Development and content validity of the Person Experiences Interview Survey (PEIS): a measure of the mental health services experiences of people with developmental disabilities.

Purpose: People with developmental disabilities and mental health service experiences have a right to be included in healthcare decisions, including the evaluation of their mental health services and providers. However, few self-report measures address this need. This study aimed to fill this gap by developing and evaluating the content validity, including comprehension, relevance, and comprehensiveness, of the Person Experiences Interview Survey (PEIS) with people with developmental disabilities and mental health experiences. Methods: The research team established a measurement framework based on the Family Experiences Interview Survey (FEIS), resulting in 21 PEIS items that were written in collaboration with young adults with developmental disabilities and mental health service experiences. Comprehension, relevance, and comprehensiveness were evaluated through cognitive interviews with people with developmental disabilities and mental health service experiences (respondents; n = 9) ages 23-49 years. Comprehensiveness and relevance were also evaluated in focus groups with family caregivers (n = 9) and mental health providers (n = 10) who serve this population. Two researchers independently coded open-ended responses to the PEIS for comprehension. A content validity index (CVI), indicating relevance, was calculated for each participant group for each item, and comprehensiveness was rated for item sets. Results: Fifteen of the 21 items met the criteria of ≥80% comprehension, with 89-100% of responses containing all or some intended information. All items met the CVI ≥80% criterion in at least two of the three groups. In all item sets, between 1 and 4 family members or providers felt one question was missing. Respondents used the response scale in a manner that corresponded with their open-ended descriptions, and family caregivers and providers had positive feedback about the response scale's visual cues and number of choices. Using these findings, four items were removed and six items were revised, resulting in a 17-item measure. Conclusion: This study presents a novel and promising measure, the Person Experiences Interview Survey (PEIS). It also demonstrates that the employment of accessible methods allows people with developmental disabilities to meaningfully evaluate mental health services and providers. The PEIS shows great promise for application in the field by engaging those directly involved in the evaluation of mental health services and providers.

Polish Adaptation and Psychometric Validation of the PREM-C9 Questionnaire for Patients with Chronic Obstructive Pulmonary Disease.

Introduction: Chronic obstructive pulmonary disease (COPD) is a common, preventable, and treatable disease. The first PREM (patient-reported outcome measure)-type questionnaire that has been dedicated to assess the experience of care in COPD is the PREM-C9. Aim: The aim of this study was to create a Polish version of the PREM-C9 and determine its psychometric characteristics. Methods: The validation procedure involved forward and back translation. We included 42 patients with COPD. The psychometric properties were assessed using Cronbach's alpha, Bartlett's test, the Kaiser-Meyer-Olkin test, and Spearman's correlation coefficient. The validity of the questionnaire was assessed using a principal component analysis for the extracted principal components. The validity of the factor analysis was demonstrated using Bartlett's sphericity test and the Kaiser-Meyer-Olkin (KMO) test. A factor analysis was performed using the Oblimin and Varimax rotation. The reliability of the questionnaire was assessed using Cronbach's alpha. Results: The Polish version of the analyzed questionnaire met all the validation criteria: face, translation, psychometric, functional, and reconstruction equivalence. Spearman's correlation results between the Polish PREM-C9 and CAT were as follows: rho = 0.44, p = 0.003539; HADS-Anxiety: rho = 0.370864, p = 0.015612; and HADS-Depression: rho = 0.387405, p = 0.011253. Conclusions: The developed Polish PREM-C9 questionnaire is a reliable and valid tool that assesses Polish COPD patients' experiences of their disease and the care they receive.

The Burden of Urinary Tract Infections on Quality of Life and Healthcare in Patients with Interstitial Cystitis.

