The Mediator Role of Illness Representations in Patients with Obstructive Sleep Apnea: A Preliminary Study / [El papel mediador de las representaciones de la enfermedad en pacientes de apnea obstructiva del sueño: un estudio preliminar]

Background: This preliminary study examined the mediating role of illness representations on health-related quality of life (HRQoL) between adherent and poorly adherent obstructive sleep apnea patients (OSA) to the automatic positive airway pressure (APAP) therapy. Method: A total of 185 patients were assessed on determinants of APAP treatment, illness representations, family coping, and self-efficacy, at T1 (prior to APAP treatment) and T2 (1 to 2 months with APAP treatment). Results: Regarding the determinants of APAP, adherent patients showed higher self-efficacy, outcome expectations, and decisional balance index, compared to poorly adherent patients. Adherent patients also showed higher family coping and HRQoL, but less threatening cognitive representations compared to poorly adherent patients. Illness cognitive and emotional representations mediated the relationship between self-efficacy/family coping and HRQoL, in adherent patients. Only illness cognitive representations mediated the relationship between self-efficacy and HRQoL in poorly adherent patients. Conclusions: The results highlight the importance of illness representations during OSA treatment in the promotion of adherence to APAP.(AU)

Antecedentes: Este estudio preliminar examina el papel mediador de la representación de la enfermedad en la calidad de vida relacionada con la salud (CVRS) entre pacientes con apnea obstructiva del sueño (AOS) observantes y poco observantes de la terapia de presión positiva automática en las vías respiratorias (APAP). Método: Se evaluó a un total de 185 pacientes sobre los determinantes del tratamiento APAP, las representaciones de la enfermedad, el afrontamiento familiar y la autoeficacia en T1 (antes del tratamiento APAP) y T2 (1 a 2 meses con tratamiento APAP). Resultados: En cuanto a los determinantes de la APAP, los observantes mostraron mayor autoeficacia, expectativas de resultados e índice de equilibrio decisional en comparación con los poco observantes. Los observantes también mostraron un mayor afrontamiento familiar y CVRS pero menos representaciones cognitivas amenazantes en comparación con los observantes deficientes. Las representaciones cognitivas y emocionales de la enfermedad mediaron la relación entre la autoeficacia/afrontamiento familiar y la CVRS en pacientes observantes. Solo las representaciones cognitivas de enfermedad mediaron la relación entre la autoeficacia y la CVRS en pacientes de baja observancia. Conclusiones: Los resultados destacan la importancia de las representaciones de la enfermedad durante el tratamiento de la AOS en la promoción de la adherencia a la APAP.(AU)

Evaluación clínica y social de pacientes depresivos en un programa de Hospital de Día Psicogeriátrico / Clinical and social evaluation of depressed patients in a Psychogeriatric Day Hospital program

Fundamento. El objetivo de este estudio fue identificar los problemas de los pacientes con sintomatología depresiva grave (GDS >9) mediante la escala HoNOS65+, evaluar la efectividad de un programa de hospitalización parcial para reducir los síntomas depresivos graves a GDS ≤ 9, e identificar los predictores de respuesta. Material y métodos. Estudio pre-post de pacientes con sintomatología depresiva grave tratados en el Hospital de Día Psicogeriátrico (HDPG) de Pamplona (España) entre 2013 y 2020. Se compararon las puntuaciones obtenidas en las escalas HoNOS65+, MMSE, GDS, BARTHEL, ALSAR y COTE al ingreso y al alta, y se determinaron los factores pronósticos de no mejora. Resultados. El 75,3% de los 81 pacientes fueron mujeres, con edad media 69,9 años (rango: 57-88). Al alta, la sintomatología depresiva grave se mantuvo en el 25,9% de los pacientes, los cuales mejoraron significativamente en las escalas HoNOS65+ total y COTE, pero mantuvieron los problemas de deterioro físico e incrementaron los cognitivos. Los pacientes con GDS ≤ 9 al alta redujeron significativamente los problemas presentados al ingreso, excepto el nivel de dependencia (Barthel). Al ingreso, los pacientes que no mejorarán mostraron mayores puntuaciones en sintomatología depresiva (GDS) y en problemas conductuales y sociales (HoNOS65+); las tres variables fueron predictores independientes de no mejora de la sintomatología depresiva grave. Conclusiones. El programa del HDPG impactó positivamente en los pacientes mayores con sintomatología depresiva grave. La mejoría clínica y social alcanzada apoya el formato de HDPG como una alternativa adecuada para la atención de estos pacientes.(AU)

