Research Register Research Articles

Navigation of video-assisted thoracoscopic surgery using electromagnetic versus CT-guided localization (NOVEL): a study protocol for comparing procedural success and complication rates in a prospective, multicenter, randomized controlled, non-inferiority phase III trial.

The rise of low-dose computed tomography (LDCT) has increased the detection of small pulmonary nodules, demanding more effective localization techniques for their resection. Minimally invasive resection utilizing video-assisted thoracoscopic surgery (VATS) is a critical method for treating these nodules. However, traditional computed tomography (CT)-guided localization has limitations such as invasiveness and patient discomfort. The current gap in knowledge relates to the potential advantages of electromagnetic navigation bronchoscopy (ENB) in reducing complications and improving procedural efficiency. The NOVEL trial evaluates the non-inferiority of ENB-guided labeling against CT-guided puncture for lung nodule localization. This multicenter, randomized, controlled, non-inferiority phase III trial includes 156 participants across four Chinese hospitals, randomized to undergo either ENB-guided or CT-guided localization prior to VATS sub-lobar resection. Randomization is performed using sealed opaque envelopes to ensure allocation concealment. Primary outcomes are the procedural success rates and complication rates of both techniques, with secondary outcomes including procedure times and lesion margins. The NOVEL trial aims to provide a detailed comparison of ENB-guided versus CT-guided localization for small pulmonary nodules. Establishing the safety and efficacy of the ENB method could significantly influence clinical practices and improve patient outcomes. This trial was registered with the Medical Research Registration Platform (https://www.medicalresearch.org.cn), registration number MR-31-24-018575.

Pulp calcification identification on cone beam computed tomography: an artificial intelligence pilot study

BackgroundThis study aims to verify the effectiveness of a deep neural network (DNN) in automatically identifying pulp calcification on cone beam computed tomography (CBCT) images.MethodsThis study retrospectively analysed 150 CBCT images. Pulp calcification was identified and manually annotated by three endodontists with 10 years of experience. A DNN model based on the U-Net architecture was constructed to identify pulp calcification, and ten rounds of fourfold cross-validation were conducted. The model performance was evaluated using sensitivity, specificity, accuracy, and the area under the receiver operating characteristic curve (AUC).ResultsThe model achieved a sensitivity of 75.91 ± 2.84% in automatically identifying pulp calcification, with a specificity of 68.88 ± 2.35%, an accuracy of 72.78 ± 2.13%, and an AUC of 73.68 ± 3.09%. According to the ranking for diagnostic tests, the proposed method achieved a “good” grade for sensitivity, accuracy, and AUC and a “fair” grade for specificity.ConclusionsThe results indicate that the proposed method shows promise for identifying pulp calcification on CBCT images. Future research aims to expand the dataset and refine the model, thereby enhancing its clinical applicability. The integration of artificial intelligence into diagnostic and treatment systems is anticipated to increase the efficiency of diagnosing pulp calcification and assist dentists in assessing the difficulty of root canal treatment cases preoperatively.Clinical registrationRegistration was performed on the Chinese Clinical Trial Registry (https://www.chictr.org.cn/) (Registration number: ChiCTR2300077078, 27/10/2023) and National Medical Research Registry Information System (https://www.medicalresearch.org.cn/, 30/10/2023) (Number: MR-44–23-039664).

Abstract B002: Cancer health equity and research advocacy program among immigrant communities

Abstract Introduction: In an effort to ensure an all-inclusive initiative that would close the disparity gap among the immigrant communities in Florida, we developed a pilot project under the Inclusive Cancer Care Research Equity (iCCaRE) for Black Men Consortium with generous support from the Mayo Clinic Comprehensive Cancer Center (MCCCC). The objective is to train cancer advocates to engage their communities and develop and implement cancer prevention and screening navigation programs. The central hypothesis for this program is that community-driven cancer advocacy will significantly improve cancer awareness, knowledge, prevention, risk reduction, screening uptake, and early detection among Black immigrants. Methods: We collaborated with immigrant communities’ leaders to brainstorm on the current state of healthcare access and disparities experienced by Black immigrants and to set program and research priorities through listening sessions. Cancer advocates were trained to engage their communities to (1) develop and implement cancer risk reduction and education programs using train-the-trainer approach, (2) mobilize the resources within the community for cancer health promotion, prevention, and screening strategies, (3) partner with key stakeholders to accomplish targeted objectives; (4) raise funds to support advocacy activities; and (5) develop and successfully organize community-centered programs. Results: We are currently working with 10 Black immigrant organizations, including immigrant churches across different ethnicities, including Nigeria, Ghana, Cameroon, Liberia, South Africa, Haiti, Jamaica, and across different cities in the United States. Eighteen community cancer advocates, including breast and prostate cancer survivors, caregivers, and community influencers, were trained to engage the immigrant communities in cancer risk reduction and research in Florida using multiple channels, including in-person community programs and online engagement approaches. We have engaged 720 immigrants in cancer risk reduction education and the need to participate in research during advocate-led in-person community outreaches. We currently have 26 immigrants who have volunteered in the Mayo Clinic Community Research Registry. The program is ongoing, and we anticipate that more than 750 will be engaged, and 100 will volunteer to be registered in the Mayo Clinic Community Research Registry. Conclusion: Advocate-led advocacy in immigrant communities will provide evidence for compelling arguments about the feasibility and availability of the Black immigrant population for robust and sustainable research and program engagements to eliminate disparity and advance cancer health equity. Citation Format: Opeyemi O. Bolajoko, Caleb Ramirez, Shannon Pressey, Noreen A. Stephenson, Vinessa A. Gordon, Binta Onyibe, Kingsley Efe, Austin Okaiwele, Mubo Oloruntobo, Brittany M. Norris, Folakemi T. Odedina. Cancer health equity and research advocacy program among immigrant communities [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B002.

