Patient Questionnaire Research Articles

Design and Psychometrics of the Awareness and Self-Care Performance Questionnaire of Diabetic Patients in the Coronavirus Disease 2019 Pandemic

Background: The sudden emergence of the coronavirus disease 2019 (COVID-19) epidemic worldwide has led to numerous problems for patients with chronic diseases, such as diabetics, due to the lack of required information to deal with the disease. The present research aims to investigate the design and psychometrics of the Awareness and Self-Care Performance Questionnaire of diabetic patients during the COVID-19 pandemic. Methods: The present methodological study aimed to investigate the design and psychometrics of the Awareness and Self-Care Performance Questionnaire. The face and content validity were assessed through both quantitative and qualitative studies. For the quantitative study, 100 diabetic patients were randomly selected during the COVID-19 pandemic. The reliability of the questionnaire was assessed using the internal consistency method by Cronbach’s alpha coefficient. Results: The original version of the questionnaire was designed with 82 items and the final version with 56 items (awareness [32 items] and self-care performance [24 items]) with seven areas, including disease characteristics, prevention ways, ways of disease transmission, disease symptoms, disease risk factors, diet, and care methods. The content validity index (CVI) was 0.97, the content validity ratio (CVR) was 0.93, and the internal consistency of the questionnaire was calculated to be 0.80 using Cronbach’s alpha coefficient, showing the appropriate validity and reliability of this questionnaire. Conclusion: The Awareness and Self-Care Performance Questionnaire of diabetic patients in the COVID-19 pandemic possesses the required validity and reliability to evaluate the knowledge level of diabetic patients in infectious pandemics, such as COVID-19, and it has the applicability to be used in similar conditions. It is suggested that the questionnaire’s construct validity be measured to enhance the content validity.

The RELIEF feasibility trial: topical lidocaine patches in older adults with rib fractures

BackgroundLidocaine patches, applied over rib fractures, may reduce pulmonary complications in older patients. Known barriers to recruiting older patients in emergency settings necessitate a feasibility trial. We aimed to establish...

Assessing the efficacy of narrowband UVB phototherapy using digital patient questionnaires and patient‐reported outcome measures (PROMs): An observational cohort study of patients with psoriasis and eczema

Assessing the efficacy of narrowband UVB phototherapy using digital patient questionnaires and patient‐reported outcome measures (PROMs): An observational cohort study of patients with psoriasis and eczema

Does Robotic Assisted Technique Improve Patient Utility in Total Knee Arthroplasty? A Comparative Retrospective Cohort Study.

Even if robotic assisted total knee arthroplasty (RATKA) is a widely used technique, there is still a gap of knowledge about whether this technology is effective in improving the patient utility. This measure is of paramount importance for conducting cost effectiveness analysis. The aim of this study was to compare the utility measure derived from self-reported outcomes questionnaires in patients who underwent RATKA compared to patients who underwent the manual surgery. We compared 72 patients operated with a robotic technique with 70 operated with traditional technique. The utility data were collected with the WOMAC (Western Ontario and McMaster University Osteoarthritis index) self-administrated questionnaire that investigates pain, stiffness and functionality of the patients, an then mapped to a utility value through a validated transforming function. We performed three surveys: the first one before the intervention (t0), the second one 1 year after the surgery (t1) and the third one at the 2 year follow up (t2). we observed higher utility values in both groups. In detail, the mean utility score in the RATKA group increased from 0.37 to 0.71 (t1) and 0.78 (t2), while in the conventional group it increased from 0.41 to 0.78 (t1) and 0.78 (t2). The fixed effect coefficients of t1 and t2 were found to be 0.37 and 0.363 (p < 0.001 for both). The coefficient of the robotic technique, along with its interaction with the t1 and t2 time effect was non-significant. Even if at t1 the utility of patient who underwent RATKA were lower, at longer follow up (t2) we found no significant difference compared to traditional technique, leaving the superiority of robotic assisted technique yet to be proved. Our results may be useful for calculating the gained or lost Quality Adjusted Life Years (QALYs), so that the health care system (or an insurance company) could make an appropriate decision whether to fund the robotic approach or not, after a careful assessment of the incremental costs incurred.

