Impacts of X-linked Retinitis Pigmentosa and Patient Pathways in European Countries: Results from the Cross-sectional EXPLORE XLRP-1 Physician Survey.

INTRODUCTION: X-linked retinitis pigmentosa (XLRP) is a rare, incurable, vision-threatening, genetic disease. In this study, we aimed to reveal the real-world burden of this disease from the viewpoint of retina specialists and geneticists involved directly in XLRP care and to identify unique insights that may not otherwise be available through typical clinical studies or health economic research. METHODS: In this exploratory, cross-sectional study (EXPLORE XLRP-1), retina specialists (n = 20) and geneticists (n = 5) in France, Germany, Italy, Spain, and the UK provided anonymized insights on their experiences managing patients with XLRP (n = 80) via an online survey and 60-min telephone interview. RESULTS: Survey respondents reported that patient independence decreased over time, where 37% of patients were considered "completely autonomous" at diagnosis versus 23% at the last consultation. At their last visit, 45% of patients were active in the workforce; 67% (12/18) of "completely autonomous" patients had active working status compared with 13% (1/8) of "completely dependent" patients. The average time from onset of symptoms to diagnosis was 4 years and varied among countries. In 78% of patients, XLRP was confirmed by genetic testing, the rate of which varied among countries (range, 50-94%), taking up to 6 months to receive results. Specialists identified unmet needs in XLRP management including more standardized assessments of quality of life (QoL) as well as easier and earlier access to specialists, genetic testing, patient support programs, and effective treatment options. CONCLUSIONS: The diagnosis, genetic testing, and management pathways among patients with XLRP can vary considerably. There is a need for more standardized diagnosis and management pathways, and QoL assessments, due to the major impact that XLRP has on patients' lives.

A secondary analysis of three types of social support in relation to self-efficacy, disease impact, and depression in fibromyalgia.

OBJECTIVE: Fibromyalgia (FM) is a chronic pain condition associated with depression. However, self-efficacy (belief in own ability to manage symptoms) and social support may be protective. This study tested three types of social support (emotional, tangible, and instrumental) for moderation of the mediating effect of self-efficacy on the relationship between FM impact and depression over time. METHODS: Six hundred participants with FM were randomly assigned to no intervention, social support group, or combined self-management and social support. The Fibromyalgia Impact Questionnaire, Norbeck Social Support Questionnaire, FM-modified Arthritis Self-Efficacy Scale, and Center for Epidemiological Studies-Depression surveys were administered at baseline, 6, 12, and 18 months. There were no significant intervention effects on the variables of interest, however, participants' scores were used to assess four longitudinal models. RESULTS: Self-efficacy showed mediation both between (b = 0.104, p < .001, 95% CI = [0.071, 0.137]) and within (b = 0.89, p < .001, 95% CI = [0.073, 0.106]) individuals. Only tangible support demonstrated moderation of the relationship between FM impact and self-efficacy, and only between individuals (b = 0.154, p = .022, 95% CI = [0.022, 0.287]). CONCLUSION: The results indicated that self-efficacy attenuated a portion of the effect of FM impact on depression over time. Additionally, higher levels of tangible support (the belief that your social network can provide you with assistance) were related to weaker influence of FM impact on self-efficacy over time. These factors may be important targets for the prevention of depression in people with FM.

Scale Validation and Attributional Analysis of Public Stigma in Early-Pandemic COVID-19.

