Patient Interviews Research Articles

The economic burden of diagnostic uncertainty on rare disease patients

Abstract Background It often takes a long time before a rare disease is diagnosed. Without a diagnosis, the right therapy often cannot be carried out and without the right therapy, the patients are denied the opportunity for a cure or relief from their symptoms. In addition, rare diseases can also have economic consequences for those affected. This study aimed to investigate the extent to which a rare disease affects the income and work performance of the patients concerned and whether the use of AI in diagnostics would have the potential to reduce economic losses. Methods The work performance and income of 71 patients of the outpatient clinic for rare inflammatory systemic diseases with renal involvement at Hannover Medical School were analyzed during the course of the disease. The WHO Health and Work Performance Questionnaire (HPQ) was used to collect data. During the patient interviews, the questionnaire was completed four times: at the onset of the first symptoms, when a diagnostic decision support system (DDSS) would have suggested the correct diagnosis, at the time of diagnosis and at the current status. Results With the onset of the diagnostic odyssey, the monthly net income of the patients under study dropped by an average of 5.32% due to lower work performance or work absenteeism. With the correct diagnosis, the original or even a better income of 11.92% could be achieved. Loss of income due to illness was more massive in patients with a rare disease with joint, muscle and connective tissue involvement than in patients with rare vasculitides. If a DDSS had been used, the loss of income would have been 2.66% instead of the actual 5.32%. Conclusion Rare diseases resulted in temporary or existing income losses in 28.17% of the patients. Losses in work performance and income were related to the type of disease and were more pronounced in patients with joint, muscle or connective tissue disease than in patients with rare vasculitides. The use of a DDSS may have the potential to reduce the negative income effects of patients through earlier correct diagnosis. Trial registration Retrospectively registered.

First experiences with the introduction of genetic counselors in human genetic services in the German‐speaking countries

AbstractIn 2019, the Medical University of Innsbruck introduced the first Genetic and Genomic Counseling master's program in the German‐speaking countries. A major challenge of this process was the absence of practicing Genetic Counselors (GC) in these countries, leading to a lack of experience with GCs in medical genetic services and the absence of a legal framework for the profession. Consequently, student placements within the program commenced with neither the students nor their supervising consultants having any previous experience of collaborative teamwork between clinical geneticists and GCs. To share insights from the initial implementation phase, supervising consultants from the seven student placement institutes were invited to participate in semi‐structured interviews guided by open‐ended questions. From these interviews, three models of interprofessional teamwork between GCs and clinical geneticists emerged: (1) the alternating or tandem model, (2) qualified preliminary and follow‐up patient interviews, and (3) the provision of genetic (counseling) services without genetic counseling in the legal sense. In addition, the interviewees provided recommendations for addressing legal concerns and for the effective establishment of appropriate compensation structures for GCs within the German‐speaking countries. Clinical geneticists taking part in the study estimated that the integration of GCs could potentially enhance their counseling capacity by as much as 50%. Importantly, they did not foresee any reduction in counseling quality caused by the inclusion of GCs. This study provides evidence that the GC profession can provide additional skills to human genetic services and positively impact both patient support and overall capacity of genetic services also in the German‐speaking countries.

