England, requiring the coordination of care from specialist genetics, fetal medicine (FM) and laboratory services. This mixed methods study explored the experiences of professionals involved in delivering the pES service during the first 2 years of its delivery in the NHS. Methods: A survey (n = 159) and semi-structured interviews (n = 63) with healthcare professionals, including clinical geneticists, FM specialists, and clinical scientists (interviews only) were used to address: 1) Views on the pES service; 2) Capacity and resources involved in offering pES; 3) Awareness, knowledge, and educational needs; and 4) Ambitions and goals for the future. Results: Overall, professionals were positive about the pES service with 77% rating it as Good or Excellent. A number of benefits were reported, including the increased opportunity for receiving actionable results for parental decision-making, improving equity of access to genomic tests and fostering close relationships between FM and genetics departments. Nonetheless, there was evidence that the shift to offering pES in a clinical setting had brought some challenges, such as additional clinic time, administrative processes, perceived lack of autonomy in decision-making regarding pES eligibility and difficulty engaging with peripheral maternity units. Concerns were also raised about the lack of confidence and gaps in genomics knowledge amongst non-genetics professionals - especially midwives. However, the findings also highlighted value in both FM, obstetric and genetics professionals benefiting from further training with a focus on recognising and managing prenatally diagnosed genetic conditions. Conclusion: Healthcare professionals are enthusiastic about the benefits of pES, and through multi-collaborative working, have developed relationships that have contributed to effective communication across specialisms. Although limitations on resources and variation in knowledge about pES have impacted service delivery, professionals were hopeful that improvements to infrastructure and the upskilling of all professionals involved in the pathway would optimise the benefits of pES for both parents and professionals.

Malnutrition and cachexia are associated with poor CAR T-cell therapy outcomes including survival.

BACKGROUND & AIMS: Chimeric Antigen Receptor (CAR) T-cell therapy has emerged as a revolutionary treatment for patients with refractory or relapsed B-cell malignancies. However, a significant proportion of patients experience negative outcomes, including severe inflammatory toxicities and relapse. Cachexia and malnutrition are known secondary syndromes in many cancer patients, attributed to the effects of active malignancy, systemic inflammation, and cumulative treatment burden; however, further research is required to accurately characterise these issues in CAR T-cell patients. The aims of this service evaluation were to explore the changes in nutritional status (malnutrition and cachexia) in CAR T-cell therapy patients and the potential impact on patient outcomes including survival. Additionally, we describe the utilisation of dietetic resources in this specific patient population in a London tertiary referral centre. METHODS: Adult haematology patients receiving licensed CD19-targeting CAR T-cell therapy at University College London Hospital between 01/04/19 and 01/09/21 were included. Data were collected from the time of treatment consent, and throughout admission to day of discharge: body weight (BW), C-reactive protein, albumin, lactate dehydrogenase, nutrition-risk screening scores (hospital-specific) and dietetic input. Clinical outcomes such as 12-month all-cause mortality, intensive care unit (ICU) admission, high-grade toxicities, and length of hospital stay (LoS) were also recorded. Cachexia and malnutrition were defined using the modified Glasgow Prognostic Score (mGPS) and Global Leadership Initiative on Malnutrition (GLIM) consensus, respectively. RESULTS: 114 patients (55.6 ± 15.1 years; 57% males) with B-cell non-Hodgkin's lymphoma (n = 109) and B-cell acute lymphoblastic leukaemia (n = 5), receiving axicabtagene ciloleucel (n = 89) and tisagenlecleucel (n = 25) were included. Median LoS for treatment was 34 (27-38) days. Prior to treatment, 31.5% of patients developed malnutrition, with pre-cachexia/refractory cachexia (mGPS) identified in 43.6% of patients. This altered nutritional status pre-treatment was significantly associated with adverse patient outcomes post-infusion; mGPS was independently associated with inferior overall survival (HR = 3.158, CI = 1.36-7.323, p = 0.007), with malnutrition and mGPS associated with increased LoS (p = 0.037), sepsis (p = 0.022) and ICU admission (p = 0.039). During admission, patients experienced significant BW loss (-5.6% (-8.8 to -2.4); p=<0.001), with 68.4% developing malnutrition. Malnutrition screening during admission identified 57% patients at-risk, with 66.6% of patients referred to dietetics; however, there was a lack of malnutrition screening and dietetic referrals prior to treatment. CONCLUSION: Pre-treatment malnutrition and cachexia was significantly associated with adverse CAR T patient outcomes, including mGPS cachexia status independently associated with inferior overall survival. Further research in this novel space is essential to confirm the extent and impact of nutritional issues, to assist with implementing dietetic pathways, and to identify potential interventions with a view to optimising outcomes.