PURPOSE: To test the validity of a COVID-19 public stigma scale and an attributional model of stigma during the early stages of the pandemic. DESIGN: We administered a cross-sectional survey that included scales related to COVID-19 stigma to U.S. adults. SETTING: We used Amazon MTurk online survey panel to recruit participants in June 2020. SUBJECTS: U.S. adults (N = 170) participated in the study. Participants were average age of 37 and majority were men (61.2%) and White (77.6%). MEASURES: The Stigma Towards Disease Scale (SDS) was adapted to measure public stigma directed towards COVID-19 (SDS-C19). Additional stigma-related measures were adapted for this study. ANALYSIS: Factorial structure of SDS-C19 was assessed using confirmatory factor analysis (CFA). Validity of SDS was examined using Pearson correlations with other stigma measures. We evaluated the attributional model of stigma using structural equation modeling. RESULTS: Internal consistency of SDS-C19 was high and a three-factor model reflecting cognitive, affective, and behavioral factors was supported (χ2 [71, N = 170] =140.954, P = .00, CFI= .946, TLI = .931, RMSEA = .076, SRMR = .087). The SDS-C19 had strong correlations with other stigma-related measures. A blame-mediated attribution model was supported (χ2 [8, N = 170] = 21.793, P = .00, CFI = .976, TLI =.956, RMSEA = .101, SRMR = .058). CONCLUSION: The SDS-C19 is a valid tool for assessing COVID-19 stigma. SDS-C19 and the attribution model can guide public health communication.

A scoping review on associations between paratuberculosis and productivity in cattle.

Paratuberculosis (PTB), or Johne's disease, is a disease with worldwide distribution caused by Mycobacterium avium subsp. paratuberculosis (MAP) that leads to chronic enteritis, primarily in ruminants. Even subclinical infection significantly reduces the animals' performance, and consequences of the disease lead to high economic losses for the cattle industry. To estimate the economic burden of bovine PTB and to evaluate the benefits of a potential control program, accurate estimates of the production effects associated with the disease are required. Therefore, the aim of this scoping review was to provide a comprehensive overview of associations between MAP infection and production parameters in cattle. The studies were collected from three electronic databases. Of the total 1,605 identified studies, 1,432 did not meet the set criteria in the title and abstract screening and a further 106 were excluded during full-text review. Finally, data on 34 different production parameters were extracted from 67 publications. Results show that the magnitude of reported performance losses varies depending on several factors, such as the type of diagnostic test applied, disease status or number of lactations. Studies reported a reduction in milk yield, changes in milk quality (e.g., higher somatic cell count, lower amount of produced milk fat and protein), reduced fertility (e.g., prolonged calving interval and service period, higher abortion rate and calving difficulties), reduced weaning weight, slaughter weight and slaughter value, or a higher risk for mastitis. Results from the studies included in our review show a median decrease of milk yield per infected cow of -452 kg/lactation for raw and -405 kg/lactation for modeled data. Similarly, the amount of produced milk protein fell by a median of -14.41 kg/lactation for modeled data and the amount of produced milk fat by a median of -13.13 kg/lactation. The reviewed studies revealed a prolonged calving interval by around 30 days and a 1.5 to 3 times higher likeliness of culling per lactation in PTB positive animals. Results from this scoping review provide evidence-based inputs for the development of economic models aiming at the estimation of the costs and benefits associated with different disease control scenarios for PTB.

Effect of Myxoma Virus Species Jump on Iberian Hare Populations.

The myxoma virus species jump from European rabbits (Oryctolagus cuniculus) to Iberian hares (Lepus granatensis) has raised concerns. We assess the decline suffered by Iberian hare populations on the Iberian Peninsula and discuss the association between the effect of myxomatosis and the average abundance index, which we estimated by using hunting bags.

The oral health impact profile and well-being on mothers and preschool children.