Periodontal Patients' Perceptions and Knowledge of Dental Implants-A Questionnaire Study.

Background: Highly prevalent tooth loss is observed among populations around the world. To restore masticatory function and satisfactory aesthetics, missing teeth must be replaced. Dental implants are increasingly used for this purpose. This study aimed to assess periodontal patients' knowledge and attitudes towards dental implants. Methods: 467 anonymous questionnaires of periodontal patients were analyzed. The population participants were divided according to gender, age, education and place of residence. In the statistical analysis, the chi-squared test of independence was used (p < 0.05). The main questions addressed patients' knowledge about dental implants and the factors influencing their decision to undergo implantation. Results: The majority of periodontal patients were aware of dental implants and the importance of oral hygiene in their maintenance. However, the population studied had many knowledge deficits, especially on the technical and biological aspects of implants. The lack of knowledge about peri-implantitis was surprising in the group seeking professional periodontal care. Patients obtained information mainly from the internet and from family and friends, with their dentists being the third source. Good functional and aesthetic outcomes would encourage them to undergo the implantation procedure, and high cost and the possibility of complications were the most discouraging factors. Conclusions: Given the growing popularity of implant treatment, patients should be provided with evidence-based knowledge about indications and possible contraindications to implants to make informed decisions.

Responsiveness of the Oswestry Disability Index and Zurich Claudication Questionnaire in patients with lumbar spinal stenosis: evaluation of surgically treated patients from the NORDSTEN study

PurposeTo evaluate the responsiveness of the original low back pain specific Oswestry Disability Index (ODI) and the spinal stenosis specific Zürich Claudication Questionnaire (ZCQ), and to investigate cut-off values for clinical “success” for ODI and ZCQ in surgically treated patients with lumbar spinal stenosis (LSS).MethodsWe included 601 LSS patients (218 with, 383 without degenerative spondylolisthesis) from the NORDSTEN trials. Outcome measures included ODI and ZCQ (symptom severity and physical function scales) with three alternative response parameters: scores at follow-up, absolute and relative changes from baseline to two-year follow-up. Effect size and standardised response mean evaluated internal responsiveness. External responsiveness was assessed by the Spearman rank correlation between patient-reported global perceived effect scale (GPE) and ODI and ZCQ, and receiver operating characteristics (ROC). We evaluated which cut-off values could maximise the percentage of correctly classified patients according to the GPE-anchor “completely recovered” / “much improved” for each parameter.ResultsInternal and external responsiveness were high for all three indices with effect sizes, standardized response means, ROC and corresponding area under the curve > 0.8. Correlations with GPE responses were moderate (> 0.50) for absolute change and strong (> 0.67) for relative change and follow-up scores. The 30% ODI relative change cut-off correctly classified 81% of patients to “success”, within a range of accurate cut-offs according to the GPE-anchor.ConclusionODI and ZCQ demonstrate comparable responsiveness in evaluating outcomes for surgically treated LSS patients. The 30% ODI threshold was consistent with treatment “success” in NORDSTEN trials.Trial registrationClinicalTrials.gov; NCT02007083 10/12/2013, NCT02051374 31/01/2014 and NCT03562936 20/06/2018.

An international observational study assessing conservative management in hemorrhoidal disease: results of CHORALIS (aCute HemORrhoidal disease evALuation International Study).