Educational differences in years lived with disability due to mental and substance use disorders: a cohort study using nationwide Norwegian and Danish registries

BackgroundFindings from the Global Burden of Disease (GBD) study have shown that the burden of mental and substance use disorders is considerable, and unevenly distributed across demographic groups in the population. However, there is a lack of knowledge on how this burden differs by socioeconomic position. The aim of this study was to examine educational differences in years lived with disability (YLDs) from mental and substance use disorders among males and females in two high-income countries, taking comorbidity with other diseases into account.MethodsThe study included all registered residents in Denmark and Norway from 2011 to 2021. Diagnostic information was retrieved from records in the Norwegian National Patient Registry (NPR) and the Danish Psychiatric Central Research Register (PCRR) and used as proxy measures for disorder prevalence. Demographical and educational information was taken from administrative registries. The YLD is a measure of the non-fatal health loss in the population and was calculated by multiplying the duration of a disorder with a disability weight (DW), scaled between 0 and 1. Information on remission and DWs were retrieved from the GBD study and other sources, and disorder specific DWs were averaged by severity levels and adjusted for comorbidity.ResultsEducational gradients in YLD rates were found for mental and substance disorders overall, and for most of the specific disorders. The educational gradient was more pronounced for schizophrenia, intellectual disability and substance use disorders than for eating, anxiety, and affective disorders. Both higher YLD rates, and a larger attributed proportion of the total YLDs, were found for schizophrenia, intellectual disability, and substance use disorders in the groups with low versus high education. YLD rates for eating, anxiety, and affective disorders were more equal across educational levels, but constituted a smaller proportion of the total YLDs among the groups with low versus the groups with high educational level.ConclusionMost of the disease burden related to mental and substance use disorders falls on those with the fewest years of education. This should be taken into consideration when public health targets aimed at improving mental health and reducing social inequalities in health are developed and implemented.

Female Infertility and Neurodevelopmental Disorders in Children: associations and evidence for familial confounding in Denmark.

Existing research suggests the impact of infertility on the risk of neurodevelopmental disorders in children, however, studies to date have failed to separate the impact of male and female infertility, often blurring the lines with proxies that encompass all forms of infertility. Moreover, while both health conditions co-occurring with infertility and genetic factors operating upstream have been suggested to influence the association between infertility and child outcomes, their roles and potential impact on observed associations remain unclear. The objectives of this study are to investigate the relationship between female infertility and autism in the child, differentiating it from the effects of male and the couple infertility; consider the role of various maternal and birth factors in the association; and examine the effects of shared familial confounders on the association. Danish population-based cohort study, including all singleton live births in Denmark 1998-2015, their parents and parents' siblings. The cohort was followed up until December 31, 2016. The exposure was a history of female infertility in the mother and the mother's sister. We examined four definitions of female infertility based on the ICD-10 codes derived from the Danish National Patient Register - any female infertility; specified female infertility; female exclusive infertility; and female or male infertility. The outcome was diagnosis of autism spectrum disorder (ASD) in the Danish Psychiatric Central Research Register or the national patient register. A multivariable Cox regression model was used to estimate the associations between female infertility and autism, accounting for child's sex, year of birth, maternal age, education level, chronic comorbidities, and pregnancy and birth complications. The effects of shared familial factors on the association were analyzed using exposure information from the child's maternal aunt. The cohort included 1,131,899 mother-child pairs, among which 18,374 children with ASD diagnosis. History of female infertility in the mother (all definitions) was significantly associated with autism in the child, with the association remaining robust after adjustment for covariates (HRadj=1.14 (95% CI, 1.03-1.26) for specified infertility). The diagnosis of infertility in a child's maternal aunt was also significantly linked to the child's autism risk, even after adjustment for maternal infertility (HRadj=1.10 (95% CI, 1.00-1.20). in This population-based birth cohort study, we found a slightly higher risk of autism in children born to mothers with a history of infertility, with the association remaining consistent across various definitions of female infertility and robust to adjustments for demographic, child, and maternal factors. The study suggests for the first time that shared familial factors, possibly both genetic and non-genetic, could be influencing both female infertility and the risk of autism in children, indicating a need for further investigation into these familial effects.

