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.

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.

Interrelationships between symptom burden and health functioning and health care utilization among veterans with persistent physical symptoms.

BACKGROUND: Between 10 and 50% of primary care patients present with persistent physical symptoms (PPS). Patients with PPS tend to utilize excessive or inappropriate health care services, while being stuck in a deleterious cycle of inactivity, deconditioning, and further worsening of symptoms and disability. Since military deployment (relative to non-deployment) is associated with greater likelihood of PPS, we examined the interrelationships of health care utilization, symptom burden and functioning among a sample of recently deployed Veterans with new onset persistent physical symptoms. METHODS: This study analyzed a cohort of 790 U.S. soldiers who recently returned from deployment to Iraq or Afghanistan. Data for this analysis were obtained at pre- and post-deployment. We used moderation analyses to evaluate interactions between physical symptom burden and physical and mental health functioning and four types of health care utilization one-year after deployment, after adjusting for key baseline measures. RESULTS: Moderation analyses revealed significant triple interactions between physical symptom burden and health functioning and: primary care (F = 3.63 [2, 303], R2Δ = .02, p = 0.03), specialty care (F = 6.81 [2, 303] R2Δ =0.03, p < .001), allied therapy care (F = 3.76 [2, 302], R2Δ = .02, p = 0.02), but not mental health care (F = 1.82 [1, 303], R2Δ = .01, p = .16), one-year after deployment. CONCLUSIONS: Among U.S. Veterans with newly emerging persistent physical symptoms one-year after deployment, increased physical symptom burden coupled with decreased physical and increased mental health functioning was associated with increased medical care use in the year after deployment. These findings support whole health initiatives aimed at improving health function/well-being, rather than merely symptom alleviation.

Divergent Perspectives on the Use of the Edmonton Symptom Assessment System (Revised) in Palliative Care.

The Edmonton Symptom Assessment System (Revised) (ESAS-r) contains 9 questions pertaining to symptoms/well-being. It is a standardized patient-reported assessment instrument, but inconsistently used in palliative care. Thus, a problem exists in knowledge translation regarding routine use of the ESAS-r in palliative practice. The objective was to understand clinicians' perspectives on the use of the ESAS-r in palliative care in hospitals and at home. Qualitative focus groups (n = 14 with 46 clinicians) and interviews (n = 24) elicited views regarding use of the ESAS-r in palliative practice. Interpretive description was used as a general approach to this qualitative analysis focused on understanding clinicians' views. Palliative clinicians presented multiple perspectives of the ESAS-r pertaining to their (1) underlying values, (2) disparate purposes, and (3) incommensurate responses toward use in daily practice. Benefits and challenges supported diversity within these themes, highlighting divergence among perspectives and complexity of integrating a standardized tool in patient care. Integration of the ESAS-r in palliative care requires (1) educational support for developing competence; (2) consideration of clinicians' existing, heterogeneous beliefs regarding the use of standardized assessment instruments; and (3) Consultation with multidisciplinary practitioners about optimal ways that ESAS-r results can be used in a person-centered approach to palliative care.

Perception of asthma control among asthmatics seen inChest Clinic at Tertiary Hospital, Addis Ababa, Ethiopia.

BACKGROUND: Patient awareness of asthma severity is important for optimal asthma management. However, there is often a discrepancy between physician assessment of asthma control based on guidelines and patient discernment of control. We compared physician and patient perception of asthma control in a clinic population seen at a tertiary hospital in Addis Ababa, Ethiopia. METHODS: In this cross-sectional study, 182 consecutive patients with a physician diagnosis of asthma seen in Chest Clinic at Tikur Anbessa Specialized Hospital (TASH) between July and December 2015 were studied. Demographics, asthma symptoms, medication use in the past month, and self-perception of asthma control in the past 7 days were obtained from the clinic records. Physician assessed asthma control was based on the GINA asthma symptom control assessment tool. Lung function was measured using a Diagnostic EasyOne Plus model 2001 SN spirometer. The institutional review board approved the study protocol. RESULTS: Of the 182 subjects, 68.1% were female. The mean age was 52 ± 12 years, and the mean (SD) duration of asthma was 19.4 ± 12.7 years. Forty-four (24.2%) patients had physician determined well-controlled asthma and 138 (75.8%) patients had physician determined partly controlled/uncontrolled asthma. One hundred and fifty-one (83%) patients thought their asthma control was good. However, the degree of concordance between physician evaluation and patient perception of asthma control was low (kappa index = 0.09). On multivariate analysis, self-perceived poor asthma control was associated with any activity limitation due to asthma and inconsistent inhaled corticosteroid use. CONCLUSION: In our study, the first of its kind in Ethiopia, a high percent of patients with physician determined well-controlled asthma has appropriate perception of their disease state. However, those patients with partly controlled/uncontrolled asthma had poor self-perception of their disease, emphasizing the need for further patient education. These conclusions may be especially useful in the care of asthmatics from other low-income countries.