DISP-09. IMPROVING ADHERENCE TO CANCER CARE IN UNDERSERVED PATIENTS WITH CENTRAL NERVOUS SYSTEM TUMORS

Abstract Patients with central nervous system tumors have disease-specific symptoms such as aphasias, motor symptoms, neuropsychiatric symptoms, or seizures that make treatment adherence difficult. This is further exacerbated by the social determinants of health – patients from historically marginalized groups or those with lower socioeconomic status have additional barriers to treatment. The Integrated Cancer Care Access Network (ICCAN) is a multi-institutional patient navigation program assisting patients who express socioeconomic needs during cancer treatment. In this pilot program, we assessed the impact of ICCAN on treatment adherence and quality of life of CNS cancer patients from marginalized backgrounds. 42 participants with primary brain tumors or brain metastases were recruited from inpatient and outpatient services at Memorial Sloan Kettering Cancer Center to enroll in ICCAN-CNS. Patients were eligible if they were 18 years or older, receiving active treatment or under active surveillance, and screened positive for an essential need. Through standardized patient interviews and questionnaires, we evaluated their needs such as food access, housing, and financial needs. The clinical research coordinator interviewed the patients via phone, taking approximately 60 minutes. The interviews comprised an Essential Needs Assessment, Health Related Social Needs Assessment, NCCN Distress Thermometer, and an ICCAN-CNS questionnaire focused on neurology-specific symptoms. Caregivers helped complete the questions for patients with cognitive impairments. Patients were then matched with resources based on their initial needs assessment. The interviewer conducted 2, 4, and 6-month follow-ups to see if new needs emerged for which resources were provided. Response to the program was overwhelmingly positive with many patients expressing gratitude for the resources provided to them. This pilot demonstrates the feasibility of CNS tumor patients participating in the ICCAN intervention and the need for additional patient navigation programs and interventions that focus on the social determinants of health.

DPYD genotype-guided dose personalisation for fluoropyrimidine-based chemotherapy prescribing in solid organ cancer patients in Australia: GeneScreen 5-FU study protocol

BackgroundFluoropyrimidine (FP) chemotherapies are commonly prescribed for upper and lower gastrointestinal, breast and head and neck malignancies. Over 16,000 people with cancer require FP chemotherapies per annum in Australia. Between 10 and 40% patients experience grade 3–4 (≥ G3) toxicities that require hospital-based management ± intensive care admission. Approximately 1% of patients die secondary to FP toxicities. Prospective screening for DPYD gene variants (encoding the key enzyme for FP catabolism) can identify patients at risk of ≥ G3 toxicity and allow for dose adjustment prior to first FP exposure. Evidence supports this as a cost-effective method of improving patient safety and reducing healthcare burden internationally; however, no Australian data confirms its feasibility on a large scale.MethodThis investigator-led, single-arm study will determine large scale feasibility of prospective DPYD genotyping, confirming patient safety and cost-effectiveness within the Australian health care system. 5000 patients aged 18 years and older with solid organ cancers requiring FP chemotherapy will be consented and genotyped prior to commencing treatment, and early toxicity (within 60 days) post-FP exposure will be determined. Toxicity data for DPYD variant carriers who have dose adjustments will be compared to the wild-type cohort and historical cohorts of carriers who did not undergo genotyping prior to FP exposure, and prospective variant carriers who do not undergo dose-adjustment. Prevalence of the four standard DPYD gene variants will be confirmed in an Australian population. Additionally, health economic analysis, implementation research via semi-structured interviews of patients and clinicians, and feasibility of UGT1A1 genotyping will be conducted.DiscussionThis study will determine the prevalence of DPYD gene variant status in Australia and its impact on FP-induced toxicity among Australians with cancer. Feasibility and cost-effectiveness for Australian health care system will be estimated to support national roll-out of prospective DPYD genotyping prior to FP administration. Additionally, feasibility will be confirmed with the intention of including UGT1A1 in future pharmacogenomic panels to aid chemotherapy prescribing.Trial registrationThis trial was registered with the Australian and New Zealand Cancer Trials Registry on 13th Dec 2023, ACTRN12623001301651.

Measurement of acute postoperative pain intensity in orthopedic trials: a qualitative concept elicitation study.