Aim: Real-world evidence on the management of hemorrhoidal disease (HD) is limited. This international study collected clinical practice data on the effectiveness of conservative treatments for acute HD on symptoms and quality of life (QoL), providing perspectives of treatment modalities from different continents. Patients & methods: The 4-week observational prospective CHORALIS study involved adult outpatients consulting for spontaneous complaints of hemorrhoids (graded using Goligher classification) and prescribed conservative treatments according to usual clinical practice. Assessments were: anal pain/discomfort (visual analog scale [VAS]), other signs/symptoms (patient questionnaire), Patient Global Impression of Change (PGI-C) questionnaire and disease-specific QoL (HEMO-FISS-QoL questionnaire). Results: Of 3592 participants, 3505 were analyzed (58.4% male; age 40.5±13.7years; history of HD in 48.4%; 72.1% Goligher grade I and II). Pain and discomfort were the most common symptoms. Most treatments were venoactive drugs (VADs; 90.9%), particularly micronized purified flavonoid fraction (MPFF; 73.7%) and diosmin (14.6%). All VAD-based therapies improved signs/symptoms (number/intensity/frequency of pain, discomfort, bleeding, swelling, itching and soiling) and QoL. MPFF was associated with a significantly greater proportion of patients with no symptoms (48.8 vs diosmin 34.4%, p<0.001), pain disappearance (69.7 vs diosmin 52.8%, p<0.001), treatment impact at 1week rated on PGI-C as 'very much better' (30.5 vs diosmin 17.9%, p<0.001) and shorter times to improvement (mean±SD 3.9±1.5days vs diosmin 4.2±1.7days). Conclusion: In this prospective real-world study of patients with acute HD, conservative therapies consisting mainly of VADs, including MPFF, improved the clinical signs and symptoms of disease, as well as QoL. This study evidence supports clinical advantages associated with VADs, mostly MPFF, for effectively managing acute HD.

Validation of a tagalog version of the EORTC PATSAT-C33 and EORTC OUT-PATSAT7 patient satisfaction questionnaires for patients with cancer undergoing outpatient radiotherapy.

190 Background: The satisfaction of cancer patients with their care significantly impacts their quality of life. Beyond specific cancer treatments, the delivery of care plays a vital role. Evaluating patient satisfaction with care is increasingly important in oncology due to the prolonged and intensive nature of cancer management. Discussions often focus on medical aspects, neglecting administrative and psychosocial concerns. Patient-centered care involves assessing satisfaction, which reflects perceived quality. Patient satisfaction is now recognized as a key indicator of care quality. Methods: The EORTC developed tools like PATSAT-C33 and OUT-PATSAT7 to assess satisfaction with cancer care. These instruments, translated into Tagalog using a “forward-backward” translation procedure in accordance with the EORTC QOL Study Group guidelines, were validated among Filipino cancer patients undergoing radiotherapy. The tools encompass dimensions like doctors' skills, information exchange, nurses' responsiveness, and care organization. They showed reliability and validity comparable to the original versions. Results: Construct, criterion, and factorial validity were assessed, indicating the tools measure intended constructs effectively. The multi-item scales of EORTC PATSAT-C33 and EORTC OUT-PATSAT7 have good to excellent internal consistency. A value between 0.8 - 0.9 represents good reliability, whereas a Cronbach alpha of≥0.9 represents excellent reliability. Criterion validity was confirmed by comparing them with a validated Filipino satisfaction scale. Each dimension identified in the original study applies to Filipino cancer patients, suggesting the tools' applicability across populations. Conclusions: Despite some demographic biases in the study sample, the translations proved valid and reliable. These Tagalog versions are recommended for use with native Tagalog-speaking Filipino cancer patients. Further studies with larger sample sizes may enhance reliability. [Table: see text]

Translation, cross-cultural adaptation and psychometric properties of the Urdu version of the avoidance endurance behavior questionnaire in patients with chronic musculoskeletal pain.

