Dyspnea Index: An upper airway obstruction instrument; translation and validation in Swedish.

OBJECTIVE: Upper airway dyspnoea is a challenging condition in which assessing the discomfort experienced by the patient is essential. There are three patient-reported outcome (PRO) instruments developed particularly for this patient group, none of which is available in Swedish. The aim of this study was to translate the Dyspnea Index (DI) into Swedish and validate the instrument for use in the Swedish-speaking population by investigating its basic psychometric properties. DESIGN: A prospective instrument validation study. SETTING: Tertiary referral centre. PARTICIPANTS: Fifty-three (n = 53) patients with upper airway dyspnoea and 19 healthy controls. MAIN OUTCOME MEASURES: The questionnaire was translated into Swedish (swDI) with a forward-backward method. Reliability, repeatability, responsiveness and construct validity were assessed by asking the subjects to complete the swDI, a visual analog scale (VAS) at exertion and at rest and the Voice Handicap Index (VHI). RESULTS: The swDI showed excellent internal consistency (Cronbach's α: 0.85) and repeatability (interclass correlation coefficient: 0.87 and Pearson's r: .89) in the patient group. No ceiling effect was observed (maximum score achieved was 39; 85% of the patients scored ≤ 36). SwDI scores moderately correlated with VAS at exertion (r: .59) and at rest (r: .42), yet poorly with the VHI (r: .36). The effect size (ES) was 3.8. CONCLUSIONS: The swDI is a valid, robust and reliable questionnaire for self-assessment in Swedish-speaking patients with upper airway obstruction. A future anchor-based longitudinal study is needed to assess the smallest detectable change (SDC) and minimal important change (MIC) that were not estimated in our study.

Validation and clinical interpretation of the St George's respiratory questionnaire for COPD (SGRQ-C) after adaptation to Malaysian language and culture, in patients with COPD.

BACKGROUND: Cultural differences affect the administration and results of health status questionnaires. "Cross cultural adaptation" ensures retention of psychometric properties such as validity and reliability at an item and/or scale level. OBJECTIVE: To develop a Malaysian version of St George's respiratory COPD specific questionnaire (SGRQ-CM), to evaluate the full spectrum of psychometric properties (reliability, validity and responsiveness), to test the factor structure and to assess minimum clinically important difference for the SGRQ-CM, to be used in population of Malaysia. METHODOLOGY: SGRQ-C was translated to Bahasa Malaysia using a standard protocol. 240 COPD patients were included in the study. All patients were followed-up for six months. Construct validity, internal consistency, item convergent validity, test-retest ability, responsiveness, factor analysis and MCID of the Malaysian version of SGRQ-C to be used in population of Malaysia were evaluated. RESULTS: The Cronbach alpha coefficient and intraclass correlation coefficients (ICC) for SGRQ-CM were reported as 0.87, and 0.88 respectively. Correlation of SGRQ-CM with CAT, EQ-5D-5 L, mMRC dyspnea scales and FEV1%predicted were reported as 0.86, - 0.82, 0.72 and - 0.42 respectively. Correlation coefficient between the subscales and other clinical and health status measures ranged from r = - 0.35 to r = - 0.87. The MCID was reported as 5.07 (- 2.54-12.67). CONCLUSION: The Malaysian version of SGRQ-C has a good psychometric property comparable to those of the original version and has a strong evidence of validity, reliability and responsiveness towards disease severity in Malaysian COPD patients. It can be recommended as a reliable quality of life measure for future research.

Dyspnoea Assessment In Adults With End-Stage Kidney Disease: A Systematic Review.