Pain intensity is an important outcome in clinical trials of surgery because pain relief is important to patients. Currently, recommended scales are the numeric rating scale 0-10 and visual analogue scale. However, these scales allow for considerable influence of individual imagination, previous experience, and coping skills, limiting proficiency in comparative clinical trials. We aimed to explore postoperative expressions of "how much it hurts"-the first step to improve pain intensity measurement. This was a qualitative study using inductive content analysis: words and visual cues describing pain intensity were collected from (i) existing pain intensity measures by search of COSMIN, PubMed, and Google, (ii) patient interviews recorded and transcribed word-for-word, (iii) clinician interviews transcribed likewise, and (iv) 100 patient telephone interviews with notes taken. After familiarization, the collected expressions were labelled inductively in categories and assembled in tables (case and theme-based matrices). Descriptors fell into 12 categories: intensity (slight/strong), evaluative (negligible/unbearable), cognitive impact (distracting/can be ignored), activity impact (limits some/all activity), sleep impact (can/cannot sleep), examples (like stubbing a toe), physical signs (crying/writhing), associated symptoms (nauseating/tiring), treatment (ice helps/need morphine), affective (annoying/dreadful), discriminative (aching/piercing), and general recovery (hindering recovery/functional interference). Many visual cues were also identified. Literature and recorded interviews gave rise to the categories, and telephone interviews found saturation, providing no further categories. Pain intensity is expressed by terms that fall into 12 categories and by a variety of graphic elements. This advances development of a patient-reported outcome measure of pain intensity for orthopedic trials.

The Effect of Mobile Application Follow-Up on Treatment Compliance and Self-Care Management in Patients With Hypertension: Randomized Controlled Trial.

Hypertension (HT) is a global health problem. Although there are effective treatment protocols, patients have difficulty in adapting to regular use of drugs, diet, and lifestyle changes. Mobile apps can be a potential alternative for managing HT and improving self-care behavior. This study aimed to determine the effect of mobile application follow-up on treatment compliance and self-care management in patients with HT. This randomized controlled trial was conducted in November 2021 and March 2022 with 40 experimental and 40 control group patients with HT. Research data were collected using a patient information form, "Hill-Bone Hypertension Treatment Compliance Scale (HBHTTCS)," "Hypertension Self-Care Profile-Motivation Scale (HTSPMS)," a mobile application program (daily blood pressure, pulse, medication, diet, exercise tracking) uploaded to the mobile phones of the patients, and individual motivational messages. The mean total score of the HBHTTCS at Week 6 was 14.57±1.89 and the mean total score of the HTSPMS was 78.15±2.05.There was a statistically significant difference in mean total HTSPMS (p = 0.000) and HBHTTCS (p = 0.000) scores and mean scores on medical (p = 0.002) and nutrition (p = 0.002) subscales of HBHTTCS between the first interview (1st-week follow-up) and the last interview (6th-week follow-up) of patients in the intervention group. This study showed that mobile application follow-up increased motivation levels and treatment compliance in patients with HT and resulted in better self-care. These positive findings indicate importance of integrating mobile applications in the disease management of HT patients. ClinicalTrials.gov ID: NCT05334446, https://clinicaltrials.gov/ct2/show/NCT05334446.

Short-term Outcomes of Robot-assisted Colectomy Using the Overlap Method for Right-sided Colon Cancer.

The recent development of minimally invasive surgery has led to transition from laparoscopic right colectomy (LC) to robot-assisted right colectomy (RC) in Japan. However, it is unclear whether the introduction of RC in municipal hospitals could be as safe as that in high-volume centers in Japan. Therefore, this retrospective study aimed to compare the short-term operative outcomes of RC and LC for right colon cancer at a local municipal hospital in Japan. Patients with stage I-IV right colon cancer who underwent elective RC or LC between January 2021 and July 2023 were retrospectively analyzed. Patients with double cancer and those who underwent delta anastomosis were excluded. Postoperative surveillance included patient interviews, physical examinations, tumor marker examinations, and whole-body computed tomography every six months. Forty patients were analyzed, and 24 (60%) and 16 (40%) patients assigned in the LC and RC groups, respectively, were compared. The operative time, bleeding, postoperative complications, and pathological examinations did not differ significantly between the LC and RC groups. RC using overlapping anastomoses was comparable to LC in terms of short-term operative outcomes. The introduction of RC with overlapping anastomosis is a feasible surgical technique.

