Development and preliminary validation of the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC).

Children and adolescents with complex chronic conditions, including those with life-threatening or life-limiting conditions, are a heterogeneous population. Many individuals exhibit sleep abnormalities that are measurable by proxy questionnaires. No suitable instrument to assess the wide range of different complex chronic conditions is currently available. The aim of the present study was to develop a screening tool-the Sleep Screening for Children and Adolescents with Complex Chronic Conditions-to effectively obtain sleep behaviour information in this population. Following a mixed-method design, potential items for the Sleep Screening for Children and Adolescents with Complex Chronic Conditions questionnaire were defined through literature research and expert meetings. In a pre-test with N = 60 family and professional caregivers, the items' relevance and comprehensibility as well as the instrument's overall design were assessed. For the main test, N = 315 participants were recruited in three tertiary paediatric hospitals. A principal components analysis detected the questionnaire's scales. Item analysis focused on mean values, range, difficulty and discriminatory power. Convergent validation of the Sleep Screening for Children and Adolescents with Complex Chronic Conditions was assessed via correlations between scale items. Most patients had neurological or neuromuscular diseases. Four scales ("Falling and staying asleep", "Sleep-associated respiration and arousal", "Daytime sleepiness" and "Sleep-associated movements") emerged. The item analysis showed satisfactory discriminative power. In the preliminary validation, all scales correlated positively with a child's care level and with various sleep circumstances items. Three scales additionally correlated with the number of complex chronic condition diagnoses. This newly developed questionnaire can provide clinicians with first indications of possible sleep problems in a growing paediatric population.

Evaluation of pre-test counselling offered for non-invasive prenatal testing (NIPT) as a primary screening tool.

The increasing popularity and expansion of non-invasive prenatal testing (NIPT) to screen for rare conditions beyond common trisomies prompts evaluation of pre-test counselling currently offered. We conducted a prospective survey to assess women's knowledge of NIPT in those who had undergone NIPT (study group) and those who were planning to have NIPT (control group). Out of the 189 questionnaires analysed, the study group did not show a higher knowledge score compared to the control group (P = 0.097). 44% misunderstood that NIPT can identify more conditions than invasive testing, 69.8% were unaware of the recommended need for nuchal translucency measurement and 52.6% were unaware of the possibility of incidental findings. 31% even considered discussing termination of pregnancy as one of the next steps if NIPT shows high risk for Down syndrome. This study shows that current pre-test counselling is inadequate. Service providers should address these knowledge gaps and assist women to make informed choices.Impact StatementWhat is already known on this subject? Pre-test counselling for non-invasive prenatal testing (NIPT) should be conducted to assist women in making an informed consent.What do the results of this study add? Our results show that a significant proportion of women are unaware of the limitations of NIPT.What are the implications of these findings for clinical practice and/or further research? Service providers should improve their pre-test counselling focusing on areas of knowledge deficiencies and misunderstanding on NIPT identified in this study.

Half a century of the inverse care law: A comparison of general practitioner job satisfaction and patient satisfaction in deprived and affluent areas of Scotland.

BACKGROUND AND AIMS: The 'inverse care law', first described in 1971, results from a mismatch of healthcare need and healthcare supply in deprived areas. GPs in such areas struggle to cope with the high levels of demand resulting in shorter consultations and poorer patient outcomes. We compare recent national GP and patient satisfaction data to investigate the ongoing existence of this disparity in Scotland. METHODS AND RESULTS: Secondary analysis of cross-sectional national surveys (2017/2018) on upper and lower deprivation quintiles. GP measures; job satisfaction, job stressors, positive and negative job attributes. Patient measures; percentage positive responses per practice on survey questions on access and consultation quality. GPs in high deprivation areas reported lower job satisfaction and positive job attributes, and higher job stressors and negative job attributes compared with GPs in low deprivation areas. Patients living in high deprivation areas reported lower satisfaction with access and consultation quality than patients in low deprivation areas. These differences in GP and patient satisfaction persisted after adjusting for confounding variables. CONCLUSIONS: Lower GP work satisfaction in deprived areas was mirrored by lower patient satisfaction. These findings add to the evidence that the inverse care law persists in Scotland, over 50 years after it was first described.