Retrospective evaluation of the Complementary Health and Wellbeing (CHW) service delivered at the Christie NHS trust UK.

INTRODUCTION: The Complementary Health and Wellbeing service has been offering integrative therapies to cancer patients at The Christie Hospital NHS Trust since 1997 and has not undergone an external service evaluation in that time. It is considered a pioneering service. METHOD: An external academic was invited to undertake a service evaluation based on information and experiences since the implementation of services changes as the result of the COVID 19 pandemic. Service users and therapists were interviewed along with review of quality control data and documentation. RESULTS: Eighteen staff and eight patients were interviewed showing a high functioning and valuable service, offering a range of services to meet the needs of both inoutpatient and outpatient services. All staff are qualified and passionate, with a significant number of research outputs. However, the service is at capacity, and must rethink some delivery to ensure long term sustainability. Services offered include acupuncture, aromatherapy, massage, talking therapies and motivational behavioural changes. There is a high degree of patient satisfaction as the therapies help them manage their life affecting side effects, however accessing or being aware of the service before treatment commenced was a concern for patients. DISCUSSION: The Complementary Health and Wellbeing Service is well resourced, with all staff paid employees of the NHS trust funded via a charitable part of the trust. There is a self-funding education unit to provide staff training with participants coming from around the world. The therapists are expert practitioners who have undergone specialist training to work in this unique environment, however capacity to meet the needs of the service is limited, and there are gaps in the way patient evaluations are collected, which needs to be addressed for long term viability and future benchmarking. The changes to service to adapt to COVID-19 have become embedded within the service.

"We're one small piece of the puzzle": evaluating the impact of short-term funding for tier two weight management services.

Introduction: Overweight and obesity are a global health epidemic and many attempts have been made to address the rising prevalence. In March 2021 the UK government announced £100 million of additional funding for weight management provisions. Of this, £30.5 million was split across local authorities in England to support the expansion of tier two behavioural weight management services for adults. The present work aimed to explore how this funding was used within the Yorkshire and Humber region to consolidate learning, collate best practice, and provide recommendations for future funding use. Method: One-hour semi-structured interviews were conducted with 11 weight management service commissioners representing 9 of the 15 local authorities in the region. Interviews were recorded, transcribed and analysed using an established health inequality framework. From this, recommendations were co-developed with the commissioner group to establish best practice for future funding use. Results: Commissioners recognised that targeted weight management services were only one small piece of the puzzle for effectively managing obesity. Therefore, recommendations include targeting underserved communities, focussing on early prevention, addressing weight management in a whole systems context, and embracing innovative and holistic approaches to weight management. Discussion: Current short-term funding and restrictive commissioning processes of tier two services prevents sustainable and innovative weight management practice which is detrimental to patients, falls short of addressing health inequalities and negatively impacts staff health and wellbeing.

Post-ICU psychology support during the COVID-19 pandemic.

BACKGROUND: Critical illness survival rates have improved, but patients frequently face prolonged new or worsened physical, cognitive and psychosocial impairments. These difficulties associated with critical care admission are known as post-intensive care syndrome (PICS). AIMS: The multidisciplinary Intensive care Syndrome: Promoting Independence and Return to Employment (InS:PIRE) programme was developed to support patients in the recovery period from critical illness. During the COVID-19 pandemic, the psychology support offered by this service was adapted from an in-person group to individual remote review. This audit evaluated both the extent to which this input aligned with the recommended guidelines and the acceptability of this adapted delivery to this patient group, which could help guide post-pandemic psychology input to the service. STUDY DESIGN: The records of 207 patients were analysed retrospectively. The nature of support offered to a sub-sample of 50 patients detailed in clinical summary letters was compared with the Faculty of Intensive Care Medicine (2019) guidelines. Telephone calls were made to gather feedback on the virtual psychology support from 10 patients. RESULTS: Psychological difficulties were identified by 111 of the 207 patients who attended the virtual clinic. A total of 88 of these patients accepted referral for virtual psychology support and 67 (76%) of those patients attended. The virtual psychology support offered was found to be largely in accordance with ICU aftercare guidance and acceptable to patients. Patients found the summary letters of consultations accurate and helpful. Most patients expressed a preference for in-person support and the opportunity to meet other patients. CONCLUSIONS: The adaptations to the psychology support offered by InS:PIRE during the COVID-19 pandemic were found to be largely in line with ICU aftercare psychology guidelines and were acceptable to patients. Further research is needed on future methods of delivering psychology support for this patient group. RELEVANCE TO CLINICAL PRACTICE: This audit highlights issues important to patients in the post-ICU period based on individual consultations not previously possible. Patient opinion was sought on the impact of changing the delivery of post-ICU psychological support, which will help guide future improvements in the service.

A service evaluation of more than 1 million self-funding adults attending a community weight management programme.