A symptom-based continuum of psychosis explains cognitive and real-world functional deficits better than traditional diagnoses.

BACKGROUND: Patients with psychotic spectrum disorders share overlapping clinical/biological features, making it often difficult to separate them into a discrete nosology (i.e., Diagnostic and Statistical Manual of Mental Disorders [DSM]). METHODS: The current study investigated whether a continuum classification scheme based on symptom burden would improve conceptualizations for cognitive and real-world dysfunction relative to traditional DSM nosology. Two independent samples (New Mexico [NM] and Bipolar and Schizophrenia Network on Intermediate Phenotypes [B-SNIP]) of patients with schizophrenia (NM: N = 93; B-SNIP: N = 236), bipolar disorder Type I (NM: N = 42; B-SNIP: N = 195) or schizoaffective disorder (NM: N = 15; B-SNIP: N = 148) and matched healthy controls (NM: N = 64; B-SNIP: N = 717) were examined. Linear regressions examined how variance differed as a function of classification scheme (DSM diagnosis, negative and positive symptom burden, or a three-cluster solution based on symptom burden). RESULTS: Symptom-based classification schemes (continuous and clustered) accounted for a significantly larger portion of captured variance of real-world functioning relative to DSM diagnoses across both samples. The symptom-based classification schemes accounted for large percentages of variance for general cognitive ability and cognitive domains in the NM sample. However, in the B-SNIP sample, symptom-based classification schemes accounted for roughly equivalent variance as DSM diagnoses. A potential mediating variable across samples was the strength of the relationship between negative symptoms and impaired cognition. CONCLUSIONS: Current results support suggestions that a continuum perspective of psychopathology may be more powerful for explaining real-world functioning than the DSM diagnostic nosology, whereas results for cognitive dysfunction were sample dependent.

Percepción de carga de la enfermedad en la persona con enfermedad crónica / Percepção de carga da doença na pessoa com doença crónica / Perception of cost of illness among chronically ill people

RESUMEN Objetivo: Describir el perfil y la Percepción de carga de la enfermedad en personas con enfermedad crónica e identificar correlaciones entre la Percepción de carga reportada y las variables sociodemográficas y de cuidado de la persona. Material y Método: Estudio cuantitativo, descriptivo correlacional de corte transversal realizado con una muestra de 240 personas con enfermedad crónica en tres instituciones de salud. Se midió la Percepción de carga de la enfermedad con el instrumento Carga de la Enfermedad Crónica para el Paciente GCPC-UN y las variables sociodemográficas de los participantes con una encuesta de caracterización. Para el análisis de los datos se usó estadística descriptiva y para identificar las correlaciones se usó el estadístico Rho de Spearman. Resultados: Sobre la Percepción de carga se encontró que hay mayor impacto de la enfermedad en el Disconfort físico del paciente, seguido del impacto en los Aspectos socioculturales y familiares y, finalmente, en el Sufrimiento emocional y espiritual. La Percepción de carga de la enfermedad se relacionó con la edad (r= -,173; p= 0,007), el tiempo con la enfermedad (r= -,182; p= 0,005) y el número de horas de cuidado diario (r= ,357; p= 0,000). Conclusión: Las personas con enfermedad crónica perciben carga por la enfermedad principalmente en lo relacionado con el Disconfort físico que esta genera. Existe una asociación entre la Percepción de carga de la enfermedad con variables sociodemográficas como la edad, el tiempo con la enfermedad y las horas de cuidado diario. En este caso los profesionales de la salud deben prestar atención a la atención integral de los pacientes con enfermedad crónica en todas sus dimensiones.