Background. The aim of this study was to identify the problems of patients with severe depressive symptoms (GDS>9) according to the HoNOS+65 scale, to evaluate the effectiveness of a partial hospitalization program to reduce severe depressive symptoms, and to identify independent predictors. Methods. Pre-post study of patients with depression treated at the psychogeriatric Day Hospital (HDPG) of Pamplona (Spain). The scores obtained on the HoNOS+65, MMSE, GDS, BARTHEL, ALSAR, and COTE scales were compared at admission and discharge, and the prognostic factors for no improvement of severe depressive symptoms were determined. Results. The 75.3% of the 81 patients were women, with a mean age of 69.9 years (range: 57-88). At discharge, severe depressive symptoms only remained for 25.9%, who significantly improved on the HoNOS+65 total and COTE scales while problems of physical deterioration were maintained and cognitive ones increased. Patients with GDS <9 at discharge showed significant reductions in all the problems presented at admisión, except for the level of dependency (Barthel). On admission, the patiens who did not improve showed more severe despressive symptoms and greater behavioral and social problems: the three variables were independent predictors for no improvement of severe depressive symptoms. Conclusions. The HDPG program had a positive impact on patients with severe depressive symptoms. The clinical and social improvement achieved supports the HDPG format as an adequate alternative for the care of elderly patients with severe depressive symptoms.(AU)

The European guideline on the assessment and diagnosis of psychiatric disorders in adults with intellectual disabilities

Background and objectives. In most countries worldwide, general adult psychiatrists look after the mental health of adults with intellectual disabilities (ID) without appropriate specialist training in the field. It is, therefore, necessary to develop a practice guideline to help these clinicians to assess and diagnose psychiatric disorders in adults with ID. Methods. We have developed an evidence and consensus-based practice guideline for the assessment and diagnosis of major functional psychiatric disorders in adults with ID. Several senior psychiatrists from different European countries formed a guideline development group who assessed the evidence gathered from a systematic literature search to produce the guideline. Results. Adults with ID develop the same psychiatric disorders as their non-ID counterparts. The overall rate of major functional psychiatric disorders such as schizophrenia, depressive disorder, bipolar disorder, and anxiety disorders seems to be somewhere between 14.4-22.4%. However, if a wider definition of psychopathology and mental ill-health is considered including depressive and anxiety symptoms, behaviours of concern, and other neurodevelopmental disorders such as autism spectrum disorder the rate becomes much higher than that in the general population. The risk factors for psychiatric disorders seem similar in both the ID and the non-ID populations. However certain risk factors such as genetic burden, certain comorbidities, psychosocial adversities, and reduced coping capacity are more prevalent among adults with ID. Conclusion. This guideline describes how the main symptoms of major psychiatric disorders may manifest differently in adults with ID and provides recommendations as to how to address these issues in day-to-day clinical practice.

The impact of symptom screening on survival among patients with cancer across varying levels of pre-diagnosis psychiatric care.

BACKGROUND: Patients diagnosed with cancer often experience considerable challenges with mental health, and those who had more intense psychiatric care prior to their cancer diagnosis have a higher risk of mortality. As prior research demonstrated a survival benefit among patients screened for symptoms using the Edmonton symptom assessment system (ESAS), this study aims to examine the association between being ESAS-screened and the risk of mortality across varying intensity levels of pre-diagnosis psychiatric care utilization. METHODS: We conducted a retrospective matched cohort study using population-wide administrative databases. All patients diagnosed with cancer in Ontario, Canada, from January 2007 to December 2015 were identified. Propensity score matching was used to pair ESAS-screened individuals to those not screened. Pairs were also hard matched on a pre-diagnosis psychiatric care utilization gradient. A multivariable Cox proportional hazards regression model was implemented to estimate the association between ESAS and mortality, for each intensity level of pre-diagnosis psychiatric care. RESULTS: The matched cohort consisted of 119,806 patient pairs (ESAS-screened and not screened), of whom 54,468 (45.5%) pairs had prior outpatient psychiatric care and 2249 (1.8%) pairs had experienced emergency department visits or had been hospitalized for psychiatric care. Overall being exposed to ESAS was significantly associated with a 51% decrease in the hazard of mortality (HR 0.49, 95%CI 0.48-0.50, p-value <0.0001). This association was similar across all levels of prior psychiatric use, however, there was no evidence of a differential impact. CONCLUSION: In addition to routinely monitoring symptom severity, including depression, among patients with cancer, it is also important to identify those with preexisting psychiatric comorbidities at the time of diagnosis. This information can be used to ensure that timely and appropriate psycho-oncology services and psycho-social supports are offered to help the patient and their family cope during the cancer disease trajectory.