OBJECTIVES: to verify the contribution of mothers' oral health impact profile to their children's oral health profile and the contribution of mothers' well-being and the caries index (dmft) to children's well-being. METHODS: This is a cross-sectional observational study. Mothers and pre-school children enrolled in public schools in the municipality of Araraquara-SP took part. The Oral Health Impact Profile Questionnaire (OHIP-14), Satisfaction with Life Scale (SWLS), Early Childhood Oral Health Impact Scale (ECOHIS) and the Autoquestionnaire Qualité de Vie Enfant Imagé (AUQEI) were used. To diagnose caries, a clinical examination was carried out to calculate the dmft index. Path analysis was carried out and the path coefficients were estimated (ß) and evaluated using the z-test (α = 5%). RESULTS: 443 children took part (5.19 ± 0.64 years; 52.4% boys) with an mean dmft of 1.31 ± 2.19. The mean age of the mothers was 33.4 ± 7.01 years. There was a significant impact of dmft and maternal well-being on the child's subjective well-being (s2explained = 43%). The mothers' oral health impact profile and the child's caries experience had a significant influence on both the child (OHIP: ß = 0.22; p < 0.001; dmft: ß = 0.48; p < 0.001) and the family (OHIP: ß = 0.29; p < 0.001; dmft: ß = 0.32; p < 0.001). The child's dmft (ß=-0.10; p = 0.005) and the mothers' subjective well-being (ß=-0.61; p < 0.001) had a significant impact on the child's subjective well-being. CONCLUSION: The mothers' oral health impact profile and the child's caries experience had an impact on both the child and the family. Mothers' subjective well-being and caries experience should be considered when assessing the subjective well-being of Brazilian preschool children.

Patient-Reported Outcomes Measures, Polycystic Kidney Disease Burden, and Outcomes in Autosomal Dominant Polycystic Kidney Disease.

Rationale & Objective: Using OVERTURE (NCT01430494) study data on patient-perceived health, health care utilization, and productivity in autosomal dominant polycystic kidney disease (ADPKD), this research was conducted to characterize the burden of illness in patients with ADPKD and assess whether patient-reported outcome (PRO) assessment scores predict clinical and health-economic outcomes. Study Design: Data were analyzed from a prospective, observational study. Setting & Participants: The study cohort comprised 3,409 individuals with ADPKD in 20 countries who were aged 12-78 years and were in chronic kidney disease (CKD) stages G1-G5 and Mayo risk subclasses 1A-1E. Predictors: Scores on PRO instruments, including disease-specific assessments [ADPKD-Impact Scale (ADPKD-IS), and ADPKD-Urinary Impact Scale (ADPKD-UIS)] and generic measures were assessed. Outcomes: Clinical variables [eg, height-adjusted total kidney volume (htTKV), estimated glomerular filtration rate (eGFR), and abdominal girth] and health-economic outcomes were assessed. Analytical Approach: Associations among variables were evaluated using Spearman correlations, logistic regression, and generalized linear mixed effects repeated measures models. Results: Baseline CKD stage and Mayo risk classification showed little correlation with baseline PRO scores; however, scores on disease-specific instruments and measures of physical functioning were worse at more severe CKD stages. PRO scores predicted hospitalizations and sick days at 6-18 months, with strongest associations noted for the ADPKD-IS. PRO scores were not associated with htTKV and eGFR, but worse PRO scores were associated with greater abdominal girth. Poor baseline ADPKD-IS scores were positively associated with occurrence of ADPKD-related symptoms up to 18 months, including kidney pain (OR, 5.30; 95% CI, 2.75-10.24), hematuria (OR, 4.58; 95% CI, 1.99-10.53), and urinary tract infection (OR, 4.41; 95% CI, 1.93-10.11; P < 0.001 for all). Limitations: A limitation of the study was the maximum 18 months of follow-up available to assess outcomes. Conclusions: PRO scores predicted clinical and health-economic outcomes, such as hospitalization and absence from work, underscoring the importance of quality of life assessment of individuals with ADPKD. Plain-Language Summary: Patient-reported outcomes (PROs) are increasingly recognized as important parameters for assessing the clinical and humanistic burden of autosomal dominant polycystic kidney disease (ADPKD). We analyzed data from the observational OVERTURE study to better characterize disease impact on quality of life and determine whether patient-perceived burden might predict outcomes. Scores on PRO assessment instruments predicted hospitalizations and sick days at 6-18 months, with associations strongest for the disease-specific ADPKD-Impact Scale. Compared to patients who rated their health-related quality of life as good, those with poor baseline scores were significantly more likely to report ADPKD-related signs and symptoms up to 18 months of follow-up. These findings support using disease-specific PRO assessment instruments to assess and predict the impact of ADPKD.