Test-retest reliability of the Epworth Sleepiness Scale in clinical trial settings.

The present analysis examined the test-retest reliability of the Epworth Sleepiness Scale in participants with excessive daytime sleepiness associated with narcolepsy or obstructive sleep apnea in three clinical trials. Intraclass correlation coefficient estimates for Epworth Sleepiness Scale scores from two solriamfetol 12-week placebo-controlled trials (one narcolepsy, one obstructive sleep apnea) and one long-term open-label extension trial (narcolepsy or obstructive sleep apnea) were calculated using postbaseline time-point pairs for the overall population in each trial, by treatment, and by primary obstructive sleep apnea therapy adherence. In the 12-week narcolepsy trial, intraclass correlation coefficients (95% confidence intervals) were 0.83 (0.79, 0.87) for weeks 4 and 8 (n = 199), 0.87 (0.83, 0.90) for weeks 8 and 12 (n = 196), and 0.81 (0.76, 0.85) for weeks 4 and 12 (n = 196). In the 12-week obstructive sleep apnea trial, intraclass correlation coefficients (95% confidence intervals) were 0.74 (0.69, 0.78) (n = 416), 0.80 (0.76, 0.83) (n = 405), and 0.74 (0.69, 0.78) (n = 405), respectively. In the open-label extension trial, intraclass correlation coefficients (95% confidence intervals) were 0.82 (0.79, 0.85) for weeks 14 and 26/27 (n = 495), 0.85 (0.82, 0.87) for weeks 26/27 and 39/40 (n = 463), and 0.78 (0.74, 0.81) for weeks 14 and 39/40 (n = 463). Placebo/solriamfetol treatment or adherence to primary obstructive sleep apnea therapy did not affect reliability. In conclusion, across three large clinical trials of participants with narcolepsy or obstructive sleep apnea, Epworth Sleepiness Scale scores demonstrated a robust acceptable level of test-retest reliability in evaluating treatment response over time.

General practitioners' evaluations of optimal timing to initiate advance care planning for patients with cancer, organ failure, or multimorbidity: A health records survey study.

BACKGROUND: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. AIM: To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories. DESIGN AND METHODS: A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses. SETTING AND PATIENTS: We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands. RESULTS: The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) (p < 0.001). The most frequently mentioned reason for cancer was "receiving a diagnosis" (21.5%), for organ failure it was "after a period of illness" (14.7%), and for multimorbidity it was "age" and "patients" expressed wishes or reflections' (both 12.0%). CONCLUSION: The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that "the" optimal timing for ACP should be seen as a "window of opportunity" for the different disease trajectories.

Validation of the Serbian version of the Pelvic Organ Prolapse/Urinary Incontinence/Sexual Questionnaire short form (PISQ-12).

INTRODUCTION AND HYPOTHESIS: Urinary incontinence (UI) and pelvic organ prolapse (POP) significantly decrease quality of life and sexual health. This study aimed to evaluate the reliability and validity of a Serbian adaptation of the short form of the Pelvic Organ Prolapse/Urinary Incontinence Sexual Function Questionnaire (PISQ-12) used in assessing sexual function in women with UI and/or POP. METHODS: This study included 416 women, 310 (74.5%) with UI and/or POP and 106 (25.5%) without UI and/or POP. The adaptation of the PISQ-12 to Serbian language was performed via back-translation. The content validity of the questionnaire was conducted by experts in the field. The reliability and validity of the PISQ-12 were analyzed. Evaluation of the data was performed using Content Validity Index (CVI), Cronbach's alpha, test-retest reliability, item total correlation and confirmatory factor analysis. RESULTS: Content validity of the Serbian PISQ-12 was 1.00 (100%). Item total correlations were between 0.459 and 0.819 (P < 0.001). The PISQ-12 had an adequate and high internal consistency (Cronbach's alpha 0.806) as well as high test-retest reliability (Pearson correlation coefficient r = 0.807; P < 0.001). Factor analysis results revealed strong construct validity. The mean scores of PISQ-12 were significantly better in the control group compared with the women with UI and/or POP. Sexual function was negatively affected by UI and/or POP as assessed with SF-36 and I-QoL questionnaires. CONCLUSIONS: This study showed that the Serbian version of the PISQ-12 is a reliable, consistent, valid and condition-specific instrument to assess sexual function in women with UI and/or POP.