Systematic review and meta-analysis of the association between gallstones and cholecystectomy with liver cancer

Introduction: Cholelithiasis and related treatments are associated with several gastrointestinal cancers. Thus, the present systematic review and meta-analysis aimed to investigate the relationship between cholelithiasis and cholecystectomy with the risk of liver cancer. Materials and Methods: The present study is a systematic review and meta-analysis conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). We performed a search on the databases of Web of Science, Cochrane, ProQuest, PubMed, and Google Scholar until January 21, 2024. Moreover, the statistical analysis was performed using the STATA 14, and the significance level was set at P<0.05. Results: The present meta-analysis included 15 studies with a total sample size of 1426704 participants. According to our results, a significant association between cholelithiasis and liver cancer (OR: 1.76, 95% CI: 1.52, 2.03), as well as cholecystectomy and liver cancer (OR: 1.55, 95% CI: 1.29, 1.87) were detected. Moreover, the relationship between cholelithiasis and liver cancer was significant in cohort studies (OR: 1.76, 95% CI: 1.51, 2.04) and insignificant in case-control studies (OR: 1.69, 95% CI: 0.86). However, there was a significant relationship between cholecystectomy and liver cancer in both the cohort (OR: 1.62, 95% CI: 1.29, 2.04) and case-control studies (OR: 1.26, 95% CI: 1.12, 1.41). Conclusion: In conclusion, cholelithiasis and cholecystectomy increased the risk of liver cancer by 76% and 55%, respectively. Thus, they can be considered as risk factors for liver cancer. Registration: This study has been compiled based on the PRISMA checklist, and its protocol was registered on the PROSPERO (ID: CRD42024508640) and Research Registry (UIN: reviewregistry1787) website.

Meta-analysis of bone mineral density in adults with phenylketonuria

BackgroundLifelong management of phenylketonuria (PKU) centers on medical nutrition therapy, including dietary phenylalanine (Phe) restriction in addition to Phe-free or low-Phe medical foods/protein substitutes. Studies have reported low bone mineral density (BMD) in mixed-age PKU populations, possibly related to long-term Phe restriction. Therefore, a meta-analysis investigating BMD specifically in adults with PKU was conducted.MethodsStudies reporting BMD-related outcomes were identified from a systematic literature review evaluating somatic comorbidities experienced by adults with PKU on a Phe-restricted diet (searched February 1, 2022, updated November 1, 2023). Risk of study bias was assessed (Scottish Intercollegiate Guidelines Network checklists). The primary outcome of the meta-analysis was pooled mean BMD Z-scores of different bones. Secondary outcomes were the prevalence of low BMD Z-scores at pre-specified thresholds. Subgroup analyses of mean BMD Z-scores (decade of study publication, controlled versus uncontrolled blood Phe levels, gender) were conducted.ResultsBMD-related data from 4097 individuals across 10 studies rated as at least acceptable quality were included. Mean BMD Z-scores were statistically significantly lower compared with an age-matched control or reference (non-PKU) population, across bones, but still within the expected range for age (> -2.0): lumbar spine (seven studies, n = 304), -0.63 (95% confidence interval (CI): -0.74, -0.52); femoral neck (four studies, n = 170), -0.74 (95% CI: -1.25, -0.22); radius (three studies, n = 114), -0.77 (95% CI: -1.21, -0.32); total body (four studies, n = 157), -0.61 (95% CI: -0.77, -0.45). The small number of observations in the subgroup analyses resulted in a high degree of uncertainty, limiting interpretation. Estimated prevalence of BMD Z-scores ≤ -2.0 was 8% (95% CI: 5%, 13%; four studies, n = 221) and < -1.0 was 42% (95% CI: 35%, 51%; five studies, n = 144).ConclusionsAdults with PKU had lower BMD Z-scores than the reference (non-PKU) population but < 1 in 10 were below the expected range for age. The low number of studies prevents identification of which population characteristics are most impacting BMD.This meta-analysis was supported by BioMarin Pharmaceutical Inc., Novato, CA and is registered with the Research Registry (reviewregistry1476).

Investigating innovations in outpatient services: a mixed-methods rapid evaluation.