Exploring the clinical meaningfulness of the Scale for the Assessment and Rating of Ataxia: A comparison of patient and physician perspectives at the item level.

BACKGROUND: The Scale for the Assessment and Rating of Ataxia (SARA) is commonly used as the primary outcome measure in therapeutic trials. Driven by spontaneous comments from ataxia patients participating in a trial, we aimed to examine the clinical meaningfulness of the SARA from their perspective. METHODS: Twenty mildly to moderately affected individuals with spinocerebellar ataxia type 3 (SARA score 11.3 ± 4.1) completed a custom-designed survey. SARA item scores were compared with self-reported complaints in everyday life. Discrepancies between SARA ratings and patients' daily life experiences were reported as "overestimation" (i.e., a SARA item score more than 0, but no corresponding complaints) or "underestimation" (i.e., a SARA item score of 0, yet accompanying complaints). RESULTS: Patient-physician discrepancies were present in essentially all SARA items except for gait. The mean number of overestimated SARA points per patient was 3.1 ± 2.1. Underestimation occurred less frequently, but was relatively common in stance and fast alternating hand movements. Three quarters of patients marked gait as the most valuable SARA item, while the remaining 25% selected stance. CONCLUSION: On average, a quarter of total SARA score does not reflect meaningful impairments from a patient's perspective. Our data suggest that it is doubtful whether potential improvements at some of the items will be perceived as comparably important by mildly to moderately affected ataxia patients. These observations question the utility of delta SARA score as the most appropriate primary endpoint in clinical trials and call for the addition of outcome measures, such as the Patient Global Impression of Change scale and validated ataxia-specific patient-reported outcome measures.

Podiatrists' views and experiences of using real time clinical gait analysis in the assessment and treatment of posterior tibial tendon dysfunction.

BACKGROUND: Real time clinical gait analysis (RTCGA) is often incorporated as part of a general or lower limb musculoskeletal (MSK) adult patient assessment. However, it is not known if RTCGA is clinically effective as a useful outcome measure or aids in decision making. Whether there is a clinical worth in conducting RTCGA in adult MSK consultations remains controversial. The aim of this study was to provide unique insights into MSK podiatrists use and opinions of RTCGA, using Posterior Tibial Tendon Dysfunction (PTTD) as an exemplar adult condition. METHODS: A qualitative approach was employed to explore MSK podiatrists' views and experiences of RTCGA when assessing or treating patients with PTTD. Semi-structured interviews were conducted via Skype video calls which were transcribed using an orthographic transcription method. Thematic analysis was employed to identify key meanings and report patterns within the data. RESULTS: Twenty nine MSK podiatrists who used RTCGA in the assessment and treatment of PTTD participated in the study. Five themes were identified as 1) RTCGA Method; 2) Working with RTCGA; 3) RTCGA uses; 4) What could aid RTCGA; 5) How RTCGA skills are acquired. This is the first known study to explore this topic of relevance to clinicians and researchers alike. Clinical observations were not only kinematic, but also included patient perceived experiences such as pain and orthotic comfort with normative kinematic reference values not perceived as important to that management goal. The most common barefoot RTCGA observations performed were the rearfoot to leg angle, medial bulge, forefoot abduction and arch integrity. However, a high amount of variation in many gait observations was noted between participants. Documentation methods also varied with a four-point scale system to grade motion and position most often employed and RTCGA was most often learnt through experience. The main barriers to performing RTCGA were clinical time and space restrictions. CONCLUSION: Findings from this study have provided a view of how podiatry MSK clinicians utilise RTCGA within their practice. MSK podiatrists use RTCGA as both an outcome measure and as an aid in decision making. This implies a perceived worth in conducting RTCGA, however further work is recommended that focusses on development of a national guideline to RTCGA to be adopted.

Patients Undergoing Ileoanal Pouch Surgery Experience a Constellation of Symptoms and Consequences Representing a Unique Syndrome: A Report from the Patient-Reported Outcomes After Pouch Surgery (PROPS) Delphi Consensus Study.