The Avoidance Endurance Questionnaire (AEQ) successfully measures the fear-avoidance and endurance-related responses to chronic pain. The objective of this study was to translate, cross-culturally adapt AEQ into Urdu and assess the reliability and validity of the Urdu version. For the translation and cross-cultural adaptation process, the Beaton Guidelines were followed. A total of 103 participants responded to the Urdu version of the AEQ SF-12, Pain Catastrophizing Scale (PCS) and Numeric Pain Rating Scale (NPRS) at baseline and after 48 hours. The test-retest reliability was assessed using the intraclass correlation coefficient (ICC). Cronbach's alpha was used to measure internal consistency. To measure validity, Pearson's correlation between the subscales of AEQ-Urdu and other outcome measures (SF-12, PCS and NPRS scores) were used (p< 0.05). The mean age of the total 103 participants was 32.7 ± 10.90 among which 45 (43.6%) were male and 58 (56.3%) were female. The pre-final version of the translated AEQ was tested on 40 Urdu speaking participants and no major changes were made. The Cronbach's alpha for all subscales of the AEQ-Urdu ranged from 0.848-0.990. AEQ-U showed an excellent test-retest reliability with the ICC ranging from 0.775-0.996. The majority of the subscales of AEQ showed significant (p< 0.05) positive correlation with pain scales (PCS and NPRS) and negative correlation with the domains of SF-12. The AEQ-U has reliable and valid construct validity, good internal consistency, and test-retest reliability, indicating that it has adequate psychometric features and can be a useful tool for evaluating pain responses in patients with chronic musculoskeletal pain.

Spiritual Care for Cancer Patients at the End-of-Life.

Spiritual care for patients at the end of life is an important element in their holistic care. The aim of this study is to assess the opinions of cancer patients with limited prognosis about the importance of faith in fighting illness and the factors contributing to a better adjustment to illness and to their self-reconciliation and spiritual well-being. This study used a specially designed questionnaire for cancer patients with limited prognosis. The 30 respondents were patients with an estimated prognosis of less than 1 month, cared for in a unit with palliative and home care beds. The patients emphasized the importance of family as a supporter in the fight against disease (90%), followed by faith (66.7%) and a care team (63.3%). The most common concerns expressed were related to the course of their disease, family distress, fear of death, and the Russian-Ukrainian war. Family and faith represent important factors in supporting and caring for a patient at the end-of-life. Patients who felt spiritually at peace and were supported in their faith by family and a priest had a better spiritual state.

Actitan: A Natural Complex for Managing Diarrhea—Insights from Cross-Sectional Survey Research Involving Patients, Pharmacists and Physicians

Diarrhea continues to be a global health problem as acute diarrhea carries the risk of dehydration, while both acute and chronic diarrhea can significantly affect patients’ quality of life and reduce productivity. The innovative medical device Actitan, which consists of a complex of natural molecules, could be an effective option for the treatment of diarrhea from various causes. The aim of this post-market cross-sectional study was to evaluate the perceived efficacy, safety and usage pattern of the two formulations for adults (Actitan-P) and children (Actitan-F) among patients/child caregivers, physicians and pharmacists. Participants completed online questionnaires with closed multiple-choice questions that were rated on a verbal 5-point Likert scale. These surveys were conducted via the online platform Real World Data, which provides digital questionnaires for patients, doctors and pharmacists. Two separate surveys were conducted for the two formulations, with a total of 2630 participants (1488 participants for Actitan-P and 1142 participants for Actitan-F). Overall, the results indicate a high level of efficacy and safety of the product. In the case of Actitan-F, more than 96% of caregivers rated safety as good or excellent, and over 92% rated efficacy as good or excellent. Actitan-P also received positive feedback: nearly 86% of patients reported good/excellent efficacy, and more than 93% rated safety as good or excellent. These positive evaluations were confirmed by physicians and pharmacists, who also did not report adverse effects. In summary, this study confirms the role of Actitan as a safe and effective option for the treatment of diarrhea of different causes and in different patient groups, including young children.

Reliability and validity of the Turkish version of the medication practical barriers to adherence questionnaire in patients with chronic diseases.