ABSTRACT Objective: To describe the profile and Perception of cost of illness among people with chronic disease and to identify the correlations between the reported cost and the socio-demographic and care variables of the patient. Material and Method: A quantitative, cross-sectional, descriptive, correlational study conducted with a sample of 240 people with chronic disease in three healthcare institutions. The Cost of illness perception was measured using the instrument Chronic Disease Burden for the Patient GCPC-UN and a characterization survey for the socio-demographic variables of the participants. For the data analysis, descriptive statistics were used and the Spearman's Rho to identify correlations. Results: Regarding perception of cost, it was found that there is a greater impact on the disease in the Physical discomfort of the patient, followed by the impact on Sociocultural and family aspects and, finally, on Emotional and spiritual suffering. Cost of illness was related to age (r = -.173; p = 0.007), time with disease (r = -.182; p = 0.005) and the number of hours of daily care (r = .357; p = 0.000). Conclusion: People with chronic disease show Cost of illness mainly related to the Physical discomfort that it generates. There is a relationship between Cost of illness and socio-demographic variables such as age, time with disease and hours of daily care. Healthcare professionals should thus pay attention to the comprehensive care of patients with chronic disease in all its dimensions.

RESUMO Objetivo: Descrever o perfil e a Percepção de carga da doença em pessoas com doença crónica e identificar a correlação entre os efeitos reportados e as variáveis sociodemográficas e de cuidado das pessoas. Material e Método: Estudo quantitativo, descritivo correlacional, de corte transversal realizado com uma amostra de 240 pessoas com doença crónica, em três instituições de saúde. A Percepção de carga da doença foi medida com o instrumento Carga da Doença para o Paciente GCPC-UN e as variáveis sociodemográficas dos participantes com uma pesquisa de caracterização. Para analisar os dados foi utilizada a estadística descritiva e para identificar a correlação utilizou-se o estadístico de Rho de Spearman. Resultados: Em relação à Percepção de carga da doença, identificou-se que existe maior impacto na doença no Desconforto físico do paciente, seguido do impacto nos Aspectos socioculturais e familiares e, finalmente, no Sofrimento emocional e espiritual. A Percepção de carga da doença teve relação com idade (r= -,173; p= 0,007), tempo com a doença (r= -,182; p= 0,005) e o número de horas de cuidado por dia (r= ,357; p= 0,000). Conclusão: As pessoas com doença crónica apresentam Carga da doença relacionada, principalmente, com o Desconforto físico que produz. Existe uma relação entre a Percepção de carga da doença e as variáveis sociodemográficas como idade, tempo com a doença e horas de cuidado por dia. Os profissionais da saúde, neste caso, devem prestar atenção ao cuidado integral dos pacientes com doença crónica em todas suas dimensões.

The CF-CARES primary palliative care model: A CF-specific structured assessment of symptoms, distress, and coping.

BACKGROUND: Current palliative care tools do not address distressing chronic symptoms that are most relevant to cystic fibrosis. METHODS: A CF-specific structured assessment based on a primary palliative care framework was administered to 41 adolescents and adults with CF. Descriptive and correlational analyses were conducted. RESULTS: Patients reported numerous physical and psychological symptoms (mean of 10 per patient), with psychological symptoms rated as more distressing. Anxiety (34%) and depression (44%) were prevalent and correlated with distress attributable to physical symptoms and difficulty with CF self-management, but did not correlate with disease severity. CONCLUSIONS: Individuals with CF, regardless of disease severity, face challenges managing symptom burden. Frequently reported symptoms are not consistently associated with distress, suggesting the importance of individualized evaluation. The CF-CARES (Coping, goal Assessment, and Relief from Evolving CF Symptoms) primary palliative care assessment model provides a framework for patients experiencing chronic symptoms to explore interventional options with their clinicians.