BACKGROUND: Functional outcomes after ileoanal pouch creation have been studied; however, there is great variability in how relevant outcomes are defined and reported. More importantly, the perspective of patients has not been represented in deciding which outcomes should be the focus of research. OBJECTIVE: The primary aim was to create a patient-centered definition of core symptoms that should be included in future studies of pouch function. DESIGN: This was a Delphi consensus study. SETTING: Three rounds of surveys were used to select high-priority items. Survey voting was followed by a series of online patient consultation meetings used to clarify voting trends. A final online consensus meeting with representation from all 3 expert panels was held to finalize a consensus statement. PATIENTS: Expert stakeholders were chosen to correlate with the clinical scenario of the multidisciplinary team that cares for pouch patients, including patients, colorectal surgeons, and gastroenterologists or other clinicians. MAIN OUTCOME MEASURES: A consensus statement was the main outcome. RESULTS: patients, 62 colorectal surgeons, and 48 gastroenterologists or nurse specialists completed all 3 Delphi rounds. Fifty-three patients participated in online focus groups. One hundred sixty-one stakeholders participated in the final consensus meeting. On conclusion of the consensus meeting, 7 bowel symptoms and 7 consequences of undergoing ileoanal pouch surgery were included in the final consensus statement. LIMITATIONS: The study was limited by online recruitment bias. CONCLUSIONS: This study is the first to identify key functional outcomes after pouch surgery with direct input from a large panel of ileoanal pouch patients. The inclusion of patients in all stages of the consensus process allowed for a true patient-centered approach in defining the core domains that should be focused on in future studies of pouch function. See Video Abstract at http://links.lww.com/DCR/B571. LOS PACIENTES SOMETIDOS A CIRUGA DE RESERVORIO ILEOANAL EXPERIMENTAN UNA CONSTELACIN DE SNTOMAS Y CONSECUENCIAS QUE REPRESENTAN UN SNDROME UNICO: Un Informe de los Resultados Reportados por los Pacientes Posterior a la Cirugía de Reservorio (PROPS) Estudio de Consenso DelphiANTECEDENTES:Los resultados funcionales después de la creación del reservorio ileoanal han sido estudiados; sin embargo, existe una gran variabilidad en la forma en que se definen y reportan los resultados relevantes. Más importante aún, la perspectiva de los pacientes no se ha representado a la hora de decidir qué resultados deberían ser el foco de investigación.OBJETIVO:El objetivo principal era crear en el paciente una definición centrada de los síntomas principales que debería incluirse en los estudios futuros de la función del reservorio.DISEÑO:Estudio de consenso Delphi.ENTORNO CLINICO:Se emplearon tres rondas de encuestas para seleccionar elementos de alta prioridad. La votación de la encuesta fue seguida por una serie de reuniones de consulta de pacientes en línea que se utilizan para aclarar las tendencias de votación. Se realizo una reunión de consenso final en línea con representación de los tres paneles de expertos para finalizar una declaración de consenso.PACIENTES:Se eligieron partes interesadas expertas para correlacionar con el escenario clínico del equipo multidisciplinario que atiende a los pacientes con reservorio: pacientes, cirujanos colorrectales, gastroenterólogos / otros médicos.PRINCIPALES MEDIDAS DE VALORACION:Declaración de consenso.RESULTADOS:Ciento noventa y cinco pacientes, 62 cirujanos colorrectales y 48 gastroenterólogos / enfermeras especialistas completaron las tres rondas Delphi. 53 pacientes participaron en grupos focales en línea. 161 interesados participaron en la reunión de consenso final. Al concluir la reunión de consenso, siete síntomas intestinales y siete consecuencias de someterse a una cirugía de reservorio ileoanal se incluyeron en la declaración de consenso final.LIMITACIONES:Sesgo de reclutamiento en línea.CONCLUSIONES:Este estudio es el primero en identificar resultados funcionales claves después de la cirugía de reservorio con información directa de un gran panel de pacientes con reservorio ileoanal. La inclusión de pacientes en todas las etapas del proceso de consenso permitió un verdadero enfoque centrado en el paciente para definir los dominios principales en los que debería centrarse los estudios futuros de la función del reservorio. Consulte Video Resumen en http://links.lww.com/DCR/B571.

Relationship between symptoms and both stage of change in adopting a healthy life style and quality of life in patients with liver cirrhosis: a cross-sectional study.

BACKGROUND: Previous studies of patients with liver cirrhosis have not considered the broad range of symptoms or the association between healthy behavior and quality of life. The purposes of this study were to examine the association between symptoms and adopting exercise and consuming fruits and vegetables and to identify factors associated with quality of life in patients with liver cirrhosis. METHODS: This cross-sectional study enrolled 91 consecutive patients with liver cirrhosis in one tertiary general hospital in South Korea between February 2016 and January 2017. Each study participant completed a self-administered questionnaire that measured symptom, stage of change in engaging in exercise and consumption of fruits and vegetables, and the Korean version of the 36-item Short-Form Health Survey. Multivariate ordinal logistic regression analysis and multiple regression models was used, respectively, to examine the association between each symptom with stage of change in engaging in exercise and consumption of fruits and vegetables and to evaluate factors affecting quality of life. RESULTS: Experiencing nausea was associated with more readiness for change in engaging in exercise, but experiencing shortness of breath was associated with less readiness for change in engaging in exercise. Experiencing right upper quadrant pain was associated with more readiness for change in engaging in consumption of fruits and vegetables. Muscle cramps, anorexia, right upper quadrant pain and body pain, itching, ascites or edema, bruising, and change in appearance negatively affected quality of life. CONCLUSIONS: The results suggest that the types of symptoms experienced by a patient with liver cirrhosis hinder or promote the patient's adoption of exercise and dietary behavior. Experiencing symptoms may negatively affect quality of life. Caregivers should provide supportive care to patients with liver cirrhosis, which includes assessing and managing symptoms to improve quality of life.