Within outpatient services, a broad range of innovations are being pursued to better manage care and reduce unnecessary appointments. One of the least-studied innovations is Patient-Initiated Follow-Up, which allows patients to book appointments if and when they need them, rather than follow a standard schedule. To use routine national hospital data to identify innovations in outpatient services implemented, in recent years, within the National Health Service in England. To carry out a rapid mixed-methods evaluation of the implementation and impact of Patient-Initiated Follow-Up. The project was carried out in four sequential workstreams: (1) a rapid scoping review of outpatient innovations; (2) the application of indicator saturation methodology for scanning national patient-level data to identify potentially successful local interventions; (3) interviews with hospitals identified in workstream 2; and (4) a rapid mixed-methods evaluation of Patient-Initiated Follow-Up. The evaluation of Patient-Initiated Follow-Up comprised an evidence review, interviews with 36 clinical and operational staff at 5 National Health Service acute trusts, a workshop with staff from 13 National Health Service acute trusts, interviews with four patients, analysis of national and local data, and development of an evaluation guide. Using indicator saturation, we identified nine services with notable changes in follow-up to first attendance ratios. Of three sites interviewed, two queried the data findings and one attributed the change to a clinical assessment service. Models of Patient-Initiated Follow-Up varied widely between hospital and clinical specialty, with a significant degree of variation in the approach to patient selection, patient monitoring and discharge. The success of implementation was dependent on several factors, for example, clinical condition, staff capacity and information technology systems. From the analysis of national data, we found evidence of an association between greater use of Patient-Initiated Follow-Up and a lower frequency of outpatient attendance within 15 out of 29 specialties and higher frequency of outpatient attendance within 7 specialties. Four specialties had less frequent emergency department visits associated with increasing Patient-Initiated Follow-Up rates. Patient-Initiated Follow-Up was viewed by staff and the few patients we interviewed as a positive intervention, although there was varied impact on individual staff roles and workload. It is important that sites and services undertake their own evaluations of Patient-Initiated Follow-Up. To this end we have developed an evaluation guide to support trusts with data collection and methods. The Patient-Initiated Follow-Up evaluation was affected by a lack of patient-level data showing who is on a Patient-Initiated Follow-Up pathway. Engagement with local services was also challenging, given the pressures facing sites and staff. Patient recruitment was low, which affected the ability to understand experiences of patients directly. The study provides useful insights into the evolving national outpatient transformation policy and for local practice. Patient-Initiated Follow-Up is often perceived as a positive intervention for staff and patients, but the impact on individual outcomes, health inequalities, wider patient experience, workload and capacity is still uncertain. Further research should include patient-level analysis to determine clinical outcomes for individual patients on Patient-Initiated Follow-Up and health inequalities, and more extensive investigation of patient experiences. This study is registered with the Research Registry (UIN: researchregistry8864). This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 16/138/17) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 38. See the NIHR Funding and Awards website for further award information.

A systematic review and meta-analysis of the association between selenium and osteoarthritis

Introduction: Osteoarthritis is an inflammatory disorder and the most common human joint disease. Considering the anti-inflammatory properties of selenium, we aimed to investigate the relationship between selenium and the risk of osteoarthritis in this study. Materials and Methods: The present study was a systematic review and meta-analysis based on the PRISMA guidelines, conducted in databases including Web of Science, Cochrane, ProQuest, PubMed, and Google Scholar Search Engine for articles published until December 12, 2023. Data was analyzed using STATA 14 software, and tests with p-values lower than 0.05 were considered statistically significant. Results: Seven cross-sectional studies with 412998 participants were combined, and results indicated that selenium intake increased the risk of osteoarthritis (OR: 1.26; 95% CI: 1.06, 1.49). However, the risk of osteoarthritis in individuals with low, moderate, and high serum selenium levels was (OR: 1.03; 95% CI: 0.81, 1.31), (OR: 0.97; 95% CI: 0.83, 1.13), and (OR: 0.99; 95% CI: 0.99, 1), respectively. The relationship between serum selenium level and the risk of osteoarthritis in male and female patients were also (OR: 0.99; 95% CI: 0.98, 0.99) and (OR: 0.99; 95% CI: 0.98, 0.99), respectively. Findings showed the relationship between serum selenium level and knee (OR: 1.11; 95% CI: 0.89, 1.38) and hip (OR: 1.23; 95% CI: 0.86, 1.77) osteoarthritis. Conclusion: Selenium intake increased the risk of osteoarthritis by 26%. However, there was no statistically significant relationship between the serum selenium level and the risk of osteoarthritis. Considering the limited number of reviewed studies, further studies in this field are required. Registration: This study has been compiled based on the PRISMA checklist, and its protocol was registered on the PROSPERO (ID: CRD42023494294) and Research Registry (UIN: reviewregistry1762) website.

Endoscopic resection of benign breast tumors via a single axillary incision using the insufflation method: a preliminary summary report.