BACKGROUND: Interstitial cystitis/bladder pain syndrome (IC/BPS) patients are more susceptible to urinary tract infections (UTIs), likely worsening pre-existing symptoms. However, this receives limited attention in guidelines. This study aimed to explore the burden of UTIs on IC/BPS patients' quality of life and their healthcare. METHODS: Two quantitative retrospective database studies were conducted in cystoscopically proven IC/BPS patients: one compiled existing patient survey data (n = 217) from July 2021 to examine physical and emotional UTI burden, and the other used a patient file database (n = 100) from January 2020 to May 2022, focusing on UTI prevalence, healthcare use, urine cultures and antibiotic resistance. RESULTS: A delay in diagnosis was seen in 70% of patients, due to doctors confusing IC/BPS symptoms with UTIs. The UTI prevalence was over 50%; these patients also report anxiety for new UTIs (70%) and worsening of IC/BPS symptoms (60%). Additionally, for UTI+ patients, healthcare consumption was significantly increased in both studies. Antibiotic resistance (80% of cultures) and prophylactic antibiotic use were common. CONCLUSIONS: These findings highlight the burden of UTIs on quality of life in IC/BPS patients and the healthcare system. These results emphasize the need for improved UTI guidelines concerning diagnosis, management and prevention for IC/BPS patients to improve quality of life and care.

Assessment of the Impact of Lower Urinary Tract Dysfunction on Quality of Life in Multiple Sclerosis Patients in Saudi Arabia-A Cross-Sectional Study.

BACKGROUND: Lower urinary tract dysfunction (LUTD) is caused by neurogenic factors that could lead to permanent injury in affected patients, and therefore result in substantial annual healthcare expenses. LUTD is very prevalent in multiple sclerosis (MS) patients and has a drastic impact on their quality of life (QOL). This study aimed to assess the effect of LUTD on the QOL of Saudi MS patients. METHODS: A cross-sectional study was carried out in Saudi Arabia using a self-administered questionnaire that included the World Health Organization Quality of Life (WHOQOL-BREF) and LURN Symptom Index (LURN SI-29). Data were analyzed and presented as frequencies and percentages. RESULTS: There were 428 patients who participated in this study; 270 were females and 158 were males. Most of the patients received a low score in all sections of the LURN part of the questionnaire. The highest scores (urgent need to urinate and excessive urination at night) were recorded in the urgency domain (47.20 ± 36.88) rather than the nocturia domain (44.74 ± 32.91). Meanwhile, the lowest score (complete control of bladder) was recorded in the incontinence domain (22.80 ± 26.80). For the WHOQOL-BREF score, the highest score (more social stability) was in the social domain (65.07 ± 21.16 for females, 60.41 ± 21.54 for males), and the lowest score (less psychological stability) was in the psychological domain (46.36 ± 9.84 for females, 46.20 ± 10.03 for males). However, there was no significant association between the four domains of the WHOQOL-BREF and the gender of the MS patients. CONCLUSIONS: LUTD is significantly associated with a lowered quality of life. Therefore, patients are recommended to consult with and be evaluated by appropriately experienced healthcare providers and clinicians. This ensures that the patients receive the best advice, accurate and effective treatment, and long-term analysis that can lead to an improvement in their quality of life.

Burden of untreated transthyretin amyloid cardiomyopathy on patients and their caregivers by disease severity: results from a multicenter, non-interventional, real-world study.

Background: The humanistic burden of transthyretin amyloid cardiomyopathy (ATTR-CM) is poorly defined. Methods: An international study to comprehensively characterize the burden of ATTR-CM on patients naïve to disease-modifying therapy and their unpaid primary caregivers using study-specific and established surveys (patients: Kansas City Cardiomyopathy Questionnaire Overall Summary [KCCQ-OS], 12-Item Short Form Health Survey [SF-12], Hospital Anxiety and Depression Scale [HADS], Patient-Reported Outcomes Measurement Information System [PROMIS] Fatigue and Dyspnea; caregivers: SF-12, HADS, PROMIS Fatigue, Zarit Burden Interview [ZBI]). All data were summarized descriptively. Results: 208 patient and caregiver pairs were included. 86% of patients were male, median age was 81 years, and 91% (141/155 with genetic testing) had wild-type ATTR-CM. Patient responses characterized the mental and physical burden of ATTR-CM, which was numerically higher among those who were New York Heart Association (NYHA) class III (n = 43) vs. class I/II (n = 156). NYHA class III patients had particularly low KCCQ-OS (36) and SF-12 physical component (27) scores, and 67% had a HADS depression score ≥8. Caregivers (median age 68 years; 85% female; 59% spouse of the patient; median duration of caregiving 1.5 years) reported that NYHA III patients more frequently required help with a range of physical activities than NYHA class I/II patients. 51% of caregivers to NYHA class III patients reported at least a mild-to-moderate burden in the ZBI. A plain language summary of this paper can be found as a supplemental material. Conclusions: Untreated ATTR-CM is a burden to both patients and their caregivers.