Patient and GP experiences of pathways to diagnosis of a second primary cancer: a qualitative study.

BACKGROUND: More people are surviving a first primary cancer and experiencing a second, different cancer. However, little is known about the diagnostic journeys of patients with second primary cancer (SPC). This study explores the views of patients and general practitioners (GPs) on their experiences of pathways to diagnosis of SPC, including the influence of a previous diagnosis of cancer on symptom appraisal, help-seeking and referral decisions. METHODS: Qualitative interviews with patients with a SPC diagnosis and case-linked GP interviews in a Scottish primary care setting. In-depth face to face or telephone interviews were conducted, underpinned by a social constructionist approach. Interviews were transcribed and Braun and Clarke's thematic analysis undertaken. Three analysts from the research team read transcripts and developed the coding framework using QSR NVivo version 10, with input from a fourth researcher. Themes were developed from refined codes and interpreted in the context of existing literature and theory. RESULTS: Interviews were conducted with 23 patients (aged 43-84 years) with a SPC diagnosis, and 7 GPs. Five patient themes were identified: Awareness of SPC, symptom appraisal and help-seeking, pathways to diagnosis, navigating the healthcare system, and impact of SPC. GPs interviews identified: experience and knowledge of SPC and referrals and decision-making. CONCLUSIONS: Insights into the pathway to diagnosis of SPC highlights the need for increased awareness of and vigilance for SPC among patients and healthcare providers (HCPs), and emotional support to manage the psychosocial burden.

Gender differences in experience and reporting of acute symptoms among cleaning staff.

BACKGROUND: Cleaning tasks pose risks of hazardous chemical exposure and adverse health effects for cleaning workers. We examined gender differences among cleaning staff in the experience of chemical-related symptoms and in reporting to supervisors. METHODS: We analyzed cross-sectional reports from 171 university hospital or campus cleaning staff on chemical exposures to cleaning products, experience of acute symptoms, reporting of symptoms to supervisors, as well as demographic and psychosocial factors (risk perception, job demand/control, supervisor/co-worker support, and safety climate). Results were analized using multivariable logistic regression, adjusting for demographic, job, and psychosocial factors. Interactions of gender and psychosocial variables were also examined. RESULTS: Men and women reported different frequencies for exposure-related tasks. Acute symptoms of chemical exposure were more prevalent in women compared with men (46.0% vs. 25.4%; adjusted odds ratio [OR] = 2.63; 95% confidence interval [CI] 1.27-5.46). Women were more concerned about exposure to cleaning chemicals (p = 0.029) but reported symptoms to their supervisor less often than men (18.5% vs. 40.6%, adjusted OR = 0.28; 95% CI 0.09-0.93). More supervisor support was significantly associated with less frequent symptom experience among women (OR = 0.83; 95% CI 0.70-0.99). Asian workers and less educated workers were less likely than others to report symptoms to supervisors. Gender differences in symptom reporting to supervisors were not explained by psychosocial factors. CONCLUSIONS: Women may have increased susceptibility or perception of symptoms from cleaning compared to men, but this may be mitigated by supervisor support. Female Asian workers with lower education may perceive more significant barriers in reporting work-related symptoms to supervisors. Further research is needed to explore factors related to underreporting.

The patient perspective in the era of personalized medicine: What about scanxiety?

Frequency of scanning has accelerated in the era of personalized medicine and is related, but not restricted, to the exploding number of clinical trials for new cancer treatments. Particularly in drug trials, but also in clinical practice, patients are followed up by scans frequently, which may vary from every 6 to 12 weeks until progression. The authors aimed to raise awareness for this underreported but widely present "Sword of Damocles" scan-related issue also referred to as 'scanxiety.'

Nursing work in the COVID-19 pandemic and repercussions for workers' mental health.