Clinicopathological data from 62 patients who underwent this procedure from June 2022 to July 2023 were retrospectively collected. The surgical success rate, number of tumors excised, operative time, intraoperative conditions, postoperative complications, and clinical outcomes were analyzed. A total of 144 benign tumors were resected, and the surgical success rate was 100% (62/62). The time required to resect tumors located in the inner quadrant with larger diameters was shorter than the time to resect tumors located in the outer quadrant with smaller tumors. Sixty-two patients experienced reduced intraoperative bleeding and did not experience skin burns, incision infections, or poor healing. However, all patients experienced varying degrees of subcutaneous emphysema during the postoperative period. Fourteen patients experienced minor local effusions, and 3 patients experienced mild upper limb dysfunction, which resolved within one month. During the six-month follow-up period, there were no cases of tumor recurrence or new tumors. The ABNSW score was above 14 points, and patient satisfaction was high. Endoscopic resection of benign breast tumors through a single incision in the axilla via the inflatable method could quickly remove lesions larger than 3.0cm. This method also results in hidden scars and good cosmetic effects on the shape of the breast. This is a new and effective treatment for benign breast tumors. This retrospective study was registered in the National Medical Research Registry filing system ( https://www.medicalresearch.org.cn ) (No. MR-44-22-007981) and recorded in the Medical Research Division of our hospital (No. NYXJS-22-021).

A rapid review of telehealth in women with recent de novo hypertensive disease of pregnancy.

Hypertensive disorders of pregnancy pose significant risks to both maternal and fetal health. Postpartum hypertension, a common complication, often leads to emergency room (ER) visits or hospital readmissions. Despite the prevalence of these complications, there is a paucity of studies that focus on blood pressure monitoring in postpartum patients with de novo hypertensive disorders of pregnancy. This review aimed to address the gap by evaluating available evidence to compare telehealth monitoring with in-person visits in preventing ER visits and hospital readmissions among postpartum patients with de novo hypertensive disorders of pregnancy. The study identified relevant studies by conducting a rigorous search strategy (Medline/OVID, the Cochrane Library, Scopus, and research registries such as the International Clinical Trials Registry Platform [ICTRP] and clinical trials) directed by the clinical information specialist. Two reviewers independently screened titles and abstracts, resolving discrepancies with the assistance of a third reviewer. Data extraction followed standardized protocols, and risk of bias assessments were conducted using appropriate tools. This rapid review synthesized evidence from 11 studies on telehealth for women with recent de novo hypertensive disorders of pregnancy. Findings highlighted that telemonitoring led to earlier blood pressure documentation and intervention, reduced disparities in blood pressure measurement, decreased hypertension-related readmissions, higher rates of postpartum antihypertensive treatment initiation, and increased patient satisfaction. Telehealth emerges as a promising tool for managing postpartum hypertension among women with recent de novo hypertensive disorders of pregnancy.

Exploring the impact of pediatric OCD on family impairment: A consideration of parent, sibling, and affected-child perspectives

BackgroundPrevious studies have examined the perspectives of both affected children/adolescents and their parents on family functioning impacts of obsessive-compulsive disorder (OCD). While siblings play an integral role within the family system, their perspectives have been largely overlooked in the literature. This study examined sibling, parent, and child perspectives of family functioning in pediatric OCD and assessed demographic and clinical factors associated with family functioning. MethodsParticipating families were identified from a larger research registry of 398 patients referred between 2012 and 2020 to the Provincial OCD Program. A total of 185 families who provided data on family functioning from the perspectives of OCD-affected children, siblings and parents were included for study. All family members completed the OCD Family Functioning scale. ResultsThe extent of perceived impairment differed by family member type, with parents reporting the greatest impacts, followed by OCD-affected children, and then siblings. Predictors of OCD-imposed family dysfunction included family accommodation from all perspectives, clinician-reported child OCD severity, and family blame from parent perspectives. LimitationsData are cross-sectional, and we cannot conclude that the observed associations reflect causal effects. Missing data were evident and differed by variable item and family member type. ConclusionsBy providing sibling perspectives within the same family unit, this study expands upon previous findings that accommodation predicts family impairment from parent and child perspectives. Our study highlights factors relevant to family-based interventions in the treatment of pediatric OCD. Clinicians should be aware of the ongoing impacts OCD has on all family members.

Costs of Health Registries: An Exploration for Health Services Research.

Health registries are an established methodology in health services research. Regarded as cheap bidder for observation studies in earlier times, many registries now benefit from an appropriate funding. However, reference figures for costs of registries in health services research are missing. Based on literature data as well as figures from a German funding initiative, the relationship between costs per newly recruited case and the annual sample size was analyzed. One can assume that a standard multicenter registry in health services research with 1,000 new patients each year will be appropriately financed with 1.1 to 2.2 million Euro in a period of five years. So smaller the sample size, so higher the costs for a newly recruited patient. The cost model of health registries should be further elaborated taking into account specifics of individual registries and differences in the level of case money.