BACKGROUND: Dyspnoea is a common, disabling symptom of people living with end-stage kidney disease (ESKD), which may persist despite optimal management. Dyspnoea assessments can be grouped according to the instruments that assess domains related to: sensory-perception (intensity, sensory quality), affective distress (unpleasantness) and impact/burden (function, quality of life). OBJECTIVES: To describe dyspnoea assessment in adults with ESKD receiving renal replacement therapy (RRT). DESIGN: Systematic review. METHODS: Five databases were searched. Primary studies reporting an assessment of dyspnoea in adults with ESKD receiving RRT were included. Studies were excluded where participants with ESKD had received palliative/conservative treatment (no dialysis) or renal transplant. Conference abstracts, protocols, commentaries and/or images were excluded. Two independent reviewers screened and extracted the data. Descriptive analysis summarised the (1) number and type of instruments used to assess dyspnoea; (2) which dyspnoea domains to be assessed and (3) rationale and context for dyspnoea assessment. RESULTS: From 2,234 records screened, 28 studies were eligible for inclusion (observational n = 22 and experimental n = 6). Across studies, 12 different instruments were identified (dyspnoea-specific n = 3, subscale of a comprehensive instrument n = 9). Most instruments (n = 11, 92%) assessed a single domain (intensity n = 6, unpleasantness n = 6 and impact/burden n = 5). Studies reported a rationale for measuring dyspnoea (n = 26) as either a characteristic of the participant cohort (n = 14) or as an outcome (n = 14). CONCLUSIONS: Surprisingly, a few primary studies reported assessment of dyspnoea in people with ESKD receiving RRT. When assessed, there was a predominance of unidimensional instruments. As dyspnoea is associated with adverse clinical outcomes, routine dyspnoea assessment may improve management and relieve suffering.

Comparing the physical, psychological, social, and spiritual needs of patients with non-cancer and cancer diagnoses in a tertiary palliative care setting.

OBJECTIVE: The purpose was to describe the physical, psychological, social, and spiritual needs of patients with non-cancer serious illness diagnoses compared to those of patients with cancer. METHOD: We conducted a retrospective chart review of all patients with a non-cancer diagnosis admitted to a tertiary palliative care unit between January 2008 and December 2017 and compared their needs to those of a matched cohort of patients with cancer diagnoses. The prevalence of needs within the following four main concerns was recorded and the data analyzed using descriptive statistics and content analysis: •Physical: pain, dyspnea, fatigue, anorexia, edema, and delirium•Psychological: depression, anxiety, prognosis, and dignity•Social: caregiver burden, isolation, and financial•Spiritual: spiritual distress. RESULTS: The prevalence of the four main concerns was similar among patients with non-cancer and cancer diagnoses. Pain, nausea/vomiting, fatigue, and anorexia were more prevalent among patients with cancer. Dyspnea was more commonly the primary concern in patients with non-cancer diagnoses (39%), who also had a higher prevalence of anxiety and concerns about dignity. Spirituality was addressed more often in patients with cancer. SIGNIFICANCE OF RESULTS: The majority of patients admitted to tertiary palliative care settings have historically been those with cancer. The tertiary palliative care needs of patients with non-cancer diagnoses have not been well described, despite the increasing prevalence of this population. Our description of the palliative care needs of patients with non-cancer diagnoses will help guide future palliative care for the increasing population of patients with non-cancer serious illness diagnoses.

Differential Clinical Profiles, Exercise Responses, and Outcomes Associated With Existing HFpEF Definitions.

BACKGROUND: Heart failure with preserved ejection fraction (HFpEF) is common, yet there is currently no consensus on how to define HFpEF according to various society and clinical trial criteria. How clinical and hemodynamic profiles of patients vary across definitions is unclear. We sought to determine clinical characteristics, as well as physiologic and prognostic implications of applying various criteria to define HFpEF. METHODS: We examined consecutive patients with chronic exertional dyspnea (New York Heart Association class II to IV) and ejection fraction ≥50% referred for comprehensive cardiopulmonary exercise testing with invasive hemodynamic monitoring. We applied societal and clinical trial HFpEF definitions and compared clinical profiles, exercise responses, and cardiovascular outcomes. RESULTS: Of 461 patients (age 58±15 years, 62% women), 416 met American College of Cardiology/American Heart Association (ACC/AHA), 205 met European Society of Cardiology (ESC), and 55 met Heart Failure Society of America (HFSA) criteria for HFpEF. Clinical profiles and exercise capacity varied across definitions, with peak oxygen uptake of 16.2±5.2 (ACC/AHA), 14.1±4.2 (ESC), and 12.7±3.1 mL·kg-1·min-1 (HFSA). A total of 243 patients had hemodynamic evidence of HFpEF (abnormal rest or exercise filling pressures), of whom 222 met ACC/AHA, 161 met ESC, and 41 met HFSA criteria. Over a mean follow-up of 3.8 years, the incidence of cardiovascular outcomes ranged from 75 (ACC/AHA) to 298 events per 1000 person-years (HFSA). Application of clinical trial definitions of HFpEF similarly resulted in distinct patient classification and prognostication. CONCLUSIONS: Use of different HFpEF classifications variably enriches for future cardiovascular events, but at the expense of not including up to 85% of individuals with physiologic evidence of HFpEF. Comprehensive phenotyping of patients with suspected heart failure highlights the limitations and heterogeneity of current HFpEF definitions and may help to refine HFpEF subgrouping to test therapeutic interventions.