Psychological Impact of a Prenatal Diagnosis of Congenital Heart Disease on Parents: Is It Time for Tailored Psychological Support?

The prenatal diagnosis of congenital heart disease (CHD) represents, for both parents, a particularly stressful and traumatic life event from a psychological point of view. The present review sought to summarize the findings of the most relevant literature on the psychological impact of prenatal diagnosis of CHD on parents, describing the most common mechanisms employed in order to face this unexpected finding. We also highlight the importance of counseling and the current gaps in the effects of psychological support on this population.

Perceived Stigma in Patients with Autoimmune Hepatitis.

Perceived stigma (PS) adversely impacts psychosocial and disease outcomes in patients with chronic liver diseases (CLD), and those with autoimmune hepatitis (AIH) may be at risk for PS given inaccurate assumptions about the origin of their diagnosis. The aims of the current study are to describe the frequency of PS in patients with AIH, compare rates of PS in AIH to rates of PS in primary biliary cholangitis (PBC) and CLD, and examine demographic correlates of PS. 262 adults with AIH (95% female, Mage = 51.53 years) completed online questionnaires on demographics, disease information, and PS. 54-68% reported PS with themes of selective disclosure, non-disclosure, or hiding diagnosis. PS was higher in those with AIH compared to those with PBC, but lower than those with various CLD. Age was inversely related to PS. Given the results, provider screening of PS and integration of clinical health psychologists may be helpful for identifying PS in patients with AIH.

Patient-reported experiences during and following treatment with belantamab mafodotin for relapsed/refractory multiple myeloma in the DREAMM-2 study.

Introduction: Patients with relapsed or refractory multiple myeloma (RRMM) are likely to be living with persistent symptoms, especially bone pain and fatigue, and experiencing restrictions in their physical and social functioning, which reduce health-related quality of life. Methods: This qualitative interview study evaluated patients' perspectives about living with RRMM and their treatment with belantamab mafodotin, using interviews embedded in the Phase II DREAMM-2 trial (NCT03525678) with belantamab mafodotin. Patients consented to participate in up to 2 recorded telephone interviews (at treatment cycle 4 [C4] and at end of treatment [EOT]) comprising open-ended questions. Results: A total of 142 interviews were conducted with 111 unique patients. At C4, common symptoms included neuropathy, fatigue, and bone or joint pain. Improvements in symptom severity were reported by patients who responded to belantamab mafodotin. Symptoms associated with visual impairment, eye irritation, and eye pain reported during the trial were reported to be at- or near-resolution by the EOT interview. Regarding impacts of underlying MM, patients most commonly expressed concerns about changes in daily performance and lifestyle for both responders (67.5% of all impact expressions) and non-responders (63.2%). Overall, interview participants reported being satisfied with belantamab mafodotin treatment. Discussion: This qualitative patient interview study provides valuable insight into patients' symptomatic experience with belantamab mafodotin for their RRMM treatment and may help healthcare providers better anticipate their patients' real-world experience and needs when prescribing this novel agent in the clinic.

COVID-19 epidemiology and rural healthcare: a survey in a Spanish village.

We used primary care data to retrospectively describe the entry, spread, and impact of COVID-19 in a remote rural community and the associated risk factors and challenges faced by the healthcare team. Generalized linear models were fitted to assess the relationship between age, sex, period, risk group status, symptom duration, post-COVID illness, and disease severity. Social network and cluster analyses were also used. The first six cases, including travel events and a social event in town, contributed to early infection spread. About 351 positive cases were recorded and 6% of patients experienced two COVID-19 episodes in the 2.5-year study period. Five space-time case clusters were identified. One case, linked with the social event, was particularly central in its contact network. The duration of disease symptoms was driven by gender, age, and risk factors. The probability of suffering severe disease increased with symptom duration and decreased over time. About 27% and 23% of individuals presented with residual symptoms and post-COVID illness, respectively. The probability of developing a post-COVID illness increased with age and the duration of COVID-associated symptoms. Carefully registered primary care data may help optimize infection prevention and control efforts and upscale local healthcare capacities in vulnerable rural communities.