OBJECTIVE: To reflect about the work context of nursing professionals in the COVID-19 pandemic and the repercussions for these professionals' mental health. METHOD: This is a theoretical reflective study with two thematic axes: i) Pandemic by COVID-19: epidemiological condition, manifestations, and preventive measures; ii) Precariousness of work in times of pandemic and impacts on the worker's mental health. RESULTS: The COVID-19 pandemic made explicit the reflects of precariousness in the health sector. For example, the psychological suffering of nursing workers was evidenced due to the scarcity of personal protective equipment, the weakness in the description of the protocols and the flows for the effective control of infections, the long working hours, the inadequate professional training for crisis scenario and uncertainty in relation to therapeutic measures. CONCLUSION: The present article brings to light the aggravation of a scenario that raises the potential for negative impact on the mental health of nursing workers.

Factors affecting anxiety and depression in young breast cancer survivors undergoing radiotherapy.

PURPOSE: This study examined anxiety and depression, and their relationship with symptom assessment, uncertainty, social support, and stress in young breast cancer patients receiving radiotherapy. METHODS: This is a descriptive quantitative study. The participants were 126 patients under 50 years of age with breast cancer undergoing radiotherapy. RESULTS: The anxiety and depression levels were higher among those who were married (t = -2.318, p = .022), non-religious (t = 4.510, p = .005), and had a higher monthly income (F = 2.840, p = .041). The hierarchical regression analysis model included symptom assessment, uncertainty, social support, and stress, and accounted for about 49% of the variance in anxiety and depression (F = 7.688, p < .001). Additionally, uncertainty (ß = 0.304, p = .001) and stress (ß = 0.308, p = .001) were significant predictors of anxiety and depression. CONCLUSIONS: Based on the results of this study, nursing interventions are needed to reduce uncertainty and stress in order to reduce anxiety and depression in young breast cancer patients undergoing radiation treatment.

Patients' and clinicians' perspectives on item importance, scoring, and clinically meaningful differences for the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS).

BACKGROUND: The Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS) are patient-reported outcome measures developed to evaluate efficacy in clinical trials and clinical practice. The ESD is a daily electronic diary assessing symptom severity; the EIS is a weekly electronic diary assessing symptom impact. This study explored the importance of symptoms (ESD items) and impacts (EIS domains), perspectives on scoring algorithms, and clinically important difference (CID) thresholds to inform clinical trial score interpretation. METHODS: Endometriosis patients in Germany (n = 8) and the US (n = 17), and expert clinicians (n = 4) in Germany, the US, Spain, and Finland participated in semi-structured qualitative interviews comprising structured tasks. Interview transcripts were analyzed using thematic analysis techniques. RESULTS: Quality and severity of endometriosis-associated pelvic pain varied considerably among patients; some experienced pelvic pain daily, others during menstrual bleeding (dysmenorrhea) only. Patients and clinicians ranked "worst pelvic pain" as the most meaningful pain concept assessed by the ESD, followed by constant and short-term pelvic pain. Preferences for summarizing daily pain scores over the 28-day menstrual cycle depended on individuals' experience of pain: patients experiencing pain daily preferred scores summarizing data for all 28 days; patients primarily experiencing pain during selected days, and their treating clinicians preferred scores based on the most severe pain days. Initial CID exploration for the "worst pelvic pain" 0-10 numerical rating scale (0-10 NRS) revealed that, for most patients, a 2- or 3-point reduction was considered meaningful, depending on baseline severity. Patients and clinicians ranked "emotional well-being" and "limitations in physical activities" as the most important EIS domains. CONCLUSIONS: This study informs the use of the ESD and EIS as clinically relevant measures of endometriosis symptoms and their impact. Findings from the ESD highlight the importance of individual-patient assessment of pain experience and identify "worst pelvic pain" as the most meaningful symptom assessed. Aggregating scores over the 28-day menstrual cycle may inform meaningful endpoints for clinical trials. Diverse EIS concepts (e.g. impact on emotional well-being and physical activities) are meaningful to patients and clinicians, emphasizing the importance of evaluating the impact on both to comprehensively assess treatment efficacy and decisions. TRIAL REGISTRATION: Not applicable. Qualitative, non-interventional study; registration not required.

The psychological symptoms of patients with mild symptoms of coronavirus disease (2019) in China: A cross-sectional study.