Definition of Episodic Dyspnea in Cancer Patients: A Delphi-Based Consensus among Spanish Experts: The INSPIRA Study.

BACKGROUND: Episodic dyspnea is an increasingly recognized phenomenon that occurs frequently in patients with cancer. Although numerous definitions have been proposed to describe episodic dyspnea, to date, no common widely accepted definition in Spanish has yet emerged. Without a clear well-accepted definition, it is difficult to design rigorous clinical trials to evaluate candidate treatments for this emerging entity and to compare outcomes among studies. OBJECTIVE: The aim of the study was to reach a consensus definition of episodic dyspnea in the Spanish language based on professional criteria in cancer patients. DESIGN: A two-round Delphi study. SETTING/SUBJECTS: Sixty-one Spanish specialists in medical oncology, radiation oncology, pneumology, palliative care, and pain management participated in the study. MEASUREMENTS: Sixteen different questions on dyspnea-related terminology, including the definition of episodic dyspnea, were assessed. RESULTS: The panel of experts reached a consensus on 75% of the 16 assessments proposed: 56.25% in agreement and 18.75% in disagreement. The term that most panelists considered most appropriate to define dyspnea exacerbation was dyspnea crisis. The panelists disagreed that dyspnea exacerbation is equivalent to dyspnea at effort and that the presence of dyspnea at rest is required for exacerbation to occur. However, there was wide agreement that exacerbation may or may not be predictable and can be triggered by comorbidities as well as emotional, environmental, or effort factors. CONCLUSIONS: The broad consensus reached in this study is a necessary first step to design high-quality methodological studies to better understand episodic dyspnea and improve treatment.

The Effect of Music on Dyspnea Severity, Anxiety, and Hemodynamic Parameters in Patients With Dyspnea.

This randomized controlled study (pretest, posttest, test control group) was conducted with the aim of determining the effect of music on the severity of dyspnea, anxiety, and hemodynamic parameters in patients with dyspnea. The research was conducted in the Chest Diseases Service of a public hospital in the western region of Turkey. The number of patients included in the sample was determined by power analysis, and as a result, 60 patients were accepted, 30 in the music group and 30 in the control group. Sixty percent of the patients who took part in the study were male, their mean age was 61.21 ± 1.13 years, and their mean dyspnea severity before the intervention was 62.68 ± 22.28. The difference between the mean dyspnea severity and anxiety scores of the music group patients before and after the application of music was found to be statistically significant (P < .05), but no statistically significant difference was found in hemodynamic parameters (P > .05). In light of the research findings, it was concluded that music had an effect on anxiety and the severity of dyspnea in patients with dyspnea but that it had no effect on hemodynamic parameters.

Distribution, temporal stability and association with all-cause mortality of the 2017 GOLD groups in the ECLIPSE cohort.

BACKGROUND: In 2017, the Global Initiative for Chronic Obstructive Lung Disease (GOLD) proposed a new classification of patients with chronic obstructive pulmonary disease (COPD). MATERIAL AND METHODS: We contrasted the distribution of COPD patients according to GOLD 2017 and 2011 classifications, the temporal stability of the 2017 groups during 3 years follow-up and their association with all-cause mortality in the ECLIPSE cohort. RESULTS: We found that GOLD 2017: (1) switched a substantial proportion of GOLD 2011C and D patients to A and B groups at recruitment; (2) about half of A, B and D patients remained in the same group at the end of follow-up, whereas 74% of C patients (the smallest group of all) changed, either because exacerbation rate decreased or dyspnea increased; and, (3) all-cause mortality by group was not significantly different between GOLD 2011 and 2017. Of note, mortality in B (16%) and D patients (18%) was similar, both with similar severity of airflow limitation, the best individual mortality risk factor. CONCLUSIONS: These results illustrate the cross-sectional and longitudinal effects of excluding FEV1 from GOLD 2017, and highlight both the clinical relevance of symptom assessment in the management of COPD and the prognostic capacity of FEV1.