The Mediterranean diet, and not dietary inflammatory index, is associated with rheumatoid arthritis disease activity, the impact of disease and functional disability.

PURPOSE: To assess the relationship between adherence to the Mediterranean Diet (MD) /individual Dietary Inflammatory Index (DII) and disease activity, disease impact, and functional status in Rheumatoid Arthritis (RA) patients. METHODS: RA patients followed at a hospital in Lisbon, Portugal, were recruited. DII was calculated using dietary intake data collected with a food frequency questionnaire (FFQ). Adherence to the MD was obtained using the 14-item Mediterranean Diet assessment tool. Disease Activity Score of 28 Joints (DAS28) and the DAS28 calculated with C-Reactive Protein (DAS28-CRP) were used to assess disease activity. Impact of disease and functional status were evaluated using the Rheumatoid Arthritis Impact of Disease (RAID) questionnaire and the Health Assessment Questionnaire (HAQ), respectively. RESULTS: 120 patients (73.3% female, 61.8 ± 10.1 years of age) were included. Patients with higher adherence to the MD had significantly lower DAS28-CRP (median 3.27(2.37) vs 2.77(1.49), p = 0.030), RAID (median 5.65(2.38) vs 3.51(4.51), p = 0.032) and HAQ (median 1.00(0.56) vs 0.56(1.03), p = 0.013) scores. Higher adherence to the MD reduced the odds of having a higher DAS28 by 70% (OR = 0.303, 95%CI = (0.261, 0.347), p = 0.003). Lower adherence to MD was associated with higher DAS28-CRP (ß = - 0.164, p = 0.001), higher RAID (ß = - 0.311, p < 0.0001), and higher HAQ scores (ß = - 0.089, p = 0.001), irrespective of age, gender, BMI and pharmacological therapy. Mean DII of our cohort was not significantly different from the Portuguese population (0.00 ± 0.17 vs - 0.10 ± 1.46, p = 0.578). No associations between macronutrient intake or DII and RA outcomes were found. CONCLUSIONS: Higher adherence to the MD was associated with lower disease activity, lower impact of disease, and lower functional disability in RA patients.

Translation and validation of the Pancreatic Cancer Disease Impact score for Chinese patients with pancreatic cancer: A methodological and cross-sectional study.

Objective: We aimed to establish and validate the Chinese version of the Pancreatic Cancer Disease Impact (C-PACADI) score for Chinese patients with pancreatic cancer (PC). Methods: This was a methodological and cross-sectional study. We established the C-PACADI score following Beaton's translation guidelines and then included 209 patients with PC to evaluate C-PACADI's reliability and validity. Results: The Cronbach's alpha coefficient of the C-PACADI score was 0.822. The correlation coefficient between "skin itchiness" score and the total score was 0.224, while the correlation coefficients ranged from 0.515 to 0.688 (P â€‹< â€‹0.001) for all the other items. The item content validity index and the scale content validity index, evaluated by eight experts were 0.875 and 0.98, respectively. Regarding concurrent validity, the total score of the C-PACADI score was moderately correlated with the EuroQol-5D (EQ-5D) index and the EQ-5D VAS score (r â€‹= â€‹-0.738, P â€‹< â€‹0.01; r â€‹= â€‹-0.667, P â€‹< â€‹0.01, respectively); the individual-item scores of C-PACADI on pain/discomfort, anxiety, loss of appetite, fatigue, and nausea were strongly associated with the corresponding symptoms of the Edmonton Symptom Assessment System scale (r ranged from 0.879 to 0.916, P â€‹< â€‹0.01). The known-group validity was demonstrated by C-PACADI's ability to detect significant symptom differences between groups stratified by treatment modalities (P â€‹< â€‹0.05) and health status (P â€‹< â€‹0.001). Conclusions: The C-PACADI score is a suitable disease-specific tool for measuring the prevalence and severity of multiple symptoms in the Chinese population with PC.