Communication and Counseling Preferences of Women Who Chose Abortion During Adolescence: A Qualitative Study

Study ObjectiveAs part of a larger study about pregnancy options counseling with adolescents, we interviewed women in the United States who chose abortion during adolescence about preferences and experiences regarding communication from healthcare professionals during abortion care. Design, Setting, and ParticipantsWe conducted individual semi-structured interviews with women ages 18-35 years old who were pregnant before age 20 years old and chose abortion. We recruited participants through social media, a research registry, and flyers in healthcare facilities. We recorded and transcribed interviews. Two investigators coded interview transcripts using thematic analysis. ResultsWe conducted interviews with 17 US women (median age 32 years old, range 20-35 years old) from 11/2020-4/2021. The median age at time of abortion was 18 years old (range 14-19 years). The sample was 58% (n = 10) Caucasian and 65% (n = 11) heterosexual. Themes included: 1) Participants perceived options counseling before abortion as important and necessary but did not always feel they personally needed it. 2) Participants reported that clinicians including nurses, physicians, and other staff sometimes had poor bedside manner, which was not aligned with their perceived need for gentleness due to their adolescence. 3) Participants valued nonjudgmental communication including normalization of abortion care. 4) Participants desired privacy and confidentiality throughout their clinic appointment, but clinic logistics led to concerns about limited privacy. 5) Participants appreciated medically accurate information about abortion in plain language balancing safety and risk information for reducing fear before the procedure. ConclusionResponses suggested specific best practices that healthcare providers can adopt to improve care for youth considering abortion.

Insights from a 10-year Australasian idiopathic hypersomnia patient data registry study.

Idiopathic hypersomnia (IH) is a disorder of central hypersomnolence that results in excessive daytime sleepiness in the absence of another identifying cause. Case studies from sleep clinic patients may not be a fair representation of the wider IH population. This study aims to better characterize patients diagnosed with IH in Australia and New Zealand using online patient-driven survey data. A retrospective analysis of 686 participants from the Hypersomnolence Australia Patient Data Registry diagnosed with either IH (n = 554), narcolepsy type 1 (NT1, n = 54) or narcolepsy type 2 (NT2, n = 78) between January 2013 and October 2022 was performed. Participants with IH reported additional sleep disorders such as OSA (16.4%) and restless legs syndrome (7.9%) and notable comorbidities included depression (46.2%) and anxiety (50%). There was a mean delay in diagnosis of 10 years in participants with IH, when compared to symptom onset. IH presents with unique but also overlapping symptomatology with NT2, with similar reporting of long daytime naps, unrefreshed sleep and automatic behavior. Modafinil was the most common medication (45.5%) used by participants with IH followed by dexamphetamine (44.2%). Most participants with IH reported receiving physician advice regarding positive lifestyle changes but recommend that newly diagnosed patients be given more advice about medication use. This study demonstrates a delay in IH diagnosis when compared to symptom onset and overlapping features of IH and NT2. It also highlights the heterogeneous presentation of IH and the value of large patient registries in future research.

Suicide Attempt and Suicide Death Among Spouses of Patients With Cancer

Little is known about the risk of suicidal behavior in relation to having a spouse with a cancer diagnosis. To estimate the risk of suicide attempt and suicide death among spouses of patients with cancer. This nationwide cohort study in Denmark collected registry-based data from 1986 through 2016. Analyses were performed from August 8, 2022, to October 30, 2023. Individuals who had a spouse with a cancer diagnosed during 1986 to 2015 were compared with individuals whose spouse did not have a cancer diagnosis during the same period, randomly selected from the general population and matched by birth year and sex. Having a spouse with a cancer diagnosis. Suicide attempt was identified through the Danish National Patient Register and the Danish Psychiatric Central Research Register, whereas suicide death was identified through the Danish Causes of Death Register, through 2016. Flexible parametric and Cox proportional hazards models were used to estimate hazard ratios (HRs) and 95% CIs for suicide attempt and suicide death among spouses of patients with a cancer diagnosis. The study included 409 338 exposed individuals and 2 046 682 unexposed individuals (median [IQR] age at cohort entry for both groups, 63 [54-70] years; 55.4% women). During the follow-up, 2714 incident cases of suicide attempt among exposed individuals (incidence rate [IR], 62.6 per 100 000 person-years) and 9994 among unexposed individuals (IR, 50.5 per 100 000 person-years) were identified, as well as 711 cases of suicide death among the exposed individuals (IR, 16.3 per 100 000 person-years) and 2270 among the unexposed individuals (IR, 11.4 per 100 000 person-years). An increased risk of suicide attempt (HR, 1.28; 95% CI, 1.23-1.34) and suicide death (HR, 1.47; 95% CI, 1.35-1.60) was observed among spouses of patients with cancer throughout the follow-up. The increased risk was particularly notable during the first year after the cancer diagnosis, with an HR of 1.45 (95% CI, 1.27-1.66) for suicide attempt and 2.56 (95% CI, 2.03-3.22) for suicide death. There was a greater risk increase for both suicide attempt and suicide death when the cancer was diagnosed at an advanced stage or when the spouse died after the cancer diagnosis. These findings suggest a need for clinical and societal awareness to prevent suicidal behaviors among spouses of patients with cancer, particularly during the first year following the cancer diagnosis.