The aim of this study was to evaluate the validity and reliability of the Turkish version of the Medication Practical Barriers to Adherence Questionnaire (MPRAQ-TR). This is a validation study conducted between August 2022 and March 2023 in the ambulatory services of a secondary care private hospital located in Istanbul, Türkiye, among patients (18years of age and older) with chronic diseases. After the Turkish translation and cultural adaptation of the MPRAQ, and a pilot think-aloud study, the following psychometric properties were assessed: internal consistency by calculating the Cronbach's alpha coefficient, 2-week test-retest reliability, convergent validity by calculating Spearman's rank correlation between the MPRAQ-TR and the Turkish version of Medication Adherence Report Scale (MARS), and predictive validity by evaluating the association between the MPRAQ-TR score and nonadherence to medications. Among the 380 patients (response rate = 89.6%), 72.1% were nonadherent to their medications. The intraclass correlation coefficient was 0.99 for MPRAQ-TR scores (95% CI, 0.98-0.99; p < 0.001). The Cronbach's alpha of the MPRAQ-TR was 0.853. There was a moderate negative correlation between the scores on the MARS and the MPRAQ-TR (Spearman's rho = - 0.525; p < 0.01), supporting the convergent validity of the MPRAQ-TR. In the univariate analysis, the total score of MPRAQ-TR was associated with increased odds of nonadherence to medications (p < 0.01). MPRAQ-TR shows good psychometric properties and can be used to evaluate the practical adherence barriers of patients with chronic diseases.

Content Validity and Psychometric Evaluation of the Crohn's Symptom Severity (CSS) Questionnaire in Patients with Moderately to Severely Active Crohn's Disease.

Individuals living with Crohn's disease (CD) experience burdensome symptoms. As such, it is important to measure CD symptom severity in clinical research. The goal of this study was to evaluate the content validity, psychometric performance, and score interpretability of a new patient-reported instrument, the Crohn's Symptom Severity (CSS) questionnaire, among adolescents and adults with moderately to severely active CD. Cognitive debriefing interviews (N = 30; n = 20 adults, n = 10 adolescents) were conducted to evaluate the content validity of the CSS. Additionally, the CSS scores were evaluated for reliability and validity using data from a phase3 randomized clinical trial of risankizumab (NCT03105128; N = 850). Meaningful within-patient change (MWPC) thresholds were estimated using anchor-based methods. All interview participants (n = 30/30, 100.00%) reported the CSS was easy to complete and most participants (n = 28/29, 96.55%) reported that the CSS was relevant to their experience of CD. Among the clinical trial subjects (N = 850) the following was found for the CSS: mostly acceptable item-total correlations (0.26-0.79); weak to moderate inter-item correlations (r = 0.07-0.57), good internal consistency (Cronbach's α = 0.76-0.87); intraclass correlation coefficients ranged from 0.48 to 0.70, not consistently exceeding the acceptable range for test-retest reliability (0.70); acceptable convergent validity and known-groups results; and demonstrated sensitivity to change. Analyses supported an MWPC estimate of 6-11 points. This study supports use of the CSS for measuring CD symptoms and sleep impact among adolescents and adults aged 16 and older with moderately to severely active CD in clinical research. NCT03105128 (registration date 4 April 2017).

Disability in cluster headache is more than attack frequency - results from and validation of the English version of the Cluster Headache Impact Questionnaire (CHIQ)