Chronic Migraine Epidemiology and Outcomes - International (CaMEO-I) Study: Methods and multi-country baseline findings for diagnosis rates and care.

BACKGROUND: The Chronic Migraine Epidemiology and Outcomes-International study provides insight into people with migraine in multiple countries. METHODS: This cross-sectional, observational, web-based cohort study was conducted in Canada, France, Germany, Japan, United Kingdom, and United States. An initial Screening Module survey solicited general healthcare information from a representative sample and identified participants with migraine based on modified International Classification of Headache Disorders-3 criteria; those with migraine completed a detailed survey based on validated migraine-specific assessments. RESULTS: Among 90,613 people who correctly completed the screening surveys, 76,121 respondents did not meet the criteria for migraine, while 14,492 did. Among respondents with migraine, mean age ranged from 40 to 42 years. The median number of monthly headache days ranged from 2.33 to 3.33 across countries, while the proportion of respondents with moderate-to-severe disability (measured by Migraine Disability Assessment) ranged from 30% (Japan) to 52% (Germany). The proportion of respondents with ≥15 monthly headache days ranged from 5.4% (France) to 9.5% (Japan). Fewer than half of respondents with migraine in each country reported having received a migraine diagnosis. CONCLUSION: These results demonstrated high rates of migraine-related disability and underdiagnosis of migraine across six countries. This study will characterize country-level burden, treatment patterns, and geographical differences in care.

The prevalence of self-harm and mental disorders among individuals with intellectual disabilities.

OBJECTIVE: Mental health disorders are prevalent among individuals with intellectual disabilities (ID). However, there is a lack of research on the impact of concomitant autism spectrum disorders (ASD) or attention deficit hyperactivity disorder (ADHD) on the mental health within this population. We aimed to investigate the prevalence of mental health disorders and registered healthcare visits due to self-harm among individuals with ID. METHOD: We used administrative data for all healthcare with at least one recorded diagnosis of mental health disorder or self-harm during 2007-2017 among people with a diagnosis of Down syndrome (DS; n = 1298) and with ID without DS (IDnonDS; n = 10,671) using the rest of the population in Stockholm Region (n = 2,048,488) for comparison. RESULTS: The highest odds ratios for a mental health disorder were present in females with IDnonDS (9.01) followed by males with IDnonDS (8.50), compared to the general population. The ORs for self-harm among individuals with IDnonDS were high (8.00 for females and 6.60 for males). There were no registered cases of self-harm among individuals with DS. The prevalence of an anxiety or affective disorder was higher among individuals with ID including DS with concomitant ASD or ADHD. Neighbourhood socio-economic status was associated with a lower occurrence of mental health disorders and self-harm in wealthier areas for all outcomes and for all groups. CONCLUSIONS: Self-harm and psychiatric comorbidities were common among individuals with ID without DS with an attenuated difference among those with concomitant ASD or ADHD, which calls for attention.

Prevalence, Attitudes, and Factors Influencing Uptake of the COVID-19 Vaccine in Saudi Arabia.

BACKGROUND: The availability and access to COVID-19 vaccinations are critical to a successful pandemic response. More than 70% of the population reportedly needs to be vaccinated against COVID-19 to achieve herd immunity worldwide. However, the reluctance to get vaccinated with the COVID-19 vaccines is holding up the process of vaccination and efforts to control the pandemic and its negative consequences for the global health system, society, and economy. Previous studies have shown low uptake of vaccination in some Middle Eastern countries due to negative attitudes toward vaccination, including concerns about safety and efficacy and doubts about the need for vaccination. AIM: The aim of this study is to investigate the prevalence, attitudes, and factors influencing COVID-19 vaccine acceptance among healthcare workers, academic staff, and students in Saudi Arabia after the vaccine was made widely available by the government. METHOD: A cross-sectional survey was conducted to determine the prevalence, attitudes, and association between demographic factors and uptake of the first or second dose of vaccination among Saudi Arabian health workers and students. Data were collected using an online questionnaire administered and distributed through the Qualtrics platform. RESULTS: The study recruited 173 participants from different countries and from different Saudi regions, most of whom were faculty members (n = 83). Results indicated significant differences between regions; the mean attitude score for the Western region (M 3.23) was significantly higher than that for other regions (M 3.08, p = 0.030). There was also an association between education level and number of vaccine doses received. Thus, the participants with higher education were the most compliant with national vaccination requirements (p = 0.004). Although the three professional groups reported social media as the most frequently reported source of information (p = 0.021), administrators were more likely to receive information from the MOH than other professional groups. Similarly, faculty members were more likely to receive information from colleagues and professional journals than the other two professional groups. CONCLUSIONS: Government officials should build public confidence through vaccination campaigns and devise effective health education programs to increase vaccination uptake. Authorized institutions can effectively use social media platforms to encourage vaccination and promote awareness among all audiences.