Validation of the dyspnoea-12 scale into Portuguese speaking COPD patients.

BACKGROUND AND AIMS: Dyspnoea-12 assesses dyspnea based on the physical and affective components of the symptom. The aim of this study was to translate the Dyspnoea-12 into Portuguese, and to obtain validation data regarding the use of this tool in patients with chronic obstructive lung disease (COPD). METHODS: The English version of the scale Dyspnoea-12 underwent a formal translation process into Portuguese as spoken in Brazil with the final version being called Dyspnoea-12-Pt. The latter was applied to 51 Portuguese-speaking patients with COPD (33 men; age: 66.4 ± 8.1 years; FEV1 : 48.7% ± 17.2% pred). Participants also completed the Medical Research Council dyspnea scale (MRC), the Baseline Dyspnea Index (BDI), the Hospital Anxiety and Depression scale, the Saint George's Respiratory Questionnaire (SGRQ) and performed spirometry and the Six-Minute Walk Test (6 MWT). Forty-five volunteers in stable clinical conditions also completed the Dyspnoea-12-Pt scale approximately 2 weeks after the first evaluation. RESULTS: Dyspnoea-12-Pt showed significant correlations with the scales MRC (r = 0.494), BDI (r = -0.511), SGRQ (r = 0.806), Anxiety (r = 0.471), Depression (0.414) and walked distance in the 6 MWT (r = 0.329). Cronbach's alpha of Dyspnoea-12-Pt total was 0.921 and the intraclass correlation coefficient between sequential measures was 0.829. CONCLUSION: The scale Dyspnoea-12-Pt exhibits acceptable psychometric properties and may be used as an evaluation tool of dyspnea in Portuguese speaking COPD patients.

Clinical characteristics of chronic bronchitic, emphysematous and ACOS phenotypes in COPD patients with frequent exacerbations.

PURPOSE: Chronic bronchitis (CB), emphysematous (EM) and asthma-chronic obstructive pulmonary disease (COPD) overlap syndrome (ACOS) phenotypes in COPD are well recognized. This study aimed to investigate distinguishing characteristics of these phenotypes in COPD patients with frequent exacerbations (FE). PATIENTS AND METHODS: A retrospective study was carried out. COPD patients with acute exacerbations were consecutively reviewed from November 2015 to October 2016. Patients were divided into FE and infrequent exacerbations (iFE) subgroups. RESULTS: A total of 142 eligible COPD subjects were reviewed. In the CB phenotype subgroup, age, body mass index, forced expiratory volume in 1 second (FEV1) % predicted, COPD assessment test (CAT), modified Medical Research Council breathlessness measurement (mMRC) dyspnea scale, emphysema scores and arterial carbon dioxide pressure (PaCO2) were significantly different in subjects with FE when compared to those in subjects with iFE of CB. In the EM phenotype subgroup, age, CAT, mMRC scores and history of COPD were different in subjects with FE when compared to those in CB subjects with iFE. Multivariate analysis indicated that FEV1% predicted (odds ratio [OR] =0.90, P=0.04) and PaCO2 (OR =1.22, P=0.02) were independent risk factors for FE in COPD with CB phenotype, and CAT (OR =2.601, P=0.001) was the independent risk factor for FE in COPD with EM phenotype. No significant differences in characteristics were observed in ACOS phenotype subgroups with FE or iFE. CONCLUSION: In CB or EM phenotypes, COPD patients with FE present several differential clinical characteristics compared to patients with iFE, while the characteristics of ACOS phenotype in patients with FE need more investigation.

Degree of dyspnoea at admission and discharge in patients with heart failure and respiratory diseases.