Perceptions of Knowledge, Disease Impact and Predictive Genetic Testing in Family Members at Risk to Develop Early-Onset Alzheimer's Disease (EOAD) and Their Levels of Suicidal Ideation: A Mixed Study.

Early-onset Alzheimer's disease (EOAD) is an autosomal dominantly inherited disease, in which a founder effect has been described for A431E mutation in the PSEN1 gene, with most of the affected patients being residents of a small town in the state of Jalisco in Mexico. To date, no studies have been performed in order to know the impact of the disease on this population. Therefore, the objective of this study was to investigate the perceptions in the knowledge, the impact of the disease and the intention to take the predictive genetic testing in the population at genetic risk of Jalisco. For this objective, we performed a mixed study that included a qualitative methodology (semi-structured interviews), and, in addition, we measured suicidal ideation, stress and depression with quantitative instruments in order to compare them with a control group. Of the 28 invited individuals, 9 accepted to participate, from which, 5 (55.56%) participants did not know their genetic risk to develop the disease and 5 (55.56%) would want to take the predictive genetic testing in order to be prepared to face the disease; however, among those who did not want to know, 2 individuals (22.22%) mentioned that they would consider suicide if they were positive for the pathogenic variant. On the impact of the disease, we detected that the adaptation to the familiar's needs was the most frequent answer, including changes in their lifestyle (being responsible since very young, changes in social life and familiar dynamic), this being their main stressor, followed by changes in plans for the future and contemplating the possibility of being affected. Although no differences in stress and depression between groups were observed, we detected that suicidal ideation was significantly higher in the group of cases. These results highlight the importance to involve all the family in genetic counseling in order to clarify any doubts and also to attend to them psychologically to prevent suicidal ideation and attempts.

Gender-specific differences in patients with psoriatic arthritis receiving ustekinumab or tumour necrosis factor inhibitor: real-world data.

OBJECTIVE: Investigate effects of gender on disease characteristics and treatment impact in patients with PsA. METHODS: PsABio is a non-interventional European study in patients with PsA starting a biological DMARD [bDMARD; ustekinumab or TNF inhibitor (TNFi)]. This post-hoc analysis compared persistence, disease activity, patient-reported outcomes and safety between male and female patients at baseline and 6 and 12 months of treatment. RESULTS: At baseline, disease duration was 6.7 and 6.9 years for 512 females and 417 males respectively. Mean (95% CI) scores for females vs males were: clinical Disease Activity Index for Psoriatic Arthritis (cDAPSA), 32.3 (30.3, 34.2) vs 26.8 (24.8, 28.9); HAQ-Disability Index (HAQ-DI), 1.3 (1.2, 1.4) vs 0.93 (0.86, 0.99); total PsA Impact of Disease-12 (PsAID-12) score, 6.0 (5.8, 6.2) vs 5.1 (4.9, 5.3), respectively. Improvements in scores were smaller in female than male patients. At 12 months, 175/303 (57.8%) female and 212/264 (80.3%) male patients achieved cDAPSA low disease activity, 96/285 (33.7%) and 137/247 (55.5%), achieved minimal disease activity (MDA), respectively. HAQ-DI scores were 0.85 (0.77, 0.92) vs 0.50 (0.43, 0.56), PsAID-12 scores 3.5 (3.3, 3.8) vs 2.4 (2.2, 2.6), respectively. Treatment persistence was lower in females than males (P ≤ 0.001). Lack of effectiveness was the predominant reason to stop, irrespective of gender and bDMARD. CONCLUSIONS: Before starting bDMARDs, females had more severe disease than males and a lower percentage reached favourable disease states, with lower persistence of treatment after 12 months. A better understanding of the mechanisms underlying these differences may improve therapeutic management in females with PsA. TRIAL REGISTRATION: ClinicalTrials.gov, https://clinicaltrials.gov, NCT02627768.

Clusters of individuals recovering from an exacerbation of chronic obstructive pulmonary disease and response to in-hospital pulmonary rehabilitation.