Knowledge and awareness of oral cancer: A cross-sectional survey in Trieste, Italy.

The aim of the study was to verify the knowledge on oral cancer and to assess possible differences in awareness and information basing on different demographic and subject-related factors. An anonymous survey was provided to 750 random subjects using online-based questionnaires. Statistical analysis was performed in order to evaluate the influence of demographic variables (gender, age, education) on knowledge of oral cancer and its risk factors. 68.4% of individuals knew about the existence of oral cancer, mostly from media and family/friends. Awareness was significantly influenced by gender and higher education, but not by age. Most participants recognized smoking as a risk factor, but alcohol abuse and sunlight exposure are less known, especially among less educated subjects. On the contrary, our study shows a diffusion of false information: more than 30% of the participants indicated the possible role of amalgam fillings in oral cancer onset, independently of gender, age or education. The results of our study suggest the need for oral cancer awareness campaigns, where school and healthcare professionals should be actively involved in promoting, organizing and finding methods to monitor the medium and long-term efficacy with proper methodological quality.

Adaptación y validación del Cuestionario de Trastorno de Estrés Postraumático (COVID-19-PTSD) en población peruana / Adaptation and Validation of the Questionnaire on Posttraumatic Stress Disorder in a Peruvian Population

Introducción: La alta prevalencia de trastornos mentales como el estrés, en situaciones estresantes prolongadas inducidas por una pandemia, demanda su detección y valoración oportuna; para ello se requieren instrumentos contextualizados y con adecuadas propiedades métricas. Objetivo: Validar el Cuestionario sobre el Trastorno de Estrés Postraumático y Prevalencia de Sintomatología de Estrés Postraumático en población peruana. Métodos: Estudio de tipo instrumental, realizado en la región Ica del Perú, de junio a noviembre del 2021, en 412 participantes adultos. El proceso incluyó traducción al español, evaluación del contenido por jueces y prueba piloto. La validez de constructo se evaluó mediante el Análisis Factorial Exploratorio y el ajuste con Análisis Factorial Confirmatorio, que incluyó el Método de Estimación de Mínimos Cuadrados no Ponderados Robustos; se evaluó la confiabilidad con el Omega de McDonald y comparó la sintomatología del trastorno de estrés postraumático con variables generales. Resultados: Se obtuvo una versión de dieciocho ítems, agrupados en cuatro factores que explicaron el 70,78 por ciento de la varianza total y un ajuste aceptable [x2/gl = 1,54; NFI y CFI = 0,99; SRMR = 0,052; RMSEA = 0,036 (IC90 por ciento: 0,26-0,46)]. Los ítems discriminan de forma satisfactoria; así como la escala según variable sexo, estado civil y los que tienen familiar fallecido por COVID-19. La consistencia interna fue adecuada para la escala global (ω = 0,924) y sus dimensiones (EDA = 0,740; IEAN = 0,882; A = 0,786 y CE = 0,811). Conclusión: La nueva versión peruana del instrumento posee propiedades métricas aceptables; por tanto, se recomienda su uso para valorar el trastorno de estrés postraumático y estudios de validación(AU)