Three-Minute Diagnostic Assessment for Delirium using the Confusion Assessment Method (3D-CAM): French translation and cultural adaptation.

PURPOSE: The routine use of validated diagnostic instruments is key to identifying delirious patients early and expediting care. The 3-Minute Diagnostic Assessment for Delirium using the Confusion Assessment Method (3D-CAM) instrument is a brief, easy to use, sensitive, and specific delirium assessment tool for hospitalized patients. We aimed to translate the original English version into French, and then adapt it to older high-risk patients. METHODS: Translation and adaptation of the questionnaire were guided by an expert committee and the 3D-CAM instrument developer. During the translation phase, we achieved semantic and conceptual equivalence of the instrument by conducting forward and backward translations. During the adaptation phase, we assessed the face validity, clarity of wording, and ease of use of the translated questionnaire by administering it to 30 patients and their caregivers in peri-interventional and medical intermediate care units. During both phases, we used qualitative (goal and adequacy of the questionnaire) and quantitative (Sperber score, clarity score) criteria. RESULTS: Translation: four items were judged inadequate and were revised until all reached a Sperber score of < 3/7. Face validity: 91% of patients thought the questionnaire was designed to assess memory, thoughts, or reasoning. Clarity: eight items required adjustments until all scored ≥ 9/10 for clarity. Ease of use: all bedside caregivers reported that the questionnaire was easy to complete after receiving brief instructions. CONCLUSIONS: We produced a culturally adapted French version of the 3D-CAM instrument that is well understood and well-received by older high-risk patients and their caregivers.

RéSUMé: OBJECTIF: L'administration systématique d'instruments diagnostiques validés est essentielle pour identifier précocement les patients confus. Le questionnaire 3D-CAM (3 Minute Diagnostic Confusion Assessment Method) est un outil d'évaluation bref, facile à administrer en milieu hospitalier, sensible et spécifique pour l'état confusionnel. Notre objectif était de le traduire en français, puis de l'adapter à une population de patients âgés à haut risque. MéTHODE: La traduction et l'adaptation ont été guidées par un comité d'experts et le développeur de l'instrument. Nous avons atteint une équivalence sémantique et conceptuelle en menant des traductions antérogrades, puis rétrogrades. Nous avons évalué la validité de contenu, la clarté lexicale, et la facilité d'administration du questionnaire en le soumettant à 30 patients et 30 soignants dans des unités de soins intermédiaires médicaux et péri-interventionnels. Durant les phases de traduction et d'adaptation, nous avons utilisé des critères qualitatifs et quantitatifs. RéSULTATS: Traduction : quatre questions ont été jugées inadéquates et ont été révisées pour atteindre un score de Sperber < 3/7. Validité de contenu : 91% des patients pensaient que le questionnaire était conçu pour évaluer la mémoire, les pensées, ou le raisonnement. Clarté : huit questions ont dû être modifiées pour atteindre un score de clarté ≥ 9/10. Facilité d'administration : tous les soignants pensaient que le questionnaire était facile à utiliser après une brève formation. CONCLUSIONS: Nous avons produit une version française du questionnaire 3D-CAM qui est adaptée aux patients âgés à haut risque et aux soignants en milieu de soins aigus.

The influence of age and gender on perception of orofacial esthetics among laypersons in Switzerland.