BackgroundCluster headache (CH) is associated with high disability. The Cluster Headache Impact Questionnaire (CHIQ) is a short, disease-specific disability questionnaire first developed and validated in German. Here, we validated the English version of this questionnaire.MethodsThe CHIQ was assessed together with nonspecific headache-related disability questionnaires in CH patients from a tertiary headache center and an American self-help group. Results155 active episodic and chronic CH patients were included. The CHIQ showed good internal consistency (Cronbach’s α = 0.91) and test-retest reliability (ICC = 0.93, n = 44). Factor analysis identified a single factor. Convergent validity was shown by significant correlations with the Headache Impact Test™ (HIT-6™, ρ = 0.72, p < 0.001), the Hospital Anxiety and Depression Scale (HADS depression: ρ = 0.53, HADS anxiety: ρ = 0.61, both p< 0.001), the Perceived Stress Scale (PSS-10, ρ = 0.61, p < 0.001) and with CH attack frequency (ρ = 0.29, p < 0.001). Chronic CH patients showed the highest CHIQ scores (25.4 ± 7.9, n = 76), followed by active episodic CH and episodic CH patients in remission (active eCH: 22.2 ± 8.7, n = 79; eCH in remission: 14.1 ± 13.1, n = 127; p < 0.001). Furthermore, the CHIQ was graded into 5 levels from “no to low impact” to “extreme impact” based on the patients’ perception. Higher CHIQ grading was associated with higher attack and acute medication frequency, HIT-6™, HADS and PSS scores.ConclusionThe English version of the CHIQ is a reliable, valid, and disease-specific patient-reported outcome measure to assess the impact of headaches on CH patients.

Exploring role of prefrontal cortex region of brain in children having ADHD with machine learning: Implications and insights

Objective Attention deficit hyperactivity disorder (ADHD), is a general neurodevelopmental syndrome. This affects both adults and children, causing issues like hyperactivity, inattention, and impulsivity. Diagnosis, typically reliant on patient narratives and questionnaires, can sometimes be inaccurate, leading to distress. We propose utilizing empirical mode decomposition (EMD) for feature extraction and a machine learning (ML) algorithm to categorize ADHD and control. Method Publicly available Kaggle dataset is used for research. The EMD technique decomposes an electroencephalogram (EEG) waveform to 12 intrinsic mode functions (IMFs). Thirty-one statistical parameters are generated over the first 6 IMFs to create an input feature vector for the deep belief network (DBN) classifier. Principal component analysis (PCA) is utilized to reduce dimension. Findings Experimental results are compared on prefrontal cortex channels Fp1 and Fp2. After an in-depth evaluation of all metrics, it is observed that, in patients with ADHD, the prefrontal cortex regulates attention, behavior, and emotion. Our findings align with established neuroscience. The critical functions of the brain, such as organization, planning, attention, and decision making, are performed by the frontal lobe. Novelty Our work provides a novel approach to understanding the disorder’s underlying neurobiological mechanisms. It has the potential to deepen our understanding of the condition, improve diagnostic accuracy, personalize treatment methods, and, ultimately, improve outcomes for those affected.

“I didn’t even wonder why I was on the floor” – mixed methods exploration of stroke awareness and help-seeking behaviour at stroke symptom onset

IntroductionTo better target stroke awareness efforts (pre and post first stroke) and thereby decrease the time window for help-seeking, this study aims to assess quantitatively whether stroke awareness is associated with appropriate help-seeking at symptom onset, and to investigate qualitatively why this may (not) be the case.MethodsThis study conducted in a German regional stroke network comprises a convergent quantitative-dominant, hypothesis-driven mixed methods design including 462 quantitative patient questionnaires combined with qualitative interviews with 28 patients and seven relatives. Quantitative associations were identified using Pearson’s correlation analysis. Open coding was performed on interview transcripts before the quantitative results were used to further focus qualitative analysis. Joint display analysis was conducted to mix data strands. Cooperation with the Patient Council of the Department of Neurology ensured patient involvement in the study.ResultsOur hypothesis that stroke awareness would be associated with appropriate help-seeking behaviour at stroke symptom onset was partially supported by the quantitative data, i.e. showing associations between some dimensions of stroke awareness and appropriate help-seeking, but not others. For example, knowing stroke symptoms is correlated with recognising one’s own symptoms as stroke (r = 0.101; p = 0.030*; N = 459) but not with no hesitation before calling help (r = 0.003; p = 0.941; N = 457). A previous stroke also makes it more likely to recognise one’s own symptoms as stroke (r = 0.114; p = 0.015*; N = 459), but not to be transported by emergency ambulance (r = 0.08; p = 0.872; N = 462) or to arrive at the hospital on time (r = 0.02; p = 0.677; N = 459). Qualitative results showed concordance, discordance or provided potential explanations for quantitative findings. For example, qualitative data showed processes of denial on the part of patients and the important role of relatives in initiating appropriate help-seeking behaviour on patients’ behalf.ConclusionsOur study provides insights into the complexities of the decision-making process at stroke symptom onset. As our findings suggest processes of denial and inabilities to translate abstract disease knowledge into correct actions, we recommend to address relatives as potential saviours of loved ones, increased use of specific situational examples (e.g. lying on the bathroom floor) and the involvement of patient representatives in the preparation of informational resources and campaigns. Future research should include mixed methods research from one sample and more attention to potential reporting inconsistencies.