Introduction: The high prevalence of mental disorders such as stress, in prolonged stressful situations induced by a pandemic, demands their timely identification and assessment; in order to do this, contextualized instruments with adequate metric properties are required. Objective: To validate the Questionnaire on Posttraumatic Stress Disorder and Prevalence of Posttraumatic Stress Symptomatology in a Peruvian population. Methods: An instrumental study was conducted in the region of Ica, in Peru, from June to November 2021, with 412 adult participants. The process included translation into Spanish, content assessment by judges, and pilot testing. Construct validity was evaluated by exploratory factor analysis; and fit, with confirmatory factor analysis, which included the robust unweighted least squares estimation method. Reliability was evaluated with McDonald's Omega, while the posttraumatic stress disorder symptomatology was compared with general variables. Results: The obtained version included 18 items, grouped into four factors that explained 70.78 percent of the total variance. Also, an acceptable fit was obtained [x2/gl=1.54; NFI and CFI=0.99; SRMR=0.052; RMSEA=0.036 (90 percent CI: 0.26-0.46)]. The items discriminate satisfactorily, as does the scale according to sex, marital status and those with a family member who died from COVID-19. Internal consistency was adequate for the global scale (ω = 0.924) and its dimensions (EDA=0.740; IEAN = 0.882; A=0.786 and CE=0.811). Conclusion: The new Peruvian version of the instrument has acceptable metric properties; therefore, its use is recommended for assessing posttraumatic stress disorder and validation studies(AU)

Sex differences in the association between social capital and healthcare use-Results from the Survey of Health, Ageing and Retirement in Europe (SHARE).

Females and males frequently report substantial differences in social capital indicators and may use healthcare distinctly. Nevertheless, the potential effect of sex on the relation between social capital and healthcare use remains unclear. This study aims to quantify the association between different indicators of individuals' social capital and healthcare use, according to sex. Data were retrieved from the Sixth Wave of the Survey of Health, Ageing and Retirement in Europe (SHARE), which was conducted in 2015, and included 68,188 participants from 18 countries. Adjusted odds ratios (AOR) and 95% confidence intervals (95%CI) were computed using logistic regression. Overall, males and females with smaller social networks, those who live alone or with any other relatives besides their partners, and those whose first close confidant was a family member or a neighbour reported fewer contacts with medical doctors or nurses, as well as with dentists or dental hygienists. Amongst females, participation in educational or training courses (AOR = 1.67, 95%CI:1.40-2.00; p for interaction = 0.035) and sport, social or any other club (AOR = 1.79, 95%CI:1.58-2.02; p for interaction = 0.043) was associated with a more frequent contact with dentists or dental hygienists. Females who participated in volunteer or charity work (AOR = 0.76, 95%CI:0.64-0.91; p for interaction = 0.042) and political or community-related organisations (AOR = 0.72, 95%CI:0.52-1.00; p for interaction = 0.030) were less likely to report the use of polypharmacy. This outcome was more frequently observed amongst females who referred feelings of severe loneliness (AOR = 1.44, 95%CI:1.22-1.68; p for interaction < 0.001). Social capital is associated with healthcare use distinctively amongst males and females. Increasing opportunities for social participation may improve healthcare use, particularly amongst females.

Perspectives toward biosimilars among oncologists: A Malaysian survey.

INTRODUCTION: Biosimilars confer significant cost-saving advantages and expand patients' access to biologic therapies in cancer care. In line with the increasing availability of antineoplastic biosimilars, it is pertinent to understand the oncologists' view on the adoption of biosimilars in their clinical practice. The study aimed to assess (i) the prevalence of biosimilar use, (ii) perception towards biosimilars, (iii) factors influencing the use of biosimilars and (iv) knowledge about biosimilars among Malaysian oncologists. METHODS: A cross-sectional survey was conducted among clinical oncologists and medical oncologists in Malaysia between January 2020 and February 2021 using a structured 31-item questionnaire. RESULTS: Among the 121 oncologists registered in the country, 36 responded (response rate = 30%). A total of 64% of the respondents prescribed biosimilars either often or always. Most oncologists (72%) agreed or strongly agreed that switching will not have a significant effect on the treatment benefit, with lower percentages saying that they agreed or strongly agreed that it will not lead to the emergence of additional adverse effects (56%) or harmful immunogenicity (64%). Patients' preferences (40%) and the non-availability of biosimilars in hospitals (34%) are the major barriers cited to the prescribing of biosimilars. Cost differences and robust pharmacovigilance activities are the two most important factors that would influence the prescribing of biosimilars. The mean score of knowledge in biosimilar among respondents was 3.81 (± 0.86) out of a maximum possible score of 6. CONCLUSIONS: The identified gap in prescribing and the use of biosimilars among Malaysian oncologists warrant educational intervention and robust pharmacovigilance activities to facilitate the prescribing of biosimilars and ultimately increase the accessibility to biologics in cancer treatment.