Promoting mental health recovery and improving clinical assessment using video technology.

TOPIC: Although individuals with medical problems (e.g., diabetes, hypertension) can monitor their symptoms using objective measures (e.g., blood glucose, blood pressure), objective measures are not typically used by individuals with psychotic disorders to monitor symptoms of mental illness. PURPOSE: To examine the benefits and limitations of the use of video self-observation for treatment of individuals with psychotic disorders. SOURCES USED: The authors reviewed studies examining video self-observation among individuals with severe mental illnesses. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Individuals with psychotic disorders who viewed videos of themselves while symptomatic reported some benefit to this approach, with 1 study showing sustained improvement in understanding of mental illness. Still, some individuals reported negative feelings about the process, and also attributed symptoms to stress or drug abuse rather than their psychotic disorder. The authors found no studies examining the potential for video self-observation as a strategy to improve clinical decision-making in the context of mental health care. Implications of this approach for mental health recovery and clinical practice are discussed. (PsycINFO Database Record

[Use of the Symptom Validation Test BEVA in Social Medical Assessment]. / Einsatz des Beschwerdenvalidierungstests BEVA in der sozialmedizinischen Begutachtung.

The present study investigates whether the BEVA is suitable to detect negative response bias by claimants with psychosomatic symptoms in the social medical assessment. 107 claimants for disability pension to a psychosomatic disorder fulfilled the BEVA, SIMS and a sociodemographic questionnaire. The social medical examiners assess the credibility of the complaints representation. A Known-Group-Design and a Bootstrapping-Design was used to estimate the validity of the BEVA. For the external criterion SFSS the following psychometric characteristics for the BEVA could be determined: specificity=0.86, sensitivity=0.42, positive predictive value=0.81, negative predictive value=0.51. The interrater reliability estimates with Cohen κ=0.253. If the expert's assessments are chosen as external criterion following psychometric characteristics were estimated: specificity=0.71, sensitivity=0.32, positive predictive value=0.38, negative predictive value=0.66. The rater agreement is Cohen κ=0.031. The results show that the BEVA has an excellent specificity in the detection of negative response bias. This is highly desirable in terms of an ethically moral discussion. Furthermore, the study shows that - in addition to the expert estimates - further screenings can improve the assessment of negative response bias.

Oncology Nurses' Attitudes Toward the Edmonton Symptom Assessment System: Results From a Large Cancer Care Ontario Study.

PURPOSE/OBJECTIVES: To examine oncology nurses' attitudes toward and reported use of the Edmonton Symptom Assessment System (ESAS) and to determine whether the length of work experience and presence of oncology certification are associated with their attitudes and reported usage.
. DESIGN: Exploratory, mixed-methods study employing a questionnaire approach.
. SETTING: 14 regional cancer centers (RCCs) in Ontario, Canada.
. SAMPLE: Oncology nurses who took part in a larger province-wide study that surveyed 960 interdisciplinary providers in oncology care settings at all of Ontario's 14 RCCs.
. METHODS: Oncology nurses' attitudes and use of ESAS were measured using a 21-item investigator-developed questionnaire. Descriptive statistics and Kendall's tau-b or tau-c test were used for data analyses. Qualitative responses were analyzed using content analysis.
. MAIN RESEARCH VARIABLES: Attitudes toward and self-reported use of standardized symptom screening and ESAS.
. FINDINGS: More than half of the participants agreed that ESAS improves symptom screening, most said they would encourage their patients to complete ESAS, and most felt that managing symptoms is within their scope of practice and clinical responsibilities. Qualitative comments provided additional information elucidating the quantitative responses. Statistical analyses revealed that oncology nurses who have 10 years or less of work experience were more likely to agree that the use of standardized, valid instruments to screen for and assess symptoms should be considered best practice, ESAS improves symptom screening, and ESAS enables them to better manage patients' symptoms. No statistically significant difference was found between oncology-certified RNs and noncertified RNs on attitudes or reported use of ESAS.
. CONCLUSIONS: Implementing a population-based symptom screening approach is a major undertaking. The current study found that oncology nurses recognize the value of standardized screening, as demonstrated by their attitudes toward ESAS.
. IMPLICATIONS FOR NURSING: Oncology nurses are integral to providing high-quality person-centered care. Using standardized approaches that enable patients to self-report symptoms and understanding barriers and enablers to optimal use of patient-reported outcome tools can improve the quality of patient care.