OBJECTIVE: The purpose of this study was to evaluate the perception and role of orofacial esthetics by laypersons, and how attitudes may be correlated with age and gender in Switzerland. MATERIAL AND METHODS: Self-administrated questionnaires (SAQ) were distributed both conventionally and digitally to Swiss residents over 16 years of age (range 16-99 years). The participants were identified in the medical practice, at an open house of the ZMK Bern, in elderly care centers, and via the internet (Facebook and Instagram). To verify that the participants were Swiss residents and laypersons, they were checked by an operator (conventional) or were provided an exact description of eligible participants at the beginning of the SAQ (digital). The SAQ included 30 questions with multiple-choice responses and visual analogue scales (0-100) divided into four sections regarding dental appearance with respect to body esthetics, partner selection, employment and career opportunities, and overall health/quality-of-life. For statistical analysis, respondents were segregated into two age groups (<25 years and ≥25 years) and into two gender groups (male and female). Descriptive analyses, the Fisher exact test, and Welch's t-test were applied (α = 0.05). RESULTS: Five hundred and two laypersons completed the SAQ. The study's hypothesis-that various age groups and genders have different perceptions of dental esthetics-was supported. The willingness to correct one's own dentition was lower among older participants (OR: 0.54; p = 0.001); charisma and dental esthetics were considered equally important with a trend toward charisma in both age groups (p = 0.003). The belief that excellent dentition improves employment chances at a job interview (OR: 0.47; p = 0.0003) was significantly lower among older participants, and the belief that dental correction would improve quality-of-life was significantly higher among older participants (OR: 1.81; p = 0.001). The assumption that individuals with attractive teeth appear happier was significantly lower among older respondents (OR: 0.67; p = 0.03). Women were less satisfied with their dental appearance and, proportionally, their willingness to receive correction was significantly higher (OR: 1.79; p = 0.01 and OR: 1.77; p = 0.002 relative to men, respectively). Moreover, male participants had a lower desire to have brighter teeth and undergo bleaching treatments (OR: 0.54; p = 0.002; OR: 0.53; p = 0.002). The proportion of men believing that having beautiful teeth improves attractiveness and employment chances was significantly lower (OR: 0.33; p = 0.02 and OR: 0.66; p = 0.04; respectively). CONCLUSIONS: Within the limitations of this observational study, it was concluded that age and gender of laypersons in Switzerland have a significant impact on the perception of dental esthetics. CLINICAL SIGNIFICANCE: Evaluating and quantifying perceptions of dental esthetics for daily life across various age groups and genders can improve clinicians' understanding of individual needs in order to offer patient-oriented dental care.

Dental students' observations about teaching of endodontic access cavities in a French dental school.

INTRODUCTION: Teaching in French universities has undergone deep changes for several years. Dental studies are no exception to the rule. Endodontics is one of the most difficult fields requiring good knowledge of anatomy before performing clinical procedures. The access cavity is the key step of endodontic therapy. The aim of this study was to collect and understand what students feel and expect from theoretical and practical training on endodontic access cavity. MATERIALS AND METHODS: A questionnaire survey on the teaching and learning of endodontic access cavities in a French dental school was sent by e-mail to the 4th-year students (n = 66). The questionnaire consisted of 13 questions of different formats. Qualitative variables were analysed using a word cloud according to the words of the participants. Students were also asked how to improve teaching with new educational tools. RESULTS: 60 students answered the questionnaire (response rate of 90.9%). When students were asked which stage of endodontic treatment they feared the most, performing access cavity came in 3rd place. Upper molar (71%) and lower molar (58%) appeared to have the most difficult endodontic access cavities. Within the word cloud gathered after students' answers analysis, the words "fear," "perforation," "cavity" and "axis" were highlighted. Amongst the 3 new educational tools proposed to students, most were in favour of realistic models of teeth with their ideal endodontic access cavity (79%). DISCUSSION: This study highlighted the feelings of students during their hands-on training on endodontic access cavities. Although they seemed satisfied with practical classes on endodontic access cavities, this step seemed to be stressful for students especially because of the great internal anatomical variabilities of teeth. To help them better understand the root canal anatomy and improve their training, students asked for new educational resources, especially macro-models of teeth with their optimal access cavities. CONCLUSION: This study showed that students are seeking for innovative resources in addition to traditional resources that would make it easier for them to visualise the root canal system and help them feel more comfortable and facilitate learning when performing endodontic access cavities.

Patients' knowledge about epilepsy in a tertiary medical center: A cross-sectional study from Riyadh, Saudi Arabia.