Improving the integration of care for trans adults: ICTA a mixed-methods study.

This research concerns improving the National Health Service health services trans adults need. These include the national specialist Gender Identity Clinics that support people making a medical transition. Not all trans people need to make a medical transition, and transition can take many different paths. Waits to be seen by Gender Identity Clinics are, however, several years long, and there may be significant problems of co-ordination between different aspects of transition-related care, and between transition-related care and general health care. The main objectives were to understand: Which factors make services more or less accessible and acceptable to the variety of trans adults? How initiatives for providing more person-centred and integrated care can be successfully implemented and further improved? An online and paper screening survey was used to gather data on demographics and service use of trans people across the United Kingdom, with 2056 responses. Researchers used survey data to construct five purposive subsamples for individual qualitative interviews, identifying groups of people more likely to experience social exclusion or stigma. There were 65 online interviews. In addition, 23 trans Black people and people of colour attended focus groups. Six case studies were completed: four on initiatives to improve care and two on experiences of particular trans populations. Fifty-five service provider staff and 45 service users were interviewed. The following undermine person-centred co-ordinated care and can lead to experiences of harm: lack of respectful treatment of trans people by general practitioner practices; inadequate funding of services; lack of support during waiting; the extended and challenging nature of Gender Identity Clinic diagnostic assessments, sometimes experienced as adversarial; breakdowns in collaboration between Gender Identity Clinics and general practitioner practices over hormone therapy; lack of National Health Service psychological support for trans people. Case studies indicated ways to improve care, although each has significant unresolved issues: training in trans health care for general practitioners; third-sector peer-support workers for trans people who come to National Health Services; gender services taking a collaborative approach to assessing what people need, clarifying treatment options, benefits and risks; regional general practitioner-led hormone therapy clinics, bringing trans health care into the mainstream; psychology services that support trans people rather than assess them. Some contexts of care and experiences of particular groups of trans people were not addressed sufficiently within the scope of the project. While efforts were made to recruit people subject to multiple forms of stigma, there remained gaps in representation. The findings have significant implications for commissioners and providers of existing National Health Services gender services, including recently established pilot services in primary care. In particular they point to the need for assessments for access to transition care to be more collaborative and culturally aware, implying the value of exploring informed consent models for accessing transition-related care. Further research is needed to investigate how far the findings apply with particular subpopulations. This study is registered as Research Registry, no. 5235. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/51/08) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 28. See the NIHR Funding and Awards website for further award information.

Feasibility of in-home monitoring for people with glaucoma: the I-TRAC mixed-methods study.

Glaucoma is a chronic disease of the optic nerve and a leading cause of severe visual loss in the UK. Once patients have been diagnosed, they need regular monitoring at hospital eye services. Recent advances in technology mean patients with glaucoma can now monitor their disease at home. This could be more convenient for patients and potentially reduce costs and increase capacity for the NHS. However, it is uncertain whether self-monitoring would be acceptable or possible for patients with glaucoma. The objectives were to: identify which patients are most appropriate for home monitoring; understand views of key stakeholders (patients, clinicians, researchers) on whether home glaucoma monitoring is feasible and acceptable; develop a conceptual framework for the economic evaluation of home glaucoma monitoring; and explore the need for and provide evidence on the design of a future study to evaluate the clinical and cost-effectiveness of digital technologies for home monitoring of glaucoma. In-home Tracking of glaucoma: Reliability, Acceptability, and Cost (I-TRAC) was a multiphase mixed-methods feasibility study with key components informed by theoretical and conceptual frameworks. Expert glaucoma specialists in the UK recruited through professional glaucoma societies; study site staff and patient participants recruited through three UK hospital eye services (England, Scotland, Northern Ireland); and UK research teams recruited though existing networks. Home tonometer that measures intraocular pressure and a tablet computer with a visual function application. Patients were asked to use the technology weekly for 12 weeks. Forty-two patients were recruited. Retention and completion of follow-up procedures was successful, with 95% (n = 40) completing the 3-month follow-up clinic visits. Adherence to the interventions was generally high [adherence to both devices (i.e. ≥80% adherence) was 55%]. Overall, patients and healthcare professionals were cautiously optimistic about the acceptability of digital technologies for home monitoring of patients with glaucoma. While most clinicians were supportive of the potential advantages glaucoma home monitoring could offer, concerns about the technologies (e.g. reliability and potential to miss disease progression) and how they would fit into routine care need to be addressed. Additionally, clarity is required on defining the ideal population for this intervention. Plans for how to evaluate value for money in a future study were also identified. However, the study also highlighted several unknowns relating to core components of a future evaluative study that require addressing before progression to a definitive effectiveness trial. The main limitation relates to our sample and its generalisability, for example, the over-representation of educated persons of white ethnicity who were generally experienced with technology and research motivated. The In-home Tracking of glaucoma: Reliability, Acceptability, and Cost study has demonstrated 'cautious optimism' when considering patients' and healthcare professionals' views on the acceptability of digital technologies for home monitoring of patients with glaucoma. However, the study also highlighted several unknowns relating to the research question and design of a future evaluative study that require addressing before progression to a randomised controlled trial. Further research is required to determine the appropriate population (i.e. low vs. high risk of progression) and further refine the intervention components and delivery for planning of future evaluation studies. This study is registered as Research Registry #6213. This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR129248) and is published in full in Health Technology Assessment; Vol. 28, No. 44. See the NIHR Funding and Awards website for further award information.