Scaled interventions are required to address levels of overweight and obesity and reduce health inequalities. Little data is available on the effectiveness of community weight management programmes for participants self-selecting to attend across different socio-economic backgrounds. This analysis investigates 3, 6, and 12-month outcomes of adults joining a real-life community weight management programme. Weight, attendance and Indices of Multiple Deprivation (IMD) data from all fee-paying adults joining Slimming World in 2016 were collated. Data were analysed using descriptive and inferential statistics to determine predictors of weight loss. Mean BMI of 1 094 676 adults (7.6% male) was 33.0 ± 6.4 kg/m2. Mean % weight change at 3, 6, and 12 months was -5.0% ± 3.6%, -5.9% ± 5.2%, and -6.0% ± 5.8%. Those attending 75% sessions achieved greater weight loss with mean weight losses at 3, 6, and 12-months of 7.7% ± 3.3%, 11.3% ± 5.2%, and 14.1% ± 7.5%, respectively. Effect sizes from comparison of weight change between deprivation deciles were negligible, with similar outcomes in the most and least deprived deciles at 12-months (-5.7% ± 5.9% vs. -6.2% ± 5.9%). This service evaluation of more than 1 million adults attending a community weight management programme found they were able to achieve and/or maintain an average 6% weight loss at 12 months, with high attenders achieving >14% loss. Men and those with higher levels of deprivation were accessing the support and achieving significant weight losses. Slimming World as a real-life, scalable weight management programme is well placed to help adults manage their weight and address health inequalities.

Opportunities and challenges of integrating artificial intelligence in China's elderly care services.

The challenge of elderly care presents a formidable task, demanding the collective attention of governmental bodies and diverse sectors of society. The integration of Artificial Intelligence (AI) into the research and development of Social Elderly Care Service (ECS) has emerged as a dominant trend, holding substantial importance in the establishment of an efficient ECS system. This study aims to serve as a comprehensive reference for the advancement of China's ECS system, achieved through the harmonious integration of a social ECS system with AI capabilities. This paper introduces the fundamental theory of AI, delving into the intricacies of the greyscale model of AI. Furthermore, it provides an overview of the current landscape of elderly care and elder care institutions, offering scientific data and insights to propel further research on AI development and system construction. Through an analysis of the existing research status, the study identifies prevalent issues within the AI-ECS integration, emphasizing pivotal factors influencing the construction of a robust social ECS system. To address these concerns, the study puts forth specific and viable policy recommendations. Notably, the questionnaire's statistics underscore that 83% of the elderly populace would opt for AI-driven solutions in selecting intelligent products, thereby underscoring the pivotal role of AI within the social ECS system. The challenges facing elderly care systems, including demographic shifts, resource constraints, and evolving societal norms, demand innovative solutions for providing efficient and effective care. This study addresses these challenges by exploring the integration of Artificial Intelligence (AI) into Social Elderly Care Services (ECS) in China. By delving into the theory of AI and assessing the existing research status, the study identifies key issues in AI-ECS integration and proposes viable policy recommendations. Insights from stakeholder surveys further highlight the importance of AI-driven solutions in meeting the needs of the elderly population.

Shared manufacturing service evaluation based on intuitionistic fuzzy VIKOR.

With the rise of the concept of sharing economy, the shared manufacturing model has gained widespread attention. The VIKOR shared manufacturing service evaluation approach is presented based on an intuitionistic fuzzy environment, which enables users to filter out acceptable shared manufacturing services from a wide pool of shared manufacturing services with similar functional qualities. Firstly, considering the QOS multi-indicator comprehensive evaluation of services by multiple stakeholders under the fundamental characteristics of shared manufacturing, the QOS evaluation index system is built from the two aspects of online and offline, which includes 2 first-level indicators and 10 second-level indicators. The paper also constructs a service recommendation model considering supply and demand constraints. Secondly, the intuitionistic fuzzy numbers are introduced to define the non-quantitative indexes, and the G1-method and variable-precision rough set theory are used for the assignment, and the maximum entropy theory is utilized to integrate the assignment method to obtain the combination weights. Thirdly, the VIKOR method based on intuitionistic fuzzy sets is used to evaluate and rank the shared manufacturing candidate services, in which the combined benefits and minimum regret values of the groups are solved based on the intuitionistic fuzzy number similarity. Finally, the reliability and feasibility of the algorithm are verified with a real case.

Molecular autopsy for fetal structural anomaly: diagnostic and clinical utility of multidisciplinary team approach.