Using Search Engine Query Data to Explore the Epidemiology of Common Gastrointestinal Symptoms.

BACKGROUND: Internet searches are an increasingly used tool in medical research. To date, no studies have examined Google search data in relation to common gastrointestinal symptoms. AIMS: The aim of this study was to compare trends in Internet search volume with clinical datasets for common gastrointestinal symptoms. METHODS: Using Google Trends, we recorded relative changes in volume of searches related to dysphagia, vomiting, and diarrhea in the USA between January 2008 and January 2011. We queried the National Inpatient Sample (NIS) and the National Hospital Ambulatory Medical Care Survey (NHAMCS) during this time period and identified cases related to these symptoms. We assessed the correlation between Google Trends and these two clinical datasets, as well as examined seasonal variation trends. RESULTS: Changes to Google search volume for all three symptoms correlated significantly with changes to NIS output (dysphagia: r = 0.5, P = 0.002; diarrhea: r = 0.79, P < 0.001; vomiting: r = 0.76, P < 0.001). Both Google and NIS data showed that the prevalence of all three symptoms rose during the time period studied. On the other hand, the NHAMCS data trends during this time period did not correlate well with either the NIS or the Google data for any of the three symptoms studied. Both the NIS and Google data showed modest seasonal variation. CONCLUSIONS: Changes to the population burden of chronic GI symptoms may be tracked by monitoring changes to Google search engine query volume over time. These data demonstrate that the prevalence of common GI symptoms is rising over time.

Derivation and Validation of a Severity Scoring Method for the 3-Minute Diagnostic Interview for Confusion Assessment Method--Defined Delirium.

OBJECTIVES: To derive and validate a method for scoring delirium severity using a recently validated, brief, structured diagnostic interview for Confusion Assessment Method (CAM)-defined delirium (3D-CAM) and to demonstrate its agreement with the CAM Severity short form (CAM-S SF) as the reference standard. DESIGN: Derivation and validation analysis in a prospective cohort study. SETTING: Two academic medical centers. PARTICIPANTS: Individuals aged 70 and older enrolled in the Successful Aging after Elective Surgery Study undergoing major elective noncardiac surgery (N = 566). MEASUREMENTS: The sample was randomly divided into a derivation dataset (n = 377) and an independent validation dataset (n = 189). These datasets were used to develop a severity scoring method using the 3D-CAM based on the four-item CAM-S SF (3D-CAM-S) and evaluate agreement between the 3D-CAM-S and the traditional CAM-S SF using weighted kappa statistics. RESULTS: A method for scoring severity using 3D-CAM items was developed that achieved good agreement with the CAM-S SF in the derivation dataset (κ = 0.94, 95% confidence interval (CI) = 0.93-0.95). The 3D-CAM-S achieved nearly identical agreement in the independent validation dataset (κ = 0.93, 95% CI = 0.92-0.95), and 100% of 3D-CAM-S scores were within 1 point of the CAM-S SF score in both datasets. The 3D-CAM-S also strongly predicts clinical outcomes. CONCLUSION: A newly developed method for scoring delirium severity using the 3D-CAM (the 3D-CAM-S) has excellent agreement with the CAM-S SF. This new methodology enables clinicians and researchers using the 3D-CAM for surveillance to measure delirium severity and monitor its course simultaneously by tracking changes over time. The 3D-CAM-S expands the utility of the 3D-CAM as an important tool for delirium recognition and management.

Patient-Physician Discordance in Global Assessment in Rheumatoid Arthritis: A Systematic Literature Review With Meta-Analysis.