Angiographic Features of Meningiomas Predicting Extent of Preoperative Embolization.

Preoperative embolization is used as an endovascular adjunct to surgical resection of meningiomas. However, there is no standardized system to assess the efficacy or extent of embolization during the embolization procedure. We sought to establish a purely angiographic grading system to facilitate consistent reporting of the outcome of meningioma embolization and to characterize the anatomic and other features of meningiomas that predict the degree of devascularization achieved through preoperative embolization. We identified patients with meningiomas who underwent preoperative cerebral angiography and subsequent resection between 2015 and 2021. Demographic, clinical, and imaging data were collected in a research registry. We defined an angiographic devascularization grading scale as follows: grade 0 for no embolization, 1 for partial embolization, 2 for majority embolization, 3 for complete external carotid artery embolization, and 4 for complete embolization. Eighty consecutive patients were included, 60 of whom underwent preoperative tumor embolization (20 underwent angiography with an intention to treat but ultimately not embolization). Embolized tumors were larger (59.0 vs 35.9 cc; P = .03). Gross total resection, length of stay, and complication rates did not differ among groups. The distribution of arterial feeders differed significantly across tumors in a location-specific manner. Both the tumor location and the identity of arterial feeders were predictive of the extent of embolization. Anterior midline meningiomas were associated with internal carotid (ophthalmic, ethmoidal) supply and lower devascularization grades (P = .03). Tumors fed by meningeal feeders (convexity, falcine, lateral sphenoid wing) were associated with higher devascularization grades (P < .01). The procedural complication rate for tumor embolization was 2.5%. Angiographic outcomes can be graded to indicate the extent of tumor embolization. This system may facilitate consistency of reported angiographic results. In addition, arterial feeders vary in a manner predicted by tumor location, and these patterns correlate with typical degrees of devascularization achieved in those tumor locations.

Menopause and Traumatic Brain Injury: A NIDILRR Collaborative Traumatic Brain Injury Model Systems Study

ObjectiveTo examine the experience of menopause symptoms in women with traumatic brain injury (TBI). DesignCross-sectional descriptive study. SettingFive sites of the TBI Model Systems (TBIMS) program. ParticipantsParticipants were 210 women, aged 40-60 years, who were not taking systemic hormones and did not have both ovaries removed: 61 participants were enrolled in the TBIMS, who were at least 2 years post-TBI and living in the community. One hundred forty-nine participants without TBI were recruited from a research registry and the metropolitan Detroit community. InterventionsNot applicable. Main Outcome MeasuresA checklist comprised of 21 menopause symptoms assessing 4 symptom clusters (vasomotor, somatic, psychological, and cognitive). ResultsTBI and non-TBI groups did not significantly differ and showed small effect sizes on vasomotor symptoms. On the remaining symptom clusters, women with TBI showed greater presence and severity of symptoms than women without TBI, as well as fewer differences between premenopausal and postmenopausal women on those symptoms. A profile indicating an additive or potentiating effect of TBI on menopause symptoms was not observed. ConclusionsFindings support a conceptual model of menopause and TBI indicating that symptoms most closely associated with estrogen decline are similar for women with and without TBI, whereas symptoms that overlap with common TBI sequelae are generally more frequent and severe among these women. Likely because of lower baseline of symptoms premenopause, postmenopausal women without TBI reported more numerous and severe symptoms relative to their premenopausal counterparts without TBI. Overall, it may be that women without TBI experience menopause as more of a “change” of life, whereas women with TBI chronically face significantly more of these symptoms than women without TBI.