OBJECTIVE: In the West Midlands regional genetics service, cases of perinatal death with a possible genetic diagnosis are evaluated by the perinatal pathology genetic multidisciplinary team (MDT). The MDT assesses autopsy findings and suggests appropriate genomic assessment. The objective of this retrospective service evaluation was to determine the clinical utility of the MDT in assessing perinatal deaths associated with structural anomaly. This is the first evaluation since the introduction of whole-genome and whole-exome sequencing in routine clinical care. METHODS: This was a retrospective service evaluation including all cases of perinatal death with an associated structural anomaly and suspected genetic etiology that underwent perinatal MDT assessment between January and December 2021. All cases received a full or partial postmortem examination and at least a chromosomal microarray analysis. Demographic characteristics, phenotype, genotype, MDT recommendations, diagnoses, outcomes and impact of postmortem analysis and genetic testing data were collected from patient case notes. RESULTS: Overall, 123 cases were discussed at the MDT meetings in 2021. Genetic evaluation was recommended in 84 cases and accepted in 64 cases. A range of genetic tests were requested according to indication and availability. Thirty diagnoses were made in 29 cases from 26 unrelated families. The diagnostic yield was 24% (29/123) in all cases or 45% (29/64) in cases with a suspected genetic diagnosis who underwent genetic testing. Postmortem examination provided clinically actionable phenotypic data in 79% of cases. A genetic diagnosis enabled accurate recurrence risk counseling and provision of appropriate follow-up, including prenatal testing and preimplantation diagnosis for patients with inherited conditions. CONCLUSIONS: Genomic testing was a clinically useful addition to (but not a substitute for) postmortem examination in cases of perinatal death associated with structural anomaly. The MDT approach helped assess cases and plan appropriate follow-up. Expedited whole-genome sequencing or panel-agnostic analysis were most appropriate for heterogeneous presentations. This broad approach can also expand knowledge of prenatal phenotypes and detect novel disease genes, and should be a priority in future research. © 2024 International Society of Ultrasound in Obstetrics and Gynecology.

New quality outcome indicators for bone metastases: expert consensus analysis of patients, their families and specialist healthcare professionals.

OBJECTIVES: As workload increases, surgical care for patients with bone metastases is increasingly decentralised, with a shift in management away from primary bone tumour units to local centres. We must ensure that patients have similar outcomes regardless of where they receive their treatment. The aim was to develop and validate a set of quality outcome indicators (QOIs) to evaluate treatment success for patients undergoing surgery for bone metastases. METHODS: Outcome recommendations were adapted from the literature and field tested in a retrospective patient cohort to determine feasibility. The provisional outcome indicators were assessed during a modified RAND/Delphi consensus process by a group of patients, relatives and healthcare professionals with validated targets added. RESULTS: 1534 articles were reviewed. 38 quality objectives were extracted and assessed for feasibility using clinical records for 117 patients. 28 provisional outcome indicators proceeded to expert consensus and were reviewed by a group of 22 panellists including 10 patients and 4 relatives/carers. After two rounds, 15 QOIs were generated, with validated targets based on expert consensus. These included specific statements such as 'surgery improves pain and reduces the need for morphine, target: at follow-up, pain is documented in 80% of individuals and 50% of these have reduced need for morphine'. CONCLUSIONS: The published evidence and guidelines were adapted into a set of outcome indicators validated by patients, their family/carers and healthcare professionals. These can be used to compare care between centres and identify units of excellence in maximising good outcome after surgery for bone metastases.

Reducing inequalities by supporting individuals to make informed decisions about accepting their breast screening invitations.

OBJECTIVES: Individuals from deprived areas are less likely to attend breast screening. Inequalities in the coverage of breast screening are associated with poorer cancer outcomes. Individuals who have a positive first experience are more likely to attend subsequent mammograms. This work evaluates the provision of an additional telephone call to individuals who have never attended breast screening, to establish whether this increases attendance. SETTING AND METHODS: 1423 patients from four general practitioner practices within socially deprived areas of National Health Service Tayside (UK) comprised the study population. In addition to their standard appointment letter, individuals were to receive a call at least 24 h prior to their appointment. The call identified barriers to screening, and offered a supportive, problem-solving approach to overcoming these barriers. Data collected included: age, Scottish Index of Multiple Deprivation, first-time invite or previous non-attender, if contactable, duration of call, number of days prior to appointment, and confirmation appointment letter was received. The primary outcome was attendance at the screening. RESULTS: Contact by phone was made with 678 (47.6%) of the study population. Of those, 483 (71.2%) attended their appointment, 122 (18%) cancelled and 73 (10.8%) did not attend (DNA), versus 344 (46.2%) attending, 34 (4.6%) cancelling and 367 (49.3%) not attending among those who were not able to be contacted. Those who received a call were more likely to attend their appointment and less likely to DNA compared to individuals not receiving the call. CONCLUSION: The intervention is simple and low cost; results indicate that the additional call may increase attendance and reduce DNA appointments at breast screening.