Development and Validation of the Decisions to use Opioids Measure

BackgroundMillions experience inadequately managed acute pain each year. Opioids are an important tool for managing pain; however, recent reductions in opioid prescriptions have exacerbated preexisting challenges in pain management. Moreover, patient expectations and desires for pain management may drive additional opioid use. There is an important need to characterize patient motivations for using opioids in order to develop promising interventions. The aim of this study was to develop the Decisions To use Opioids (DTO) measure. MethodsWe used an exploratory sequential mixed methods design to create items for the DTO measure. Qualitative data from patient interviews and focus groups informed the development of items for the DTO. We evaluated the content validity of candidate items with nine experts using the content validity index (CVI) and conceptual significance. Face validity was assessed via cognitive interviews with five emergency department (ED) participants who experienced acute pain. ResultsWe generated an initial pool of 52 items. Expert ratings provided evidence of content validity on 40 items, as indicated by an item CVI score of 0.83 or higher. Nine items with CVI scores of <0.83 were retained and revised due to the conceptual significance. The remaining three items were discarded. ConclusionsThis study provided evidence of content and face validity of the DTO measure for ED patients. Further psychometric evaluation is needed to gather data regarding the DTO's internal consistency, construct validity, and criterion validity.

Healthcare, school and daily life experiences of patients with microphthalmia or anophthalmia and their parents.

This qualitative study explored the lived experiences of the patients with microphthalmia and anophthalmia and their parents, focusing on the healthcare, school settings and daily life challenges to improve patient management. In-depth interviews were conducted in Stockholm, Sweden, from October 2022 to June 2023. Participants were recruited through the St Erik Eye Hospital database (2008-2022), and the data was analysed using reflexive thematic analysis. The study included 15 patients (9 female and 6 male), with a median age of 21 years (range 15-31), and 1 parent per patient. Five key themes were identified from the parental interviews and three from the patient interviews. Both groups emphasised the need for improvements in healthcare, including better physician continuity, emotional support, information provision and prosthesis functionality. Families of those with severe bilateral visual impairment highlighted the need for additional school and daily life support. While some parents had future concerns, most patients viewed their condition as a natural part of life. Patients and parents shared insights on the psychosocial impact and suggested improvements in the healthcare and school settings, providing valuable guidance for enhancing care and management for this patient group.

"There is a lot of shame that comes with this": A qualitative study of patient experiences of isolation, embarrassment, and stigma associated with overactive bladder.

Beyond causing physical discomfort, overactive bladder (OAB) is distressing to patients across a variety of psychosocial domains. In this qualitative component of a larger mixed methods study, we explore patients' lived experience with OAB to understand how this condition impacts individuals on a personal and social level, as well as their experiences interacting with the health care system. A total of 20 patients and 12 physicians completed a questionnaire and semi-structured interview. The interview guide, developed in an iterative fashion by the authors, included questions about treatment decision making as well as experiences living with or treating OAB; this manuscript focuses on the questions probing lived experiences and interactions between patients and physicians. The interviews were recorded, transcribed and inductively coded and analyzed according to the principles of interpretive description to develop themes. Analysis of patient and physician interviews yielded five key themes: isolation due to OAB diagnosis, social stigma associated with noticeable OAB symptoms, embarrassment from interactions with the health care system, feeling invalidated and dismissed by physicians, and OAB patients as a "vulnerable" population with "desperation" for cure. OAB causes patients marked distress beyond their physical symptoms; it causes feelings of isolation from friends and family and makes them feel embarrassed to discuss their condition with loved ones and physicians alike. Efforts to destigmatize OAB, validate patient experiences, and improve access to OAB care may help diminish the psychosocial burden of OAB.

Development of a codebook for the narrative analysis of in-hospital trauma interviews of patients following stroke.