OBJECTIVE: The integration of the patient in therapeutic decision-making is important in the management of rheumatoid arthritis (RA), but the patient opinion regarding disease status may differ from the physician's opinion. The aim of this study was to assess in the published literature the frequency and drivers of patient-physician discordance in global assessment in RA. METHODS: A systematic literature review of all articles published up to January 2015 in Medline or Embase, reporting discordance in RA, was conducted by 2 investigators. Discordance was defined based on the absolute difference of patient global (PGA) and physician global assessments (PhGA) on 0-10-cm scales. The frequency of discordance and its predictors were collected in each study. Frequencies of discordance were pooled by meta-analysis using random effect. RESULTS: In all, 12 studies were selected (i.e., 11,879 patients): weighted mean ± SD age was 55.1 ± 13.9 years, weighted mean ± SD disease duration was 10.4 ± 9.3 years, and 80.7% were women. The value of the difference |PGA - PhGA| defining discordance varied between ≥0.5 cm (n = 2 studies) to ≥3 cm (n = 5 studies); the weighted mean value was 2.7 cm. The pooled percentage of patients with discordance was 43% (95% confidence interval 36%-51%; range 25%-76%). PGA was usually higher than PhGA. The drivers of PGA were pain and functional incapacity, whereas drivers of PhGA were joint counts and acute-phase reactants. CONCLUSION: Discordance in global assessment was most frequently defined as a difference of 3 points or more; even with such a stringent definition, up to half the patients were found to be discordant. The long-term consequences of this discordance remain to be determined.

What prompts help-seeking for cancer 'alarm' symptoms? A primary care based survey.

BACKGROUND: Encouraging prompt help-seeking for cancer symptoms can help shorten the patient interval and improve timely diagnosis. We explored factors associated with help-seeking in a primary care sample reporting 'alarm' symptoms. METHODS: A questionnaire was mailed to 9771 adults (⩾ 50 years of age and no cancer diagnosis) and 3766 (39%) returned it. Our sample included 1732 adults reporting at least one cancer 'alarm' symptom; with a total of 2726 symptoms. Respondents completed questions relating to help-seeking, demographic and symptom characteristics (e.g., type, knowledge, concern, interference and attribution). RESULTS: Over a third of people who reported a cancer 'alarm' symptom in the past 3 months had not sought help from a doctor. An unexplained lump (odds ratio (OR) 2.46, 1.42-4.26) and persistent unexplained pain (OR 1.79, 1.19-2.69) were associated with increased likelihood of help-seeking. Symptom concern (OR 3.10, 2.19-4.39) and interference (OR 3.06, 2.15-4.36) were associated with an increased likelihood of seeking help independently of symptom type. People who were not working (OR 1.41, 1.09-1.83), were married/cohabiting rather than single (OR 1.38, 1.10-1.74) and were older (60-69 years) rather than younger (50-59 years; OR 1.33, 1.02-1.75) were more likely to have sought help. CONCLUSIONS: Our findings highlighted symptom type and symptom characteristics as key drivers of help-seeking. We also found that there may be specific demographic groups where encouraging help-seeking might be warranted.

Cancer Care Professionals' Attitudes Toward Systematic Standardized Symptom Assessment and the Edmonton Symptom Assessment System After Large-Scale Population-Based Implementation in Ontario, Canada.

CONTEXT: Cancer patients experience a high symptom burden throughout their illness. Despite this, patients' symptoms and needs are often not adequately screened for, assessed, and managed. OBJECTIVES: This study investigated the attitudes of cancer care professionals toward standardized systematic symptom assessment and the Edmonton Symptom Assessment System (ESAS) and their self-reported use of the instrument in daily practice in a large healthcare jurisdiction where this is routine. METHODS: A 21-item electronic survey, eliciting both closed and open-ended anonymous responses, was distributed to all 2806 cancer care professionals from four major provider groups: physicians, nurses, radiotherapists, and psychosocial oncology (PSO) staff at the 14 Regional Cancer Centres across Ontario, Canada. RESULTS: A total of 1065 questionnaires were returned (response rate: 38%); 960 were eligible for analysis. Most respondents (88%) considered symptom management to be within their scope of practice. Sixty-six percent of physicians considered the use of standardized tools to screen for symptoms as "best practice," compared to 81% and 93% of nurses and PSO staff, respectively. Sixty-seven percent of physicians and 85% of nurses found the ESAS to be a useful starting point to assess patients' symptoms. Seventy-nine percent of physicians looked at their patient's ESAS scores at visits either "always" or "often," compared to 29%, 66%, and 89% of radiotherapists, PSO staff, and nurses, respectively. Several areas for improvement of ESAS use and symptom screening were identified. CONCLUSION: Findings show significant albeit variable uptake across disciplines in the use of the ESAS since program initiation. Several barriers to using the ESAS in daily practice were identified. These need to be addressed.