INTRODUCTION AND OBJECTIVES: Due to the present low availability of pulmonary rehabilitation (PR) for individuals recovering from a COPD exacerbation (ECOPD), we need admission priority criteria. We tested the hypothesis that these individuals might be clustered according to baseline characteristics to identify subpopulations with different responses to PR. METHODS: Multicentric retrospective analysis of individuals undergone in-hospital PR. Baseline characteristics and outcome measures (six-minute walking test - 6MWT, Medical Research Council scale for dyspnoea -MRC, COPD assessment test -CAT) were used for clustering analysis. RESULTS: Data analysis of 1159 individuals showed that after program, the proportion of individuals reaching the minimal clinically important difference (MCID) was 85.0%, 86.3%, and 65.6% for CAT, MRC, and 6MWT respectively. Three clusters were found (C1-severe: 10.9%; C2-intermediate: 74.4%; C3-mild: 14.7% of cases respectively). Cluster C1-severe showed the worst conditions with the largest post PR improvements in outcome measures; C3-mild showed the least severe baseline conditions, but the smallest improvements. The proportion of participants reaching the MCID in ALL three outcome measures was significantly different among clusters, with C1-severe having the highest proportion of full success (69.0%) as compared to C2-intermediate (48.3%) and C3-mild (37.4%). Participants in C2-intermediate and C1-severe had 1.7- and 4.6-fold increases in the probability to reach the MCID in all three outcomes as compared to those in C3-mild (OR = 1.72, 95% confidence interval [95% CI] = 1.2 - 2.49, p = 0.0035 and OR = 4.57, 95% CI = 2.68 - 7.91, p < 0.0001 respectively). CONCLUSIONS: Clustering analysis can identify subpopulations of individuals recovering from ECOPD associated with different responses to PR. Our results may help in defining priority criteria based on the probability of success of PR.

Airflow grades, outcome measures and response to pulmonary rehabilitation in individuals after an exacerbation of severe chronic obstructive pulmonary disease.

BACKGROUND: Individuals with COPD may be staged according to symptoms and exacerbation history (GOLD groups: A-D) and on airflow obstruction (GOLD grades: 1-4). Guidelines recommend pulmonary rehabilitation (PR) for these individuals, including those recovering from an exacerbation (ECOPD) OBJECTIVE: To evaluate whether in individuals with clinically severe COPD, recovering from an ECOPD, the effect size of an in-hospital PR program would be affected by airflow severity grades and assessed outcome measures. METHODS: Retrospective, multicentre study. Participants were compared according to different GOLD airflow grades. In addition to the MRC dyspnoea scale, six-minute walking distance test and COPD assessment test (CAT), Barthel dyspnoea index (Bid), and Short Physical Performance Battery (SPPB) were assessed, evaluating the proportion of individuals reaching the minimum clinically important difference (MCID) (responders). RESULTS: Data of 479 individuals, completing the program were evaluated. Most of the participants were allocated in GOLD grades 4, (57.6%) and 3 (22.1%). All outcome measures significantly improved after PR (p < 0.05), without any significant difference in the proportion of responders in any measure. CONCLUSIONS: in individuals with severe COPD, recovering from ECOPD the success rate of PR does not depend on airflow severity, or outcome measure assessed. In addition to the most used outcome measures, also Bid and SPPB are sensitive to PR.

Intensidade e desconforto do zumbido pós-covid-19: um estudo comparativo / Intensity and discomfort of post-COVID-19 tinnitus: a comparative study