AIMS: To determine psychological symptoms of patients with mild symptoms of coronavirus disease 2019 in China and to explore the influencing factors. DESIGN: A cross-sectional study. METHODS: A convenience sample of 296 mild coronavirus disease 2019 patients were recruited from a Fangcang hospital in Wuhan, Hubei Province, from 3-5 March, 2020. Participants were assessed using a sociodemographic and clinical characteristics questionnaire, and Symptom Check List 90. The binary logistic regression was utilized to explore the influencing factors of psychological symptoms of patients with mild symptoms of coronavirus disease 2019. RESULTS: In total, 296 of 299 patients with mild symptoms of coronavirus disease 2019 participated in the study (response rate: 99.0%). The findings revealed that 12.8% patients with mild symptoms have mental health problems; the most common psychological symptoms are phobic anxiety (58.4%), paranoid ideation (50.7%) and psychoticism (40.2%). Female patients [OR = 3.587, 95% CI (1.694-7.598)] and those having physical symptoms currently [OR = 2.813, 95% CI (1.210-6.539)] are at higher risk, while those in the middle duration of hospitalization [OR = 0.278, 95% CI (0.121-0.639)] protect against mental-health problems. CONCLUSIONS: The minority of patients with mild symptoms of coronavirus disease 2019 were still suffering from psychological symptoms. Healthcare providers are recommended to pay particular attention to screening these high-risk groups (women, those in the initial stages of hospitalization and those with physical symptoms currently) and implement targeted psychological care as required. IMPACT: This study found that most patients of coronavirus disease 2019 in Fangcang hospital exhibited normal mental health at par with the general Chinese norm and the minority of them were suffering from psychological symptoms. The findings can provide a reference for healthcare providers to screen high-risk psychological symptoms groups and implement targeted psychological intervention for patients with coronavirus disease 2019.

Use of PROMIS® to screen for depression in children with arthritis.

BACKGROUND: Children with JIA may experience difficulty with health related quality of life (HRQOL). The Patient Reported Outcomes Measurement Information System (PROMIS) a patient related outcome (PRO) measure, covers HRQOL domains that include physical function, mental health, and social interactions. During initial use, we found PROMIS identified children with symptoms of depression, sometimes before they shared those feelings with parents or members of the clinic team. We studied the use of PROMIS for this purpose, and to determine what demographic, clinical, and other characteristics might be related to higher depressive symptom scores. METHODS: From March 2014 - February 2017, at each visit, all JIA patients having met ILAR classification criteria seen by M.L.M. received the PROMIS Short Form 35 v.1.0, as part of routine care. T scores were calculated from raw scores for mobility, anxiety, depressive symptoms, fatigue, peer relationships, and pain interference domains. Data extracted by optical mark recognition software were merged with electronic medical record (EMR data), extracted by Extract/Transform/Load software, including joint counts, visit age, ANA, RF, and HLA-B27 status. Mixed effects models were used to identify significant associations of independent variables with depression T scores. RESULTS: Data from 148 patients were analyzed (114 females for 435 visits, 34 males for 118 visits; 13.8 ± 2.8 years): 70 persistent oligoarthritis, 9 extended oligoarthritis, 19 ERA, 21 polyarthritis (RF-), 5 polyarthritis (RF+), 11 undifferentiated arthritis, 3 psoriatic arthritis, 10 systemic arthritis). T scores showed wide ranges within individual JIA categories, with similar mean scores for all groups. Univariate linear mixed effects models showed significant relationships to depression T scores of gender and race (males and Asian patients with lower T scores, p < .0001, p = 0.091, respectively), joint count (p = 0.002), pain interference score (p = 0.0004), and Patient and Physician Global Assessment (p = 0.004, p < .0001, respectively). No particular JIA category was associated with Depression T scores. HRQOL domains were interrelated (p < .0001), including patients reporting symptoms of depression tending also to report symptoms of anxiety. PROMIS identified 15 patients who did not otherwise report depressive symptoms, but needed referral for counseling; eight did not endorse depressive symptoms until the 2nd or 3rd visit. Only 3 patients had disease flare. Concerns besides arthritis such as parental conflict or school bullying were elicited in 7 patients during interviews with the social worker. All patients expressed being worried about their arthritis. CONCLUSION: PROMIS is useful in screening JIA patients for symptoms of depression, particularly to identify patients who might not otherwise report these symptoms. The other PROMIS domain scores are related to reporting of symptoms of depression, as is Patient and Physician Global Assessment. Future studies will use PROMIS questionnaires incorporated into the EMR, permitting data entry by tablets and an online patient portal. This will make possible comparisons of HRQOL in children with JIA to those with other chronic rheumatic and non-rheumatic diseases.

Expanding Stroke Preparedness to Vulnerable Populations: A Music Video for the Deaf Community.

Background Acute stroke treatments reduce disability after stroke, but eligibility for these treatments depends on rapid hospital arrival after symptom onset. Stroke preparedness interventions teach stroke symptoms and the importance of calling 911, thereby increasing patient eligibility for stroke treatments. Stroke preparedness interventions for the Deaf community are lacking. We sought to adapt a stroke preparedness music video, which was initially created for the hearing, for the Deaf community. Methods and Results We used a community-engaged approach, partnering with members of the Deaf community, to adapt the video over 4 months. Adaptation involved assessing the comprehensibility and appropriateness of the video and interpreting the song lyrics into American Sign Language. Conclusions We collaborated with the Deaf community to create a stroke preparedness video for the Deaf. Future research will involve refining the video and testing its efficacy to increase stroke symptom recognition and intent to call 911.