OBJECTIVE: Epilepsy is a noncommunicable disease that affects approximately 65 million people worldwide. Its management depends greatly on the self-management capacity of the individual. Patients with epilepsy (PWE) who have a good level of knowledge about their disease tend to have better coping mechanisms, as well as better compliance in taking their antiepileptic drugs (AEDs), which improves overall control of symptoms. This study aimed to evaluate the current patients' knowledge about epilepsy and identify factors associated with knowledge of different aspects of epilepsy and its management in a tertiary medical center in Riyadh, Saudi Arabia. METHODS: A cross-sectional study was carried out at a tertiary medical center in Riyadh, Saudi Arabia. Participants were included if they had a documented diagnosis of epilepsy and excluded if they were non-Saudi or had nonepileptic seizures. The Arabic version of the Epilepsy Patient Knowledge Questionnaire (EPKQ) was used to assess patient's knowledge of epilepsy definition and etiology, safety concerns, medication compliance, social activities, and legal issues of employment and driving. Fisher's exact and Chi-Square tests were used to investigate differences in knowledge of epilepsy among different segments of participants. Data management and statistical analyses were carried on using the IBM SPSS Statistics for Windows, version 25. RESULTS: A total of 126 PWE were enrolled in the study. About two-thirds of them were females, and about 68% of them were at least high-school graduates. About one-half of PWE had good knowledge of their condition (>75%), and females had better knowledge than males (p = 0.004). The majority (75.4%) of PWE were knowledgeable about the etiology of epilepsy, about 70% knew that putting a foreign object in a seizing patients' mouth was inappropriate, and only 38% of them did not have adequate knowledge of situations that increase the risk of seizure. About 40% of PWE thought pregnant women should discontinue their AEDs, 53.2% of participants knew what to do when they experience side effects from AEDs, but most of them recognized that they should not automatically stop taking their medications when they stop having seizures. Patients older than 50 years or younger than 21 years of age were less likely to recognize that it was safe for PWE to engage in different social activities (p = 0.042). About 30% of respondents believed that PWE cannot engage in most types of jobs, and more than 50% of participants did not know under which situation PWE can drive. CONCLUSION: This study revealed that about half of PWE had inadequate knowledge about their disorder. Patients with epilepsy had better knowledge about the causes of their condition compared with safety concerns and the treatment of epilepsy, whereas the majority of participants knew the types of jobs and activities that they could engage in. Hence, educational interventions are needed to promote patients' knowledge, especially in terms of safety and the legalities of employment and driving.

Dental care during COVID-19 pandemic: Follow-up survey of experts' opinion.

OBJECTIVES: The purpose of the present survey is to give an update of European experts' opinion on infection control and prevention in dentistry during second wave of pandemic. The secondary aim was to analyze how experts' opinion changed in the light of the new scientific evidence since the first wave. MATERIAL & METHODS: An anonymous online 14-item questionnaire was sent to a total of 27 leading academic experts in Oral (and Maxillofacial) Surgery from different European countries, who had completed a previous survey in April-May 2020. The questionnaire covered the topics of dental setting safety, personal protective equipment (PPE), and patient-related measures to minimize transmission risk. Data collection took place in November-February 2020/21. RESULTS: 26 experts participated in the follow-up survey. The overall transmission risk in dental settings was scored significantly lower compared to the initial survey (p < .05), though the risk associated with aerosol-generating procedures (AGP) was still considered to be high. Maximum PPE was less frequently recommended for non-AGP (p < .05), whereas the majority of experts still recommended FFP2/FFP3 masks (80.8%), face shields or goggles (88.5%), gowns (61.5%), and caps (57.7%) for AGP. Most of the experts also found mouth rinse relevant (73.1%) and reported to be using it prior to treatment (76.9%). No uniform opinion was found regarding the relevance of COVID-19 testing of staff and patients. CONCLUSION: With the continuation of dental care provision, transmission risk has been scored lower compared to the first wave of pandemic. However, high risk is still assumed for AGP, and maximum PPE remained advised for the respective treatments.

Content analysis of euthanasia polls in Australia and New Zealand: words do matter.