AB035. Validation of EORTC brain cancer module (EORTC QLQ-BN20) for assessment of health-related quality of life in glioma patients in Singapore.

Existing international data has shown that glioma patients suffer from poorer health-related quality of life (HRQoL). The European Organization for Research and Treatment of Cancer (EORTC) brain cancer-specific Quality of Life Questionnaire (QLQ-BN20) was developed to be together with EORTC Core Quality of Life Questionnaire (QLQ-C30) for cancer patients, highlighting issues particularly relevant to brain tumor patients. It has since been translated and validated across numerous cohorts. However, its psychometric properties have yet to be examined in Singapore. This study aimed to validate the use of QLQ-BN20 in a nationally representative sample of glioma patients in Singapore. Eighty-seven patients who had undergone neurosurgery for glioma from six hospitals in Singapore completed three self-reported measures of HRQoL (the EuroQol EQ-5D-5L, EORTC QLQ-C30, and EORTC QLQ-BN20). Descriptive statistics summarized their characteristics and scores on the questionnaires. Psychometric properties of QLQ-BN20 examined included convergent and discriminant validity, internal consistency (Cronbach's alpha), and construct validity (Spearman's correlation). Clinical validity of QLQ-BN20 was determined based on whether QLQ-BN20 scores could differentiate patients with good and poor functional status as measured by Karnofsky Performance Scale and Barthel's Index. The QLQ-BN20 was demonstrated to have good convergent validity (item-own scale correlation >0.70) and discriminant validity (item-own scale correlation higher than item-other scale correlation). There is high internal consistency, both overall (α=0.88) and within multi-item subscales (α=0.74-0.88). Conceptually similar subscales between different tools were more strongly correlated. For instance, the QLQ-C30 physical functioning subscale and the QLQ-BN20 motor dysfunction subscale (r=-0.65, P<0.001), and the QLQ-C30 cognitive functioning subscale and the QLQ-BN20 cognitive deficits subscale (r=-0.51, P<0.001). QLQ-BN20 was also able to distinguish between functional statuses of patients (P<0.05). This study supports the validity and reliability of the EORTC QLQ-BN20 among patients with glioma in Singapore. There is good convergent and discriminant validity, internal consistency, construct validity, and clinical validity. The QLQ-BN20 is a valuable supplement to the QLQ-C30. Hence, we recommend expanding its use for all glioma patients and possibly brain cancer patients in Singapore.

Using polygenic risk modification to improve breast cancer prevention: study protocol for the PRiMo multicentre randomised controlled trial

IntroductionEstablished personal and familial risk factors contribute collectively to a woman’s risk of breast or ovarian cancer. Existing clinical services offer genetic testing for pathogenic variants in high-risk genes to...

Endocrine, gender dysphoria, and sexual function benefits of gender-affirming bilateral orchiectomy: patient outcomes and surgical technique.