Attitudes of oncologists towards palliative care and the Edmonton Symptom Assessment System (ESAS) at an Ontario cancer center in Canada.

BACKGROUND: Cancer Care Ontario promotes the Edmonton Symptom Assessment System (ESAS) for standardized systematic screening and assessment of symptoms across cancer centers in Ontario, Canada. Attitudes of medical oncologists (MOs), radiation oncologists (ROs), and general practitioners in oncology (GPOs) toward palliative care, and the ESAS were surveyed in Ottawa. METHODS: A four-part questionnaire was developed, drawing on items from similar studies. RESULTS: Forty respondents (17 MOs, 16 ROs, and 7 GPOs) were interviewed. Attitudes to palliative care: regarding coordination of care across the illness trajectory including end of life by MOs, all ROs disagreed while 71.4 % of GPOs and 41.2 % of MOs agreed that this was the MO's role. Most respondents supported palliative care alongside concurrent anti-tumor therapies (82.4 % MOs, 62.5 % ROs, and 100 % GPOs). Attitudes to ESAS: respondents agreed that the ESAS enhances care and assessment of symptom severity. ROs felt that reviewing the ESAS histogram was less useful than did MOs (42.9 versus 76.5 %, respectively); 56.3 % of ROs and 88.2 % of MOs agreed that the ESAS is useful for follow-up (p < 0.08); 64.7 % of MOs, 88.3 % of GPOs, and 6.3 % of ROs agreed with ESAS completion at every visit (p < 0.00). Frequency of use of the ESAS: 62.5 % of respondents reported inspecting the ESAS "most of the time or always," while 17.5 % reported "never" or "rarely." CONCLUSIONS: MOs and GPOs appear more positive than ROs toward regular use of ESAS. There is discordance between what is perceived to be a useful beneficial instrument versus actual use of the instrument in daily practice. The reasons for this gap need to be better understood in future studies.

Menopausal symptoms in an intercultural context: a comparison between German women, Chinese women and migrant Chinese women using the Menopause Rating Scale (MRS II).

OBJECTIVE: What are the differences between the occurrence of menopausal symptoms in German women, migrant Chinese women in Germany and Chinese women in their native country? Can these potential discrepancies be explained by sociocultural differences? What are the differences in menopausal symptoms in connection with the consumption of soya? PATIENT STUDY GROUP AND METHODS: Cross-sectional study 2005-2008. Survey of three groups of women aged between 45 and 60 years (native German women in Berlin, migrant Chinese women in several German cities, Chinese women in Beijing) with an evaluated set of questionnaires surveying socio-demographic data, use of hormone therapy, migration/acculturation, MRS II and other areas. RESULTS: A total of 2,109 questionnaires were sent out and a 41 % response rate was achieved, although this varied greatly across the three individual study groups. The results of the MRS II factor analysis were almost identical for German women and migrant Chinese women, but there were some differences in content compared to the Chinese study group. Chinese women surveyed in Beijing reported severe symptoms significantly less frequently in all three symptom groups (factors) of MRS II than the German women and the migrant Chinese women, but the values from the German women and migrant Chinese women surveyed are relatively similar. In all three study groups there are no significant differences in the stated severity of the symptoms, regardless of whether soya is consumed frequently or less frequently. CONCLUSION: The question whether the differences found are solely cultural or migration-related must be examined in further studies. The special experiences and situation in life of migrant women should be taken into particular account by attending physicians during the care and treatment of women in this phase of life.