BACKGROUND: There has been widespread public and political interest in Euthanasia and Physician-Assisted Suicide (EPAS) in recent years. Polling in Australia and New Zealand has generally shown a majority of people support some form of legal EPAS; however, the level of support varies between polls. AIM: To explore whether public support for and opposition to EPAS as measured in historic Australian and New Zealand polls has been influenced by the wording of survey questions. METHODS: Australian and New Zealand random-sample post-1995 EPAS poll questions asked of the general public were identified and subjected to content analysis. Individual phrases and words were considered in terms of their favourability towards or unfavourability against EPAS and each poll question was assigned a net favourability score. Variation of support for EPAS based on year, location and favourability of language was analysed by various statistical methods. RESULTS: Mean public support for EPAS in Australia and New Zealand between 1995 and the present was 70.2% with support ranging between 47 and 85%. Support did not vary by location and has remained unchanged over time. However, support was positively associated with increasing levels of favourable wording, accounting for over 20% variation in mean support. Allusions to hopelessness had an especially strong effect on increasing support for EPAS. CONCLUSION: Use of emotive phrases and language is associated with influencing attitudes to EPAS in Australia and New Zealand. Therefore, caution should be exercised when interpreting public support for EPAS based on individual polls.

Skincare practices in extremely premature infants: A survey of tertiary neonatal intensive care units from Australia and New Zealand.

AIM: To investigate skincare practices in the first 2 weeks of life in extremely premature infants across tertiary neonatal intensive care units (NICUs). METHODS: A web-based secure survey invite was emailed to the medical directors of tertiary NICUs. The survey included questions on various aspects of skincare practices in the first 2 weeks of life in extremely premature infants (born before 28 weeks gestation). The person most familiar with local skincare practices was asked to complete the survey and only one response per unit was requested. We performed a descriptive analysis. RESULTS: We received responses from 30 out of 32 NICUs (response rate 93%). Twenty-five NICUs (89%) reported offering resuscitation and intensive care to infants born at ≥23 weeks gestation. All NICUs reported occurrences of skin breakdown, including medical adhesive-related skin injury (30%), abrasion/friction-associated skin injury (46%), perineal skin breakdown (55%), pressure site injury (47%) and diaper dermatitis (60%). A high level of consensus (≥75%) was observed for certain practices, such as the use of polyethylene occlusive plastic wraps at birth and aqueous chlorhexidine solution for sterile procedures, but a low level of consensus (<25%) was observed for many other practices, including the skin risk assessment tool used. CONCLUSIONS: Skin injuries in extremely premature infants are common and skincare practices vary considerably amongst NICUs. Clinical practice improvement projects and further clinical research will help improve consistency amongst NICUs. Further research is needed to assist the development of evidence-based guidelines and benchmarking for skincare practices in these vulnerable infants.

Lifetime allergic rhinitis prevalence among US primary farm operators: findings from the 2011 Farm and Ranch Safety survey.

PURPOSE: Allergic rhinitis is associated with decreased quality of life, and reduced workplace performance and productivity. This study investigated the prevalence of lifetime allergic rhinitis and factors associated with allergic rhinitis among US primary farm operators. METHODS: The 2011 Farm and Ranch Safety Survey data collected from 11,210 active farm operators were analyzed. Survey respondents were determined to have lifetime allergic rhinitis based on a "yes" response to the question: "Have you ever been told by a doctor, nurse, or other health professional that you had hay fever, seasonal allergies, or allergic rhinitis?" Data were weighted to produce nationally representative estimates. RESULTS: An estimated 30.8% of the 2.1 million active farm operators had lifetime allergic rhinitis in 2011. The allergic rhinitis prevalence varied by demographic and farm characteristics. Farm operators with allergic rhinitis were 1.38 (95% CI 1.22-1.56) times more likely to be exposed to pesticides compared with operators with no allergic rhinitis. The association with pesticide exposure for allergic rhinitis and current asthma, and allergic rhinitis alone was statistically significant and greater than that for current asthma alone. CONCLUSION: Certain groups of farm operators may be at increased risk of allergic rhinitis. Studies should further investigate the association of allergic rhinitis with specific pesticide exposure.

The communication between patient relatives and physicians in intensive care units.