Gender-affirming bilateral orchiectomy (GABO) may be completed as either a standalone procedure (sGABO) or at the same time as gender-affirming vaginoplasty (vGABO). GABO is postulated to decrease gender-affirming hormone therapy (GAHT) dosages and reduce gender dysphoria, but these phenomena are not empirically described in the medical literature. The primary aim of this study was to describe changes in GAHT dosages after sGABO and vGABO. A secondary aim was to assess sGABO patients' preoperative decision-making priorities and postoperative satisfaction. A retrospective chart review identified 204 patients who completed GABO as either a standalone procedure (64% of patients) or at the same time as vaginoplasty (36%). Patient demographic data, surgical outcomes, and pre- and postoperative GAHT dosage data were recorded. Patients completed an opinion questionnaire to assessed decision-making priorities, as well as postoperative satisfaction and changes in quality-of-life measures. Primary outcomes included pre- and postoperative dosages of estradiol, progesterone, and spironolactone. Secondary outcomes included sGABO patient priorities, satisfaction with sGABO, changes in quality-of-life measures between sGABO and vGABO patients, and sGABO recommendations to future patients. The sGABO and vGABO patients experienced a statistically significant dosage reduction in all three GAHT assessed: estradiol, progesterone, and spironolactone (P < .05). All patients discontinued spironolactone postoperatively. Zero complications related to GABO were recorded for patients in either group. The patient questionnaire revealed that sGABO patients prioritize decreasing endogenous testosterone and reducing their GAHT as most important in their decision to undergo sGABO prior to vaginoplasty. A majority of sGABO patients reported improvement in all nine quality-of-life indices. None of the sGABO patients would recommend against sGABO to a friend who is waiting for vaginoplasty. For patients who are interested in vaginoplasty, sGABO may serve as a more immediate, low-risk, intermediary step that comes with the benefits of GABO, including significant GAHT medication reduction and gender dysphoria relief. This study offers a comprehensive evaluation of the impact of GABO on patients, combining empirical data with subjective patient feedback. Limitations include the retrospective design and the use of unvalidated survey questions. Prevaginoplasty GABO is a viable option to more immediately alleviate gender dysphoria and reduce GAHT medications for patients who are interested in gender-affirming vaginoplasty.

Linking epidemiological and genomic data in cases of enteric fever in England to inform clinical management and public health action.

To explore the feasibility of linking data from enhanced surveillance patient questionnaires from each enteric fever case in England with genome sequencing data, including antimicrobial resistance (AMR) profiles, from the corresponding isolate of typhoidal salmonellae. After linking data we interrogated the merged dataset and assessed the utility of passive surveillance data to match and monitor antimicrobial treatment regimens in enteric fever patients with the AMR profiles of the infectious agent. A high proportion of cases were given antibiotics (n = 1230/1415; 86.9%); half of the cases stated the class of antibiotic they were given (n = 630/1239) and half were prescribed cephalosporins (n = 316/630). Reported treatment with a combination of antibiotics increased with symptom severity. Nearly half of isolates (n = 644/1415; 45.5%) had mutations conferring resistance to ciprofloxacin. Based on genome-derived AMR profiles, typhoidal salmonellae isolates inferred to be susceptible to the recommended first-line antimicrobials were twice as likely to be isolated from individuals residing in the least deprived areas compared with the most deprived (n = 26/169; 15.4% versus n = 32/442; 7.2%). Due to the high proportion of missing data obtained from patient interviews, we recommend a more transparent and systematic approach to recording the antibiotic prescription details by healthcare professionals in primary and secondary care. A more robust approach to data capture at this point in the care pathway would enable us to audit inconsistencies in the prescribing algorithms across England and ensure equitable treatment across all sections of society. Integrating prescribing data with the genome-derived AMR profiles of the causative agent at the individual patient level provides an opportunity to monitor the impact of treatment on clinical outcomes, and to promote best practice in real time.