RESUMO Objetivo caracterizar o grau de intensidade e desconforto do zumbido de indivíduos, pós-COVID-19. Métodos pesquisa observacional, exploratória e de corte transversal com 242 participantes, divididos em dois grupos iguais, pareados de acordo com gênero e faixa etária: grupo-controle (GC), composto por indivíduos com zumbido em período pré-pandêmico, e grupo de estudo (GE), composto por participantes que referiram zumbido pós-COVID-19, de diferentes regiões do país. Foram comparados os escores gerais e de domínios específicos do Tinnitus Handicap Inventory (THI) e da Escala Visual Analógica (EVA), por meio de análise estatística descritiva, testes de normalidade, comparação de grupos e de correlação entre as variáveis. Resultados em cada grupo, 93 participantes eram do gênero feminino e 28, do masculino, sendo a média das idades de 35 anos. Os graus desprezível e leve do THI e leve e moderado da EVA foram maiores para o GE, enquanto o domínio catastrófico do THI e a EVA apontaram piores escores para o GC. Houve diferença significativa entre todos os domínios das escalas inter e intragrupos. Conclusão manifestações mais brandas de incômodo, intensidade e desconforto do zumbido pós-COVID-19 foram encontradas, em comparação ao sintoma decorrente de outras causas. Assim, o impacto do zumbido para a população estudada foi menos autorreferido, apontando para melhores possibilidades terapêuticas e prognósticas.

ABSTRACT Purpose to characterize the degree of intensity and discomfort of tinnitus in post-COVID-19 individuals. Methods observational, exploratory and cross-sectional research with 242 participants, divided into two equal groups matched according to sex and age group. The control group, composed of individuals with tinnitus in the pre-pandemic period, and the study group, composed of participants who reported post-COVID-19 tinnitus in different regions of the country. General and domain-specific scores from the Tinnitus Handicap Inventory (THI) and Visual Analogue Scale (VAS) were compared through descriptive statistical analysis, normality tests, comparison of groups and correlation between variables. Results in each group, 93 participants were female and 28 male, with a mean age of 35 years. The "negligible" and "mild" degrees of the THI and the "mild" and "moderate" of the VAS were higher for the SG, while the catastrophic domain of the THI and the VAS indicate worse scores for the CG. There was a significant difference between all domains of the inter- and intra-group scales. Conclusion milder manifestations of post-COVID-19 tinnitus disturbance, intensity and discomfort were found, compared to symptoms arising from other causes. Thus, the self-reported impact of the studied population was lower, pointing to better therapeutic and prognostic possibilities.

Improving multimorbidity measurement using individualized disease-specific quality of life impact assessments: predictive validity of a new comorbidity index.

BACKGROUND: Interpretation of health-related quality of life (QOL) outcomes requires improved methods to control for the effects of multiple chronic conditions (MCC). This study systematically compared legacy and improved method effects of aggregating MCC on the accuracy of predictions of QOL outcomes. METHODS: Online surveys administered generic physical (PCS) and mental (MCS) QOL outcome measures, the Charlson Comorbidity Index (CCI), an expanded chronic condition checklist (CCC), and individualized QOL Disease-specific Impact Scale (QDIS) ratings in a developmental sample (N = 5490) of US adults. Controlling for sociodemographic variables, regression models compared 12- and 35-condition checklists, mortality vs. population QOL-weighting, and population vs. individualized QOL weighting methods. Analyses were cross-validated in an independent sample (N = 1220) representing the adult general population. Models compared estimates of variance explained (adjusted R2) and model fit (AIC) for generic PCS and MCS across aggregation methods at baseline and nine-month follow-up. RESULTS: In comparison with sociodemographic-only regression models (MCS R2 = 0.08, PCS = 0.09) and Charlson CCI models (MCS R2 = 0.12, PCS = 0.16), increased variance was accounted for using the 35-item CCC (MCS R2 = 0.22, PCS = 0.31), population MCS/PCS QOL weighting (R2 = 0.31-0.38, respectively) and individualized QDIS weighting (R2 = 0.33 & 0.42). Model R2 and fit were replicated upon cross-validation. CONCLUSIONS: Physical and mental outcomes were more accurately predicted using an expanded MCC checklist, population QOL rather than mortality CCI weighting, and individualized rather than population QOL weighting for each reported condition. The 3-min combination of CCC and QDIS ratings (QDIS-MCC) warrant further testing for purposes of predicting and interpreting QOL outcomes affected by MCC.