BACKGROUND: Patients in intensive care units (ICUs) are often physically unable to communicate with their physicians. Thus, the sharing of information about the on-going treatment of the patients in ICUs is directly related to the communication attitudes governing a patient's relatives and the physician. This study aims to analyze the attitudes displayed by the relatives of patients and the physician with the purpose of determining the communication between the two parties. METHODS: For data collection, two similar survey forms were created in context of the study; one for the relatives of the patients and one for the ICU physicians. The questionnaire included three sub-dimensions: informing, empathy and trust. The study included 181 patient relatives and 103 ICU physicians from three different cities and six hospitals. RESULTS: Based on the results of the questionnaire, identification of the mutual expectations and substance of the messages involved in the communication process between the ICU patients' relatives and physicians was made. The gender and various disciplines of the physicians and the time of the conversation with the patients' relatives were found to affect the communication attitude towards the patient. Moreover, the age of the patient's relatives, the level of education, the physician's perception, and the contact frequency with the patient when he/she was healthy were also proven to have an impact on the communication attitude of the physician. CONCLUSION: This study demonstrates the mutual expectations and substance of messages in the informing, empathy and trust sub-dimensions of the communication process between patient relatives and physicians in the ICU. The communication between patient relatives and physicians can be strengthened through a variety of training programs to improve communication skills.

Validation of questionnaires for the measurement of health variables: Fundamental concepts. / Validación de cuestionarios para la medición de variables en salud: conceptos fundamentales.

In clinical practice and population health, it is common to use questionnaires to assess conditions or variables that are not directly observable. However, the construction and validation of these instruments or questionnaires are often poorly understood. This narrative review aims to summarize in a general way the process of construction and validation of these questionnaires in order to have a better understanding of this process, the aspects that are evaluated, and the best way to use them. The validation of questionnaires corresponds to a process of analysis of the questionnaire, aiming to measure a latent variable and its dimensions, which cannot be observed directly. A latent variable can be inferred through a set of specific attributes that are part of it, such as the items of a questionnaire, which are observable. Through a narrative review, this article addresses the fundamental concepts of questionnaire or test validation, latent variables or constructs, reliability and validity studies, and the factors that theoretically affect the latter two characteristics. Examples of these concepts are presented in the text.

Dentro de la práctica clínica, así como en la salud poblacional, es habitual utilizar cuestionarios que permiten evaluar condiciones o variables que no son directamente observables. No obstante, la construcción y validación de estos instrumentos o cuestionarios suele ser poco conocida. El objetivo de esta revisión narrativa es sintetizar de manera general el proceso de construcción y validación de estos cuestionarios, para así tener una mejor comprensión de este proceso, de los aspectos que se evalúan y de la mejor forma de utilizarlos. La validación de cuestionarios corresponde a un proceso de análisis de este, cuya finalidad es medir una variable latente o constructo, así como sus dimensiones, las que no pueden ser observadas directamente. Una variable latente puede ser inferida a través de un conjunto de atributos específicos que forman parte de ella, como los ítems de un cuestionario y que sí son observables. En este artículo se abordan de manera teórica los conceptos fundamentales de validación de cuestionarios o test, variables latentes o constructos, estudio de la confiabilidad y de la validez, así como los factores que afectan a estas dos últimas características, a través de una revisión narrativa. En el texto, se presentan ejemplos sobre estos conceptos.

Development and Preliminary Evaluation of Patient Perceptions on Safety Culture in a Hospital Setting Scale.

Objectives: Majority of the existing patient safety culture tools are designed for healthcare workers. Despite the claims that this patient safety tools are patient-centered, limited attention was given to the patients' perspectives and cultural considerations in the development. Local studies are not available in extant literature that capture patient perspectives on being safe during hospitalization. The goal of the study was to develop and provide preliminary psychometric analysis on a tool that measures patients' perception of safety culture in a hospital setting. Methods: The study was a quantitative methodological study. The instrument was developed in three phases, conceptualization and item generation through literature review, clinical observation, and focus group discussion, two rounds of expert panel review, and pilot testing. The tool was tested on 122 eligible patients admitted in a tertiary hospital. Factor analysis of the items was done to determine the underlying factor under each item. Cronbach's alpha was used to test the degree of internal consistency of the scale. Results: The Patient Perceptions on Safety Culture in Hospital Setting Scale consists of 25 items. The analysis yielded four factors explaining a total of 69.23% of the variance in the data. Items were grouped in four dimensions: Hospital workforce (4 items), Hospital Environment (5 items), Heath Management and Care Delivery (7 items), and Information Exchange (9 items). Each factor registered a Cronbach's alpha of 0.81, 0.78, 0.91, 0.94, respectively. The overall Cronbach's alpha of the scale is 0.95. Conclusion: The study offers preliminary evidence on the psychometric properties of a newly developed tool that measures patient perceptions on hospital safety culture. Subsequent studies on larger samples need to be conducted to determine the reliability and validity of the tool when applied to different population and contexts as well as determining valid cut-off points in scoring and interpretation.