Given their sudden onset and life-threatening consequences, strokes and transient ischemic attacks (TIAs) can trigger posttraumatic stress disorder (PTSD). To gain a deeper understanding of the potential influence of factors in patients' descriptions of these medical events on PTSD, we conducted a standardized trauma interview with a convenience sample of patients hospitalized for suspected stroke/TIA (N = 98) to assess the details and emotional experience of the stroke/TIA event. Three researchers reviewed the interviews and the research literature on risk and protective factors for PTSD. From this analysis, a codebook with descriptions, examples, and scoring protocols for eight Likert scale, two categorical, and four binary codes was developed. Upon demonstrating sufficient interrater reliability, the research team scored all narratives. Three superordinate themes were identified in the analysis: distress (e.g., fear, helplessness), potential protective factors (e.g., positive expectancies, concern for loved ones), and level of detail (e.g., somatic detail, emotional detail). Differences in perceptions, themes, and expectations emerged in the narratives, indicating a wide range of responses following stroke/TIA. Additionally, patient age was negatively correlated with scores for the fear, r = -.34, p <.001, and negative consequences, r = -.24, p =.018, codes and positively associated with the likelihood of having positive expectancies, OR = 1.05, 95% CI [1.00, 1.10], p =.039. These findings provide a more comprehensive understanding of how patients reflect on their experiences post-stroke/TIA and can inform future research on the contributions of trauma narrative characteristics and emotional responses to PTSD risk.

Patient-reported observations on medical procedure timeliness (PROMPT) in breast cancer: a qualitative study.

Timeliness of care is an important healthcare outcome measure. The objective of this study was to explore patient perspectives on the timeliness of breast cancer diagnosis and treatment at accredited breast cancer centers. In this qualitative study, 1hour virtual interviews were conducted with participants 18-75years old who were diagnosed and treated for stage 0-III breast cancer at a National Accreditation Program for Breast Centers facility from 2018 to 2022. Thematic analysis was used to identify key themes of participant experiences. Twenty-eight participants were interviewed. Two thematic domains were identified: etiologies of expedited or delayed care and the impact of delayed or expedited care on patients. Within these domains, multiple themes emerged. For etiologies of expedited or delayed care, participants discussed (1) the effect of scheduling appointments, (2) the COVID-19 pandemic, (3) dissatisfaction with the timeline for various parts of the diagnostic workup, and (4) delays related to patient factors, including socioeconomic status. For the impact of expedited or delayed care, patients discussed (1) the emotional and mental impact of waiting, (2) the importance of communication and clear expectations, and (3) the impact of electronic health portals. Patients desired each care interval (e.g., the time from mammogram to breast biopsy) to be approximately 7days, with longer intervals sometimes preferred prior to surgery. These patient interviews identify areas of delay and provide patient-centered, actionable items to improve the timeliness of breast cancer care.

Call the experts: identifying stakeholders in the long-term care of youth with hypospadias

Long-term follow-up for individuals with hypospadias remains a critical area of need, yet evidence-based guidelines for such follow-up are lacking, and the role of involvement of relevant experts is not yet established. Using our hypospadias-specific health-related quality of life conceptual framework and a subsequent qualitative study of prepubertal males and parents of males with hypospadias, we identified potential priorities for long-term follow-up of youth with hypospadias. Using thematic codes from our patient and parent interviews, we searched PubMed for relevant articles and identified the specialties represented by all the authors of these articles. Our search strategy revealed consistent expertise across HRQOL themes and subthemes, including pediatric and adult urology, health psychology, psychiatry, endocrinology, genetics, and social work. Communication experts, as well as patients and families, were also represented in our literature search. Using these findings, we compiled a comprehensive list of potential stakeholders to inform the development of holistic care guidelines for individuals with hypospadias. By engaging these stakeholders, we aim to develop consensus-based, long-term follow-up guidelines and tools to address the evolving physical and psychosocial needs of people with hypospadias over a lifetime. The use of qualitatively derived thematic codes to search for relevant literature is an accessible approach to identifying relevant stakeholders. These findings underscore the importance of involving diverse, multidisciplinary expertise to ensure comprehensive, patient-centered care in complex genitourinary conditions.