BACKGROUND: Dyspnoea is a disabling symptom in patients admitted with heart failure (HF) and respiratory diseases (RD). The main aim of this study is to evaluate its intensity at admission and discharge and the relation with quality of life. We also describe its management, intensity, and evolution in HF and RD. METHODS: In this descriptive, cross-sectional study, we included prospectively all patients admitted with decompensated HF and chronic obstructive pulmonary disease (COPD)/pulmonary fibrosis during 4 months. Surveys quantifying dyspnoea (Numerical Rating Scale 1-10) and quality of life (EuroQoL 5d) were administered at discharge. RESULTS: A total of 258 patients were included: 190 (73.6%) with HF and 68 (26.4%) with RD (62 COPD and 6 pulmonary fibrosis). Mean age was 74.0±1.2 years, and 157 (60.6%) were men. Dyspnoea before admission was 7.5±0.1. Patients with RD showed greater dyspnoea than those with HF both before admission (8.1±0.2 vs. 7.3±0.2, p=0.01) and at discharge (3.2±0.3 vs. 2.0±0.2, p=0.0001). They also presented a higher rate of severe dyspnoea (≥5) at discharge (23 [34.3%] vs. 36 [19.1%], p=0.02). Opioids were used in 41 (15.9%), mean dose 8.7±0.8 mg Morphine Equivalent Daily Dose. HF patients had worse EuroQoL 5d scores than those with RD, due to mobility problems (118 [62.1%] vs. 28 [41.8%], p=0.004), and lower punctuation in Visual Analogue Scale (57.9±1.6 vs. 65.6±1.0, p=0.006). CONCLUSIONS: About a quarter of patients admitted with HF or RD persist with severe dyspnoea at discharge. Opioids are probably underused. HF patients have less dyspnoea than patients with RD but present worse quality of life.

Association of types of dyspnea including 'bendopnea' with cardiopulmonary disease in primary care. / Associação dos tipos de dispneia e da "flexopneia" com as patologias cardiopulmonares nos cuidados de saúde primários.

INTRODUCTION: Dyspnea is the symptom most commonly reported by patients with heart failure (HF) and/or pulmonary disease, the obese and the elderly. Recently 'bendopnea' (shortness of breath when bending forward) has been described in patients with HF. OBJECTIVE: To determine the association of exertional dyspnea, orthopnea, paroxysmal nocturnal dyspnea and bendopnea with chronic disease, especially heart failure, and their phenotypes in primary care. METHODS: This cross-sectional study included 633 individuals aged between 45 and 99 years enrolled in a primary care program in Niteroi, Brazil. Participants underwent clinical assessment and laboratory tests and completed a questionnaire, all on the same day. RESULTS: Paroxysmal nocturnal dyspnea and bendopnea were associated with HF (unadjusted OR 2.42, 95% CI 1.10-5.29 and OR 2.59, 95% CI 1.52-4.44, respectively). In multivariate models, chronic obstructive pulmonary disease, coronary heart disease and myocardial infarction were not associated with bendopnea. CONCLUSIONS: Bendopnea was the only type of dyspnea not linked to respiratory disease or coronary heart disease. Even after adjusting for depression and body mass index, the association remained with HF with or without preserved ejection fraction, and bendopnea thus appears to be a promising symptom to differentiate HF from the other two disease groups.

Agreement between a simple dyspnea-guided treatment algorithm for stable COPD and the GOLD guidelines: a pilot study.

INTRODUCTION: Guidelines recommendations for the treatment of COPD are poorly followed. This could be related to the complexity of classification and treatment algorithms. The purpose of this study was to validate a simpler dyspnea-based treatment algorithm for inhaled pharmacotherapy in stable COPD, comparing its concordance with the current Global Initiative for Obstructive Lung Disease (GOLD) guideline. METHODS: We enrolled patients who had been diagnosed with COPD in three primary care facilities and two tertiary hospitals in Spain. We determined anthropometric data, forced expiratory volume in the 1st second (percent), exacerbations, and dyspnea based on the modified Medical Research Council scale. We evaluated the new algorithm based on dyspnea and exacerbations and calculated the concordance with the current GOLD recommendations. RESULTS: We enrolled 100 patients in primary care and 150 attending specialized care in a respiratory clinic. There were differences in the sample distribution between cohorts with 41% vs 26% in grade A, 16% vs 12% in grade B, 16% vs 22% in grade C, and 27% vs 40% in grade D for primary and respiratory care, respectively (P=0.005). The coincidence of the algorithm with the GOLD recommendations in primary care was 93% and 91.8% in the respiratory care cohort. CONCLUSION: A simple dyspnea-based treatment algorithm for inhaled pharmacotherapy of COPD could be useful in the management of COPD patients and concurs very well with the recommended schema suggested by the GOLD initiative.