Prioritizing care for women with breast cancer based on survival stage: A study examining the association between physical symptoms, psychological distress and unmet needs.

PURPOSE: 1) To examine the differences in physical symptoms, psychological distress and unmet needs between short-term (2-5 years) and long-term (>5 years) breast cancer survivors (BCSs). 2) To explore how physical symptoms and psychological distress impact unmet needs among women in different survival stages. METHOD: Three hundred forty-nine people with breast cancer completed questionnaires. Short-term (2-5 years) and long-term (>5 years) survival stages were examined. Physical symptoms (number of physical symptoms); psychological distress, including fear of recurrence (FOR) (FOR visual analogue scale (VAS)) and depressive symptoms (Center for Epidemiological Studies-Depression Scale); and unmet needs (Chinese Cancer Survivors' Unmet Needs scale) were measured. Structural equation modelling with multi-group analysis was used to assess differences between short- and long-term survivors in the magnitude of paths. RESULTS: In total, 157 women who had survived <5 years and 192 women who had survived >5 years were recruited. The path coefficients from physical and depressive symptoms to unmet needs were similar between short-term BCSs and long-term BCSs (p > .05). However, the path coefficient from FOR to unmet needs among women who had survived for >5 years was significantly greater than that among those who had survived <5 years (p < .001). CONCLUSION: Based on these results, health care professionals should be aware of the FOR that women experience even 5 years after their initial diagnosis. Providing survivorship care plans with comprehensive side effect-related information soon after treatment is recommended.

Cough reflex testing in acute stroke: A survey of current UK service provision and speech and language therapist perceptions.

BACKGROUND: Silent aspiration (SA)-airway entry of food, drink or other material without a cough response-is common post-stroke. Clinical swallowing examination misses up to 40% of dysphagic patients with SA. This may put these patients at risk of aspiration pneumonia, prolonged length of hospital stay and increased healthcare costs. After stroke, the laryngeal cough reflex is frequently impaired with significant relationships between pneumonia rates and reduced cough strength and sensitivity. There has been a significant amount of recent interest in cough reflex testing (CRT) as a potential means to improve clinical identification of patients at risk of SA. However, there is a lack of consensus regarding the methodology and protocols for use of CRT with widely varying outcomes reported in the literature. AIMS: To provide an overview of current practice in the UK with regards to clinical use of CRT by speech and language therapists (SLTs) in acute stroke settings and to explore the perceptions regarding its potential application in clinical dysphagia management and the barriers and facilitators associated with adopting CRT in clinical practice. METHODS & PROCEDURES: A cross-sectional web-based survey was developed, piloted and delivered. The survey targeted all UK-based SLTs working in acute stroke settings. OUTCOMES & RESULTS: A total of 129 SLTs with varying levels of experience of CRT from all regions of the UK responded. Only four SLT services in the UK were reported to be currently using CRT clinically with acute stroke patients. A total of 29% of respondents who were not using CRT were considering introducing CRT into their service's dysphagia protocol. Variation was reported in the procedures and protocols. Overall, users reported improved confidence in the clinical detection of SA and felt that the introduction of CRT had improved their patient-related outcomes. Issues included difficulties procuring citric acid, implications for SLT time (including service set-up and delivery of CRT) and restricted access to instrumental assessments. CONCLUSIONS & IMPLICATIONS: This survey gives valuable insight into the current practice and perceptions of SLTs in the UK working in acute stroke settings in relation to CRT. It highlights discrepancies between reported approaches and recommendations from existing guidelines and validation studies. The variation in responses indicates a need to develop a consensus statement and further research to guide practice. What this study adds What is already known on the subject CRT is gaining popularity as a screening tool for the clinical identification of SA with acute stroke patients. However, there is a lack of consensus in the literature regarding the methodology and protocols with widely varying outcomes. Further work needs to be done to standardize its use, especially if it is to be incorporated into dysphagia protocols for use in the acute stroke setting. What this paper adds to existing knowledge This survey of SLTs working in acute stroke settings highlights variability in practice in CRT service delivery in the UK, reflecting findings from the existing CRT literature. What are the potential or actual clinical implications of this work? The findings of this study support the need for further research relating to clinical screening tests for SA and standardization of methodology and protocols for CRT use if its use is to be continued clinically.