Estimating the Prevalence of Primary Hypothyroidism in Karbala City, and Modulation of Clinical Manifestations Among Patients Receiving Levothyroxine; A Single Center Study

Background: Hypothyroidism has a wide range of clinical manifestations and general symptoms, including but not limited to obesity, tiredness, poor concentration, depression, widespread muscle soreness, menstruation abnormalities, and constipation. The administration of a daily dosage of levothyroxine is sufficient for the successful management of hypothyroidism, as it facilitates the restoration of serum thyroid stimulating hormone (TSH) levels to their normal range. Several factors can influence the absorption of levothyroxine in the human body, including age, weight, the presence of other medical problems, and dietary intake. The aim of this study was to assess the prevalence of primary hypothyroidism and alteration in clinical presentation associated with replacement therapy. Methods: This was a cross-sectional, observational study conducted over at Al Hassan Metabolism, Endocrine, and Diabetes Center (HMEDC) in Karbala city. The study team created a questionnaire, and data was collected from face-to-face patient interviews, which included various sociodemographic variables, TSH and ferritin levels, drug interactions, as well as signs and symptoms exhibited both prior to and following treatment. Additionally, the patient treatment regimen and the specific doses of levothyroxine administered are also recorded. Results: the total number of cases visited Al Hassan Metabolism, Endocrine, and Diabetes Center (HMEDC) during the study period was (10800). The prevalence of thyroid diseases was 300 (2.8%). The rate of primary hypothyroidism out of the total number of hypothyroid cases was 85.1%. (61%) of the patients had normal levels of TSH whereas (42%) of the patients were found to be undertreatment. A total of (84%) of the patients exhibited normal levels of ferritin. The patients exhibited a reduction in their signs and symptoms following the administration of therapy. Conclusion: treatment with levothyroxine improved sluggish speech, constipation, lack of appetite, cold sensitivity, weight gain, and weariness. There is no observed correlation between the dosage of levothyroxine and the manifestation of signs and symptoms.

Development of a tool for generating comprehensible, individualized and digitalized outpatient letter

Abstract Background Patients often remember little from a medical consultation or a conversation with a doctor. A comprehensible, individual patient letter summarizing the consultation can support, as a German project which successfully implemented a digital tool to generate such a letter in inpatient care showed. Based on this, our aim is to develop a tool for letters in outpatient care in Switzerland, to support understanding of the consultation and increase patient’s health literacy (HL). Methods The development of the tool was conducted participatively with targeted health professionals (HP) and patients with a chronic disease to 1) identify specific patient groups and situations, 2) confirm eligibility and receive concrete input regarding structure and content, and 3) to ensure the technical practicality and usability by the target groups. Concretely, several expert and patient interviews, a focus group and consultation observations were performed. Further workshops and usability tests are planned. Results We first defined 8 criteria to identify situations suitable for the development of the letter (e.g. high information need) and interviewed 5 experts on selected topics. Based on this, chronic back pain was chosen for a deeper feasibility analysis: A focus group interview (n = 4 HP) and 5 telephone interviews with patients confirmed the eligibility and provided information on the structure and content of the letter. Observations of 5 consultations provided further insights. Then, a first concept for the letter’s content was developed and is currently being finalized. It consists of: 1) summary; 2) background; 3) diagnosis; 4) treatment; and 5) next steps and includes infoboxes and a glossary. Conclusions The tool for patient letters can be adapted to other diseases (e.g. chronic back pain) and settings (outpatient care). In a next phase, the letter will be piloted in an outpatient clinic and evaluated with HP and patients. The effect on HL will also be assessed. Key messages • Comprehensible, individualized, and digitalized patient letters can help patients to deal with health information and take better decisions for their health and well-being. • The developed patient letter and the corresponding tool should be easily adaptable for other diseases and settings.

Prognostic impact of SGLT2-inhibitor therapy on survival in patients with transthyretin amyloid cardiomyopathy