A questionnaire survey on the diagnosis and treatment of Fabry nephropathy in clinical practice.

BACKGROUND: Fabry nephropathy is characterized by a deficiency of lysosomal alpha-galactosidase A, which results in proteinuria and kidney disease. The ineffectiveness of enzyme replacement therapy (ERT) for severe kidney failure highlights the need for early detection and meaningful markers. However, because the diagnosis and treatment of Fabry disease can vary according to the expertise of physicians, we evaluated the opinions of Korean specialists. METHODS: A questionnaire regarding the management of Fabry nephropathy was emailed to healthcare providers with the experience or ability to treat individuals with Fabry nephropathy. RESULTS: Of the 70 experts who responded to the survey, 43 were nephrologists, and 64.3% of the respondents reported having treated patients with Fabry disease. Pediatricians are treating primarily patients with classic types of the disease, while nephrologists and cardiologists are treating more patients with variant types. Only 40.7% of non-nephrologists agreed that a kidney biopsy was required at the time of diagnosis, compared with 81.4% of nephrologists. Thirty-eight of 70 respondents (54.3%) reported measuring globotriaosylsphingosine (lyso-Gb3) as a biomarker. The most common period to measure lyso-Gb3 was at the time of diagnosis, followed by after ERT, before ERT, and at screening. For the stage at which ERT should begin, microalbuminuria and proteinuria were chosen by 51.8% and 28.6% of respondents, respectively. CONCLUSION: Nephrologists are more likely to treat variant Fabry disease rather than classic cases, and they agree that ERT should be initiated early in Fabry nephropathy, using lyso-Gb3 as a biomarker.

Fostering globally competent dental students through virtual team-working, problem-solving and person-centred multi-disciplinary care planning.

Background/purpose: : Development and acquisition of communication, logical thinking, team-building, critical appraisal, critical thinking and person-centred multi-disciplinary care planning must be considered as skill sets and global core competencies for a dental professional. Therefore, an international online study course to foster undergraduate dental students' skill sets in these areas was established and this study aimed to report the perceptions of participants. Materials and methods: An international online course consisting of three levels pertaining to the school year was delivered to dental undergraduates of Japan and Thailand from September to December in 2021. An online questionnaire survey was conducted to obtain feedback from the participants and assess the implementation of the course. Results: In total, 64 responses were obtained from students who participated in all the assigned online sessions and completed the questionnaire (a response rate of 88%). More than 95% of students from each level felt that the programme increased their motivation to study clinical dentistry, and was beneficial for their future and made them appreciate the importance of participating in international exchange. The ratio of favourable respondents was more than 90% with a 95% confidence interval. Conclusion: Fostering globally competent dental students is important and the acquisition of necessary skill sets could be enhanced through international virtual team-working, problem-solving and person-centred multi-disciplinary care planning activities. These are beneficial for undergraduate dental student training so that they graduate with a broader global perspective and an appreciation of the importance of delivering person-centred culturally sensitive dental care.

Autistic Traits and College Adjustment.

This study evaluated the association of autistic traits (RAADS-14) with academic and social outcomes among college students using data from an online survey (N = 2,736). In the academic domain, the total trait score and all subscale scores (mentalizing deficits, social anxiety, sensory reactivity) were associated with course failure and academic difficulties independent of an autism diagnosis; the total score and mentalizing deficits also predicted lower grade point average (GPA). In the social domain, the total trait score and subscale scores were associated with lower odds of having a confidant, lower friendship quality, and higher odds of social exclusion. Subgroup analyses revealed that autistic traits had more consistently negative associations with social outcomes for students without an autism diagnosis than for students with a diagnosis. Associations were also more often significant for women than men. These results support the development of programs and services for students with autistic traits regardless of diagnostic status.