A survey of Canadian respiratory therapists working in the COVID-19 pandemic: The RRT perspective.

Introduction: Registered respiratory therapists (RRTs) are heavily involved in the care of individuals infected with COVID-19. The experiences and challenges specific to the RRT profession during the pandemic have not been qualified and the aim of this study is to bridge that gap. Methods: With institutional ethics approval, a cross-sectional survey was created through the survey software Redcap and made available online from 29 May to 6 July 2020. Any RRT working in Canada during the COVID-19 pandemic was eligible to participate. Responses to yes/no questions were calculated as frequencies and percentages, and free-text responses were summarized. Results: In total, 345 RRTs working in 11/13 of the provinces and territories, with varying years of experience completed the survey. The results reflected impacts of the pandemic that affected RRTs in a variety of ways at work, from being reassigned (30.7%) to caring for COVID-19 positive patients (57.4%) and intubated COVID-19 positive patients (50.7%). RRTs experienced communication issues around guidelines (66.7%) and some departments had run out of personal protective equipment (PPE; 19%). RRTs were personally impacted, including feeling overwhelmed by new and frequently changing guidelines (89.6%) and feeling concerned for themselves or their family members becoming infected because of their proximity to COVID-19 positive patients (89%). Discussion: RRTs reported being required to work more during the pandemic. The unpredictability and constantly changing schedules were sources of stress and anxiety. RRTs were faced with issues of overwhelming amounts of new information and had difficulty in disseminating it in a timely manner. Lack of guidance and lack of confidence in the current protocols added to the confusion, anxiety, and stress. RRTs were at the center of many high-risk moments for contracting the virus (intubation, extubation), and PPE shortages were a major challenge reported. RRTs working during the pandemic have been concerned for their own health and the health of their family members. Conclusion: The COVID-19 pandemic adds another layer of stress for RRT professionals who are working in high-risk situations and feel anxious, overwhelmed, and concerned about their personal safety.

Patients' expectations and experiences of provided surgery-related patient education: A descriptive longitudinal study.

AIMS: The aim of this study was to explore the educational expectations and experiences of surgical patients. DESIGN: Prospective, longitudinal, descriptive and two-centre study. Data were collected with questionnaires at the hospital and 6 weeks and 6 months postsurgery. METHODS: Patients undergoing elective surgery and hospitalized overnight from January to July 2016 answered questions about the content of received pre-operative and pre-discharge education, topics they wanted more information on, sources of information, satisfaction with and usefulness of the information and if their recovery was as expected. RESULTS: Patients (N = 697, 49% male, mean age 64.1 [SD 12.6] years) perceived the provided education as useful and satisfactory but less so after discharge. Most common topics which they expected more education about were postoperative complications, pain management, fatigue, lack of stamina and expected recovery time. Most patients received information through face-to-face teaching (79.7%) and in writing (78.4%). Expectations on recovery were related to patients' satisfaction with the education and how useful they evaluated it.

Evaluación del dolor neonatal y opinión de los profesionales sobre el uso de un sistema automático para su valoración / Evaluation of neonatal pain and opinion of professionals regarding the use of an automatic assessment system

Objetivo: conocer las características de la evaluación del dolor neonatal en las unidades neonatales (UCIN) y la opinión de los profesionales sobre el uso de un sistema automático de valoración. Método: estudio transversal (2017). Población: enfermeras y médicos de UCIN de hospitales españoles. Recogida de datos mediante cuestionario online que incluía variables del perfil del profesional, frecuencia de evaluación del dolor, escala de valoración utilizada, formación recibida, dificultades percibidas para valorar el dolor, opinión sobre la evaluación del dolor y sobre el uso de un sistema automático de evaluación. Análisis estadístico descriptivo. Programa Jamovi 1.2.7®. Resultados: 133 respuestas. El 83,5% fueron mujeres, edad media de 40 años (9,43). El 88% de hospitales fueron de tercer nivel, 44,1% profesionales de Enfermería, 72% con experiencia en UCIN superior a seis años. El 66,9% valora según el estado del neonato, el 29,3% con escala propia de la unidad, el 72,6% considera que existe un componente subjetivo en la valoración, el 48,1% no recibió formación para valorar dolor. El 93,2% encontró útil un sistema automático, para el 36,1% no sería fiable. El 23,3% opina que un sistema automático no puede sustituir la percepción humana. Conclusiones: no se aplica un protocolo consensuado para la evaluación del dolor en neonatos, existe variabilidad, a veces no se mide por falta de tiempo y cuando se mide el dato puede ser subjetivo. La mayoría considera que el uso de un sistema automático de evaluación del dolor neonatal puede resultar útil, aunque algunos dudan de su fiabilidad por desconocimiento de la tecnología aplicada actual.(AU)