Abstract Background Sodium-glucose co-transporter 2 inhibitors (SGLT2i) significantly improve cardiovascular outcomes in patients with heart failure across the whole spectrum of ejection fraction. Recently published data indicates the safety and tolerability of SGLT2i therapy in patients with transthyretin amyloid cardiomyopathy (ATTR-CM). However, there is a lack of evidence regarding the impact of SGLT2i therapy on clinical outcomes in those patients. Purpose This study aims to investigate the association between SGLT2i therapy and clinical outcomes in patients with ATTR-CM. Methods This is an analysis of a prospective registry conducted at an expert center for hypertrophic cardiomyopathies. We included all participants with a confirmed diagnosis of ATTR-CM, who were enrolled until December 2022. Prior and concomitant SGLT2i treatment was systemically assessed according to the patient interview and medical records. Patients’ outcomes were retrieved from local medical and health insurance records. Results We enrolled 116 patients, of whom 7 patients (6%) were treated with SGLT2i at inclusion and 44 patients (38%) were started on SGLT2i therapy during the observational period while 65 patients (56%) were SGLT2i-naïve. There were no significant differences in baseline characteristics between groups, as shown in the table. Median (interquartile range) age was 80 (76-82) years with 15% females. Median N-terminal pro-brain natriuretic peptide (NT-proBNP) was 2844 (1519-5033) pg/ml, median estimated glomerular filtration rate (eGFR) 58 (46-69) ml/min/1,73m2, and median troponin T 56 (34-83) pg/ml. During a median follow-up of 2.6 (1.8-3.7) years, 28 patients (24%) died, of whom 6 patients (5%) were in the treatment group and 22 patients (19%) in the control group. In univariate Cox-regression analysis, SGLT2i treatment was significantly associated with a lower mortality (HR 0.325, 95%CI 0.132-0.802, p=0.015). This association persisted after adjusting for age and sex (HR 0.347, 95%CI 0.139-0.867, p=0.023). However, when treatment initiation time was considered, the benefit did not remain statistically significant. No significant associations between SGLT2i treatment and worsening heart failure hospitalizations or cardiovascular death were observed. Conclusion In a prospective registry-based cohort of patients with ATTR-CM, SGLT2i therapy was associated with significantly better survival, with a potential treatment initiation time bias. These results suggest that SGLT2i may exert beneficial effects in patients with ATTR-CM and warrant a randomized controlled trial.

A novel multi-model feature generation technique for suicide detection

Automated expert systems (AES) analyzing depression-related content on social media have piqued the interest of researchers. Depression, often linked to suicide, requires early prediction for potential life-saving interventions. In the conventional approach, psychologists conduct patient interviews or administer questionnaires to assess depression levels. However, this traditional method is plagued by limitations. Patients might not feel comfortable disclosing their true feelings to psychologists, and counselors may struggle to accurately predict situations due to limited data. In this context, social media emerges as a potentially valuable resource. Given the widespread use of social media in daily life, individuals often express their nature and mental state through their online posts. AES can efficiently analyze vast amounts of social media content to predict depression levels in individuals at an early stage. This study contributes to this endeavor by proposing an innovative approach for predicting suicide risks using social media content and machine learning techniques. A novel multi-model feature generation technique is employed to enhance the performance of machine learning models. This technique involves the use of a feature extraction method known as term frequency-inverse document frequency (TF-IDF), combined with two machine learning models: logistic regression (LR) and support vector machine (SVM). The proposed technique calculates probabilities for each sample in the dataset, resulting in a new feature set referred to as the probability-based feature set (ProBFS). This ProBFS is compact yet highly correlated with the target classes in the dataset. The utilization of concise and correlated features yields significant outcomes. The SVM model achieves an impressive accuracy score of 0.96 using ProBFS while maintaining a low computational time of 5.63 seconds even when dealing with extensive datasets. Furthermore, a comparison with state-of-the-art approaches is conducted to demonstrate the significance of the proposed method.

Two Outbreaks of Legionnaires Disease Associated with Outdoor Hot Tubs for Private Use - Two Cruise Ships, November 2022-July 2024.

Legionnaires disease is a serious pneumonia caused by Legionella bacteria. During November 2022-June 2024, CDC was notified of 12 cases of Legionnaires disease among travelers on two cruise ships; eight on cruise ship A and four on cruise ship B. CDC, in collaboration with the cruise lines, initiated investigations to ascertain the potential sources of on-board exposure after notification of the second potentially associated case for each ship. Epidemiologic data collected from patient interviews and environmental assessment and sampling results identified private hot tubs on selected cabin balconies as the most likely exposure source. To minimize Legionella growth, both cruise lines modified the operation and maintenance of these devices by removing the heating elements, draining water between uses, and increasing the frequency of hyperchlorination and cleaning. Hot tubs offer favorable conditions for Legionella growth and transmission when maintained and operated inadequately, regardless of location. Private hot tubs on cruise ships are not subject to the same maintenance requirements as are public hot tubs in common areas. Given the range of hot tub-type devices offered as amenities across the cruise industry, to reduce risk for Legionella growth and transmission, it is important for cruise ship water management program staff members to inventory and assess private balcony hot tubs and adapt public hot tub maintenance and operations protocols for use on private outdoor hot tubs.