Avaliação de depressão, ansiedade, qualidade de vida e bem-estar psicológico em pacientes com diagnóstico de neoplasia endócrina múltipla tipo 2 / Depression assessment, anxiety, quality of life and well-being psychological in patients diagnosed with cancer multiple endocrine type 2

Introdução: A neoplasia endócrina múltipla tipo 2 (MEN2) é uma doença hereditária autossômica dominante causada por mutação germinativa RET, que cursa com carcinoma medular de tireóide (CMT), feocromocitoma (Feo) e hiperparatireoidismo. O CMT é uma neoplasia maligna, que se desenvolve já na 1ª década de vida, pouco responsiva a quimioterapia/radioterapia. Assim, tireoidectomia profilática é indicada antes dos 5 ou dos 10 anos, dependendo do códon mutado, para assegurar a cura. O CMT é um tumor de crescimento lento e os pacientes convivem com o diagnóstico de câncer por décadas. Além disto, podem desenvolver Feo, predispondo os ao risco de óbito por infarto agudo do miocárdio ou acidente vascular em idade jovem. Somam-se situações de stress como risco de transmissão aos descendentes, expectativa de resultados de exames periódicos e risco de múltiplas cirurgias. Há poucos trabalhos enfocando os aspectos psíquicos em MEN2. O doente oncológico pode desenvolver sintomas psicológicos de: ansiedade, depressão, angústia, medo de recorrência da doença, perturbações psicossomáticas, stress decorrente das cirurgias e auto-conceito negativo. Objetivos: avaliar a sintomatologia ansiosa e depressiva, a qualidade de vida, o ajustamento psicológico, a presença de culpa auto-referida pela transmissão da doença aos filhos, o conhecimento da doença e a adesão ao tratamento. Casuística: Avaliação de 43 pacientes pertencentes a 12 famílias com diagnóstico clínico e gênico de MEN2. Metodologia: Avaliação psicológica por Entrevista semidirigida, Escala Hospitalar de Ansiedade e Depressão (HAD), European Organization for Research and Treatment of Cancer Quality of Life, Escala de Ajustamento Mental para Câncer e Estrutura Fatorial. A análise dos dados foi realizada de modo quantitativo e qualitativo. Resultados: Todos os 43 pacientes com MEN2 apresentavam CMT (100%) e 19 deles tinham diagnóstico prévio ou atual de Feo (44%; 19/43). Dos 43 pacientes, 16 (37%) tratados por CMT...

Introduction: Multiple endocrine neoplasia type 2 (MEN2) is autosomal-dominant hereditary cancer syndrome caused by germline RET mutation with high susceptibility to develop tumors as medullary thyroid carcinoma (MTC), pheochromocytoma (Pheo), and hyperparathyroidism. The CMT is a malignancy that develops already in the 1st decade of life, poorly responsive to chemotherapy / radiotherapy. Thus, prophylactic thyroidectomy is indicated before 5 or 10 years, depending on the mutated codon to ensure healing. The CMT is a slow-growing tumor and the patients live with the diagnosis of cancer for decades. In addition, they can develop Pheo, predisposing them to risk of death from myocardial infarction or stroke at a young age. Add to stress conditions such as risk of transmission to offspring, expectative for results of periodic examinations and risk of multiple surgeries. It is known that cancer patients can develop psychological symptoms of anxiety, depression, distress, fear of recurrence, stress for surgery and negative self-concept. However, studies focusing on the psychological aspects in MEN2 are strict and mainly related with the time of RET genetic testing and genetic counselling. Objectives: To assess anxious and depressive symptoms, quality of life, psychological adjustment, presence of guilt by self-reported disease transmission to children, knowledge of disease and treatment adherence. Methods: Evaluation of 43 patients from 12 families with clinical and genetic diagnosis of MEN2. Methodology: Psychological assessment by semi-directed interview, Scale Hospital Anxiety and Depression (HAD), European Organization for Research and Treatment of Cancer Quality of Life Scale, Mental Adjustment to Cancer and Factor Structure. Data analysis was performed quantitatively and qualitatively. Results: All 43 patients had CMT MEN2 (100%) and 19 had previous or current diagnosis of pheochromocytoma (44%, 19/43). Of the 43 patients, 16 (37%) treated by...