Objective: to understand the characteristics of the evaluation of neonatal pain in Neonatal Intensive Care Units (NICUs) and the opinion of professionals about the use of an automatic assessment system. Method: a cross-sectional study (2017). Population: NICU nurses and doctors from Spanish hospitals. Data collection through online questionnaire which included variables of the professional profile, frequency of pain assessment, evaluation scale used, training received, difficulties perceived to assess pain, opinion about pain evaluation and about the use of an automatic assessment system. Descriptive statistical analysis; Jamovi 1.2.7® program. Results: there were 133 answers: 83.5% were women, with a mean age of 40 (9.43) years. 88% from tertiary level hospitals; 44.1% were Nursing professionals, and 72% with >6 years’ experience at the NICU. Of these respondents, 66.9% assessed pain according to the status of the newborn, 29.3% with a scale specific to the unit, 72.6% considered that there was a subjective component in the assessment, 48.1% did not receive any training to assess pain. An automatic system was regarded as useful by 93.2%, but for 36.1% it would not be reliable, and 23.3% reckoned that an automatic system could not replace human perception. Conclusions: no protocol by consensus was applied for pain assessment in newborns, there was variability, sometimes it was not measured due to lack of time, and when it was measured, data could be subjective. The majority considered that the use of an automatic pain assessment system could be useful, although some doubted its reliability due to lack of knowledge of the technology currently applied.(AU)

Behavioral and Disease-Related Characteristics of Patients with Acute Stroke during the Coronavirus Disease Pandemic.

This study aimed to evaluate the behavioral and disease-related characteristics of patients with acute stroke during the Coronavirus disease (COVID-19) pandemic. This retrospective study was conducted using the Korean Stroke Registry database from a single cerebrovascular specialty hospital. We categorized the COVID-19 pandemic (February 2020 to June 2021) into three waves according to the number of COVID-19 cases recorded and the subjective fear index of the general population and matched them with the corresponding pre-COVID-19 (January 2019 to January 2020) periods. The total number of acute stroke hospitalizations during the pre-COVID-19 and COVID-19 periods was 402 and 379, respectively. The number of acute stroke hospitalizations recorded during the regional outbreak of COVID-19 was higher than that recorded during the corresponding pre-COVID-19 period (97 vs. 80). Length of hospital stay was significantly longer during the COVID-19 pandemic than during the pre-COVID-19 period (11.1 and 8.5 days, respectively; p = 0.003). There were no significant differences in the time from onset to hospital arrival, rate of acute intravenous/intra-arterial (IV/IA) treatments, and door-to-IV/IA times between the pre-COVID-19 and COVID-19 periods. This study suggests that specialty hospitals can effectively maintain the quality of healthcare through the management of acute time-dependent diseases, even during pandemics.

Divergent Patterns in Care Utilization and Financial Distress between Patients with Blood Cancers and Solid Tumors: A National Health Interview Survey Study, 2014-2020.