Pharmacist-led hospital intervention reduces unintentional patient-generated medication discrepancies after hospital discharge

BackgroundMedication reconciliation can significantly reduce clinically important medication errors at hospital discharge, but its impact on post-discharge medication management has not been investigated. We aimed to investigate the incidence of patient-generated medication discrepancies 30 days after hospital discharge and the impact of a pharmacist-led medication reconciliation coupled with patient counselling on clinically important discrepancies caused by patients.MethodsA pragmatic, prospective, controlled clinical trial was conducted at the University Clinic Golnik, Slovenia. Adult patients were divided into an intervention group and a control group. The intervention group received pharmacist-led medication reconciliation at admission and discharge, plus patient counselling at discharge. Medication discrepancies were identified by comparing the therapy prescribed in the discharge letters with the therapy 30 days after discharge, obtained through telephone patient interviews. Discrepancies were classified as intentional or unintentional, and their clinical importance was assessed.ResultsThe study included 254 patients (57.9% male, median age 71 years), with 136 in the intervention group and 118 in the control group. Discrepancies occurred with a quarter of the medicines (617/2,441; 25.3%) at 30 days after hospital discharge, and patients themselves caused half of the discrepancies (323/617; 52.4%), either intentionally (171/617; 27.7%) or unintentionally (152/617; 24.6%). Clinically important discrepancies occurred in 18.7% of intentional and 45.4% of unintentional patient-generated changes. The intervention significantly reduced the likelihood of clinically important unintentional patient-generated discrepancies (OR 0.204; 95%CI: 0.093–0.448), but not clinically important intentional patient-generated discrepancies (OR 2.525; 95%CI: 0.843–7.563). The latter were more frequent among younger, male patients and patients hospitalized for respiratory diseases.ConclusionThe study emphasizes the importance of addressing discrepancies made by patients after hospital discharge, which can result in potentially harmful outcomes. It also shows that a pharmacist-led hospital intervention can significantly reduce discrepancies in the early post-discharge period. These findings can guide the development of future services to improve patient support for medication management after hospitalization.

Primary and residual cardiometabolic risk factors among young adults in a Russian city

BackgroundCardiovascular diseases are a leading cause of mortality and a significant contributor to temporary and permanent disabilities worldwide. This study aimed to investigate the burden of primary and residual cardiometabolic risk factors in a sample of young adults in the Russian city of Kazan.MethodsThis case-control study used the Cardiometabolic Disease Staging (CMDS) classification system, which has been validated in several countries. The study included 191 individuals aged 25–44 years who met the inclusion criteria but did not meet any exclusion criteria. Data collection involved a patient card with questions from the World Health Organization’s STEPS instrument, face-to-face patient interviews, and a physical examination. Anthropometric assessments included height, weight, and waist circumference measurements. Body composition was evaluated using bioelectrical impedance measurements. Patients also underwent in-depth laboratory biochemical analyses.ResultsThe study cohort was comprised of 97 females (50.8%) and 94 males (49.2%). The median age of participants was 35.00 years [IQR: 30.00–39.00]. The study cohort showed an increase in all anthropometric parameters, with abdominal obesity and overweight reaching 100% in the CMDS 3. Apart from atherogenic lipids and raised blood pressure, other risk factors that precipitate residual risk and were not part of CMDS, such as insulin levels, insulin resistance, leptin values, and hyperuricemia, increased as CMDS levels increased.ConclusionsThe prevalence of cardiometabolic risk factors was high in young adults in Kazan. This study highlights the need for the early identification and management of cardiometabolic risk factors in young adults to prevent the development of cardiovascular diseases later in life.