Long-term Prognosis in COPD Exacerbation: Role of Biomarkers, Clinical Variables and Exacerbation Type.

Long-term outcome prediction in COPD is challenging. We conducted a prospective 5-7-year follow-up study in patients with COPD to determine the association of exacerbation type, discharge levels of inflammatory biomarkers including procalctionin (PCT), C-reactive protein (CRP), white blood cell count (WBC) and plasma proadrenomedullin (ProADM), alone or combined with demographic/clinical characteristics, with long-term all-cause mortality in the COPD setting. The analyzed cohort comprised 469 patients with index hospitalization for pneumonic (n = 252) or non-pneumonic (n = 217) COPD exacerbation. Five-to-seven-year vital status was ascertained via structured phone interviews with patients or their household members/primary care physicians. We investigated predictive accuracy using univariate and multivariate Cox regression models and area under the receiver operating characteristic curve (AUC). After a median [25th-75th percentile] 6.1 [5.6-6.5] years, mortality was 55% (95%CI 50%-59%). Discharge ProADM concentration was strongly associated with 5-7-year non-survival: adjusted hazard ratio (HR)/10-fold increase (95%CI) 10.4 (6.2-17.7). Weaker associations were found for PCT and no significant associations were found for CRP or WBC. Combining ProADM with demographic/clinical variables including age, smoking status, BMI, New York Heart Association dyspnea class, exacerbation type, and comorbidities significantly improved long-term predictive accuracy over that of the demographic/clinical model alone: AUC (95%CI) 0.745 (0.701-0.789) versus 0.727 (0.681-0.772), (p) = .043. In patients hospitalized for COPD exacerbation, discharge ProADM levels appeared to accurately predict 5-7-year all-cause mortality and to improve long-term prognostic accuracy of multidimensional demographic/clinical mortality risk assessment.

[Episodic breathlessness: translation and consenting of the international definition using the Delphi method]. / Atemnotattacken: Übersetzung und Konsentierung der internationalen Definition im Rahmen einer Delphi-Befragung.

BACKGROUND: Similar to pain, refractory breathlessness can occur episodically. Episodic Breathlessness is a distressing symptom in patients with advanced life-limiting disease. The lack of a universal definition impedes symptom understanding in clinical practice and effective management, respectively. The aim of the study was to formally consent a German translation of the English definition and terminology of episodic breathlessness. METHODS: A web-based Delphi survey was conducted with German breathlessness experts (breathlessness working group of Germany's National Guideline (S3) for Palliative Care). Drafts of German-language definitions und terminology were assessed using structured questionnaires by binary rating or rankings, respectively. Optional comments were analysed by content analysis. Consensus was defined by ≥ 70% agreement among participants. RESULTS: In two resulting Delphi-rounds 8/16 (50%) und 11/16 (69%) experts, 30-59 years of age, 50%/55% female, participated. After the second round, consensus was reached for the symptom's description "Atemnotattacke" (73%) and a German-language definition (90%). The terms "vorhersehbar" vs. "unvorhersehbar" were directly consented for the categorization (88%). CONCLUSION: The formally consented German definition and terminology of episodic breathlessness enable clearer symptom understanding and provide a precise basis for education and research on the symptom and its management also in Germany. Effective management options are warranted to improve quality of life of suffering patients and their relatives.

Pulmonary rehabilitation: timing, location, and duration.

Pulmonary rehabilitation programs vary in terms of duration and location. Differences also exists in the patients who are judged eligible for rehabilitation. This article reviews the options clinicians have to organize programs in terms of who should be referred, when, where, and for how long. There are several risk factors for lack of uptake and non-adherence to programs. Logistical aspects are also an important barrier. In terms of election, patients with muscle dysfunction are likely the best candidates for exercise training. Patients with exercise-induced symptoms and those after exacerbations should also be referred.