Introduction: Important differences exist between the presentation, treatment, and survivorship of patients and survivors with blood cancers. Furthermore, existing research in financial toxicity has not fully addressed the relationship between medical care utilization and patient-reported outcomes of financial barriers and distress. We answered these questions by using a nationally representative survey. Methods: Respondents with blood cancers and solid tumors from the National Health Interview Survey were identified (2014−2020). We identified 23 survey questions as study outcomes and grouped them into three domains of medical care utilization, financial barriers to care, and financial distress. Associations between the three domains and associations of study outcomes between cancer types were examined using weighted univariate analyses and multivariable linear and logistic regressions. Results: The final study group consisted of 6248 respondents with solid tumors and 398 with blood cancers (diagnosed ≤ 5 years). Across all respondents with cancer, higher medical care utilization is generally associated with increased financial barriers to care. Compared to respondents with solid tumors, respondents with blood cancers had a higher level of medical care utilization (ß = 0.36, p = 0.02), a lower level of financial barriers to care (ß = −0.19, p < 0.0001), and a higher level of financial distress in affording care (ß = 0.64, p = 0.03). Conclusions: Patients and survivors with blood cancers and solid tumors demonstrate divergent patterns in care utilization, financial barriers, and financial distress. Future research and interventions on financial toxicity should be tailored for individual cancer groups, recognizing the differences in medical care utilization, which affect the experienced financial barriers.

Measuring patients' experience with renal services in the UK: development and validation of the Kidney PREM.

BACKGROUND: Patient experience is a recognized aspect of quality of care for people with chronic kidney disease (CKD), but current patient-reported experience measures (PREMs) only focus on dialysis care. We developed and validated the Kidney PREM to assess patients' experience with renal services in secondary care for any CKD stage or treatment (transplant, haemodialysis and peritoneal dialysis). METHODS: We developed the Kidney PREM in two phases, informed by a multidisciplinary expert group to ensure face validity. We organized three national data collections (2016-8) to investigate item response profiles and to conduct exploratory and confirmatory analyses to assess internal consistency. We also explored content validity in cognitive interviews and evaluated test-retest reliability. Finally, we developed the Kidney PREM Short Form for more frequent measurement of patient experience to inform local service improvements. RESULTS: We analysed 32 959 responses across data collections, with the 2018 collection covering all 71 UK renal centres. The Kidney PREM final version consisted of 38 items grouped into 13 themes, all pertaining to one underlying dimension reflecting the construct of 'patient experience' with high internal consistency (Cronbach's α = 0.94). The Kidney PREM Short Form consisted of 15 items across the same 13 themes. CONCLUSIONS: The Kidney PREM supports the collection of reliable information on patient experience that people with CKD consider relevant, regardless of CKD stage or treatment modality. Kidney PREM data have the potential to guide local and national initiatives to improve patients' experiences with renal services in the UK and other countries.

Outcomes of Care Among Patients With Gout in Europe: A Cross-sectional Survey.

OBJECTIVE: To assess health- and patient-centered outcomes in gout across Europe, and explore patient-, care-, and country-level characteristics associated with these outcomes. METHODS: Patients with self-reported physician-diagnosed gout from 14 European countries completed an online survey. Multivariable mixed-effect logistic and linear regressions were computed for health outcomes (gout flare recurrence) and patient-centered outcomes (patient satisfaction with current medication, and unaddressed goals), accounting for clustering within countries. The role of patient-, care-, and country-level factors was explored. RESULTS: Participants included 1029 patients, predominantly diagnosed by a general practitioner (GP). One or more gout flares were reported by 70% of patients and ≥ 3 flares by 32%. Gout patients reported 1.1 ± 1.2 unaddressed goals, and 80% were satisfied with current medication. Patients with ≥ 3 and ≥ 1 flares were less likely to be treated with urate-lowering therapy (ULT) (OR 0.52, 95% CI 0.39-0.70 and OR 0.38, 95% CI 0.28-0.53, respectively), but more likely to have regular physician visits (OR 2.40, 95% CI 1.79-3.22 and OR 1.77, 95% CI 1.30-2.41). Three or more gout flares were also associated with lower satisfaction (OR 0.39, 95% CI 0.28-0.56) and more unaddressed goals (ß 0.36, 95% CI 0.19-0.53). Notwithstanding, the predicted probability of being satisfied was still between 57% and 75% among patients with ≥ 3 flares but who were not receiving ULT. Finally, patients from wealthier and Northern European countries more frequently had ≥ 3 gout flares. CONCLUSION: Across Europe, many patients with gout remain untreated despite frequent reported flares. Remarkably, a substantial proportion of them were still satisfied with gout management. A better understanding of patients' satisfaction and its role in physicians' gout management decisions is warranted to improve quality of care and gout